6020 in our own words - Breast Cancer Action Nova Scotia

Breast Cancer Online:
In Our Own Words
Post Office Box 34091
Scotia Square RPO
Halifax, NS B3J 3S1
Tel: (902) 465-2685
Fax: (902) 484-6436
http://bca.ns.ca
email: [email protected]
Charitable Registration No. 89080 6193 RR0001
(c) Copyright 2001 Breast Cancer Action Nova Scotia
All rights reserved. No part of this work covered by the copyrights hereon may be reproduced or used in any form or by any
means - graphic, electronic, or mechanical - without the prior
written consent of the publisher.
Reprint December 2001
ISBN 0-9730144-0-7
Printed in Canada
by Print Atlantic
140 Joseph Zatzman Drive
Dartmouth, Nova Scotia B3B 1M4
Breast Cancer Online:
In Our Own Words
Postings from around the world to Breast Cancer Action Nova Scotia
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Breast Cancer Online:
In Our Own Words
Postings from around the world to Breast Cancer Action Nova Scotia
http://www.bcans.org
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Anyone who has or might have a health problem should consult a
professional health care provider. BCANS encourages each person to become informed about the full range of preventive, diagnostic and treatment options when making decisions about her
health care.
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Afterashatteringdiagnosis,BCANSbringscalm
By Orina Mann
Where does a woman turn when the solid support of familiarity has
dramatically and irrevocably been snatched out from under her with a
diagnosis of breast cancer? Immediately after delivering the devastating news, my surgeon stated, “I’m sorry, dear. Why don’t you get off
the phone for a bit, collect your thoughts, then call back for a list of
what we need to do next.”
Collect my thoughts? At this point, they were scattered far
beyond reach! I almost laughed aloud, but anguished sobs forced
their way from my throat instead. “I have cancer,” was all I could
think. “What am I going to do now?”
The monumental task of shifting self-perception to include
breast cancer as part of her personal reality is among the most difficult
endeavors a woman encounters after diagnosis. She struggles to comprehend its meaning in her life. Strange and ominous words like CT
scan, bone marrow biopsy, mastectomy, reconstruction, chemotherapy,
radiation, and prognosis are suddenly thrust in her direction as if she
is supposed to embrace them with ease and move forward gracefully.
Emotional, physical, spiritual, and mental capacity are stretched to
the limits of tolerance, then repeatedly asked to give some more.
Nothing feels ordinary, safe, or clear.
Friends Try to Help
“I know this must be awful for you,” well-meaning friends
interject. But the woman who receives a diagnosis of breast cancer
soon understands that no one fully comprehends how it is…unless
she has been there herself.
No two cases are exactly alike. No two women will
experience their cancers in the same way. Yet certain themes
permeate throughout the community of breast cancer survivors.
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Diagnosis elicits a myriad of emotions from anger, shock,
betrayal, anxiety, and depression, through courage,
determination, acceptance, and hope. Behaviors range from
numb denial to frantic action. Raw fear mingles with intuitive
knowing, resulting in vacillation from a sense of terror to safety
and back again. Treatment options are varied, side effects
profound, and outcomes uncertain. Information provided is
amazingly contradictory. What is normal in a world where
nothing feels familiar and so little is consistent? Where does
one turn for support and understanding when faced with the
life-threatening, life-altering diagnosis of breast cancer?
Many of us found an answer to that question in an
unexpected locale, an on-line breast cancer forum, BCANS. This
Internet support group is managed by, from, and for people who
have been touched personally in some way by breast cancer. The
majority of contributors are women with a breast cancer history,
but spouses, family members, men with breast cancer, and women
at risk also seek support and provide valuable insight. Some of us
stumbled upon the site while searching for information about our
disease; others discovered it as a suggested breast cancer link; a
few heard by word of mouth.
‘Normal’ acquires new meaning
For most participants there is overwhelming comfort and
relief in finding a place where information, feelings, questions,
and individual realities are welcome, heard, and validated. ‘Normal’ acquires new meaning on the forum, expanding to include
each person’s experience, no matter how unique. Widespread
themes emerge at this Internet site, replacing feelings of doubt,
uncertainty and outright craziness with confidence, conviction and
a relative sense of stability.
On the BCANS Forum, no question is deemed stupid, no
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feeling irrational, no experience impossible. A woman who is told a
particular symptom is not related to treatment might come to the forum
and find several others who had the same symptom! Others talk openly
about fear of recurrence and death, depression, pain, or fatigue. These
are issues family and friends may no longer want to visit, yet they
burn with intensity in the hearts of many breast cancer survivors. When
is a particular test indicated; what is it like; how useful are the results?
Has anyone found a natural way to manage depression, insomnia,
lymphedema, or pain? What do you tell the kids about your cancer?
How do you cope with rude comments, thoughtless husbands, threats
to your career, or scared children? In what ways has breast cancer
affected your spiritual awareness? Inquiries such as these elicit understanding, caring, and knowledgeable responses. A unique form of
humor, probably appreciated only by those who have been there, cheers
up the most despondent participants, inspiring countless comments
of ‘LOL’ as we laugh out loud right to our monitor’s face!
One family of women
Over time, individual personalities emanate from the BCANS
Forum, without influence of physical form. Although we branch out
all over the planet, we are as a single family sharing unified roots.
Diverse in every other way, we come together here in support of one
another, each participating from the foundation of our commonality,
an experience with breast cancer. In no way intended to diagnose or
treat disease, replace medical care and recommendation, or prevent
people from seeking professional help of any kind, this forum is a
source of simple sustenance for those whose lives have been touched
by breast cancer. Where does a woman turn when her world is torn
asunder with the dreaded diagnosis? For many, one option is the
BCANS Forum, with the worldwide wisdom of breast cancer support
on-line. This publication, composed of representative postings from
the forum demonstrates the quality, style, and value of this site. Enjoy!
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About the BCANS Web Site
Online since 1996, the BCANS web site (http://www.bcans.org) is an
international community resource available 24 hours a day. We invite
you to visit our site and read the thousands of messages that have
been shared by people whose lives have been affected by breast cancer.
The objectives of BCANS are:
to heighten awareness of breast cancer as a major health care issue
to promote support services for people affected by breast cancer
to promote education about breast health and breast disease
to promote a more informed partnership between patients and the health
care team to develop a network/community of women with breast
cancer
BCANS would like to express heartfelt thanks and admiration to all
who have played a role in the development of Breast Cancer Online: In
Our Own Words. This project has truly been a labour of love, and many
hands went into the development and coordination of this project.
We would like to thank and acknowledge all members of the Booklet
Committee - Lynne Wagner, Jean Reeve, Paula Layton, Orina Mann,
Nancy Radcliffe and Glenna Stitcher, who saw the booklet through from
conception to publication and distribution. Special thanks to the many
site visitors and others who suggested and searched for posts to be
included.
(* Asterisk indicates name was changed to protect privacy)
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Medical Treatment: Mammography,
Surgery, Chemotherapy, Radiation,
Tamoxifen
Hello! I have just been diagnosed with breast CA less than a week
ago. Found a lump on my mammo and had an excisional biopsy. I
know that I have much to be thankful for - it is very small, 4.5mm,
margins were clear on biopsy but I have found myself overcome
with fear and terror at the thought of another surgery, poss chemo
and radiation. I am scheduled for lumpectomy and node resection
Nov. 10. Can anyone give me ideas on how I will feel after surgery,
when can I be up and around, return to activities, etc?
Pat S.
Hi Pat, You wouldn’t be human if you weren’t overcome by
fear at this point. But trust everyone here, we’ve all been where
you are now and are still here to talk about it. I had a
mastectomy and there was very little pain, I’ve had headaches
that were worse! The important thing is to do the exercises the
docs recommend after surgery in order to get arm mobility
back to normal. I was playing golf 3 weeks after my surgery so
it wasn’t a very long recuperation period. When you get the
info on the nodes back you will have to decide on treatment.
Depending on many factors: if the cancer has spread to the
nodes, whether or not it is estrogen receptive, how aggressive
the cells are, how old you are etc. treatments like chemo,
radiation and Tamoxifen will be recommended. We have all
been there and though it is not a lot of fun, you will make it
through. They have great medications for side effects these
days and you can come always come here for advice and
support. I learn meditation and visualization to combat the
fear which can be really overwhelming at first. Others could
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no doubt suggest other ways of coping. Just remember you
will make it through this!
Kathleen
Dear Pat, Take heart...you’ll make it through the treatments
and surgery as the rest of us have! It’s not always fun and
pleasant, but you have your LIFE and you’ll see how precious
it becomes to you.
You’ve come to the right place for good advice and
encouragement! We’re a tough bunch of SURVIVORS, so let
us know how you’re doing and what we can do to help you
cope! I think the one thing that has been most beneficial to me
by reading these posts is that it is okay to be fearful, grieve,
cry and scream. That is a very normal part of our recovery.
The fears will become less intense as you go and you’ll find
new strength and courage! Having breast cancer is very
traumatic, but you can make it! I’ll be praying for you!!!!
Sue in Denver
ANXIOUS ABOUT TOMORROW
Tomorrow is mammogram day! This will be my five year checkup and you would think it would get easier. For some reason I am
more worried about this one than I have been the past four years.
Actually it’s not tomorrow that is frightening- it’s the next few
days when you’re hoping the phone doesn’t ring with news that
they have found something “suspicious.” The waiting is the hardest part.
Darlene
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Darlene, I will include you in morning prayer when I arise
tomorrow. On a more mundane note, I agree that the waiting is
crazy making, so I don’t. I am also a 5+ years survivor, but after
one radiologist missed a positive tumor that I could feel myself, I
started looking at my own mammograms (yes, you can. You bought
and paid for them.) I established a friendship with the mammography tech as well as the tech who does my bone scans. I see my
mammograms as soon as they are developed as well as the computer
read-out on the bone scans as they are done. On the day I am
scheduled for a mammogram, I make an appointment with the
radiologist who will be doing the report and have him go over the
scans with me at once. I have been doing this for several years
with several radiologists and have never been refused. I also get a
copy of the written report on the same day as my primary care
physician. In California, all your medical data is yours and you
have the right to access any and all of (including physicians’ notes)
whenever you want. Take a deep breath. Try not to worry. Be well.
Paula Sue
Yes, waiting is hard. We have a good set up for mammograms at a
local hospital breast center. A team of radiologists read them right
after being taken. That’s what happened to me two weeks ago that
led up to today’s surgery in a few hours. Knowing right away
prevents some extra anxiety. You are in my thoughts and prayers.
Take care.
Marcia
TAMOXIFEN SIDE EFFECTS
Hi, I just got off the phone with my mom. The pathologist at her
hospital told her there were no side effects from Tamo. I told her to
march in there on Monday morning and tell that person that there
are most definitely side effects!! I told her that people need to know
the truth so they can make more well informed decisions. I would
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say uterine cancer is definitely a side effect! Still on tamo and
trying to decide.....
Tami
Man, does that get my blood boiling! According to some of
these specialists, it seems NOTHING has side-effects! Not
Tamoxifen, not chemo, not radiation, not EVEN getting hit by
a Mack Truck! There ARE some really decent and really GOOD
doctors out there. But the others? They should either spend
less time on the golf course or get out of their profession
altogether! I’m really,reeeeally glad you’re there for your Mom,
Tami.
Linda
She has been in medical records since I can remember. So, she
took my path report for questions to that person. I just want
people to know that there are side effects. There is no breast
cancer in either side of my family except a second cousin who
died. They say she doesn’t count. Wonder what she would say?
Tami
PERPETUAL DRY/SORE THROAT
I should be very interested to know if any other ladies who have
had radiation have this problem. I had four beam radiation including
the collarbone area. There was lead shielding to protect my oesophagus. I finished radiation in mid May 1998. Every morning I
wake with a dry, almost sore throat. Sometimes it goes away once
I am up and about and other times it gets worse and feels really
sore, as if I am sickening for a cold or something. I guess it is there
more than it is not and I am getting sick of it. Like all these things,
when you have had a bc diagnosis, I can’t say it is a BIG problem
– the pain is only minor, but it is irritating and worrying. Does
anyone else experience this?
Paula from Sydney
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I’ve not received radiation, so can’t speak from personal
experience. But, I remember 3 years ago making a phone call
to this excellent cancer information line we have here on
someone elses behalf, who was complaining of the same
problem you’re describing. What was told to me was that radiation to the head and neck area can affect the salivary glands
so that they don’t function as efficiently, causing dry mouth
and an irritated throat because everything is too dry or dryer
than normal. Perhaps the collarbone area is just close enough
to potentially cause the same side-effect. Obviously, I don’t
know that this DOES apply to you, but when I saw your post
and remembered the call I’d made, I wanted to offer it up to
you as at least one possible explanation.
Linda
I have the exact same thing, the cough is so much now that I
actually end up losing my voice from the cough and eventual
dryness. It has been one thing that has made my return to work
difficult. On Thursday, I was on the phone on an important
conference call when “it started” – everyone looked at me like
“what the heck is wrong”. I had informed my boss prior to my
return, but this week it has really taken over. I have been to
ear, nose and throat specialist. They identified a 2cm mass on
my thyroid which has made the effect worsen as related to voice
loss. I had a biopsy and everything came back fine..so, do I
just get used to this? None of my doctors seem to know the
real reason, although I think it is radiation related because I
also had radiation to the collarbone area. My group did not
provide any protection which I was not aware even existed
until this mass showed up. Do you tend to lose your voice at
night or when you are tired?
Maureen in Connecticut
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STILL TRYING TO DECIDE (Tamoxifen)
Talked to my oncologist today and asked him some questions I had
been wondering about. Yesterday I celebrated my 4th birthday. I
had a Stage 1 cancer, 1.4 cm. Medullary tumour, node negative,
mastectomy, CMF, and started on Tamoxifen in 1995. Found out
the following today (I was told this before, but it didn’t compute)
…if I wouldn’t have had any treatment I would have had a 14%
chance of recurrence… if I would have had just Tamoxifen I would
have had a 12% chance of recurrence… if I would have had just
Chemo. I would have had a 9% chance of recurrence (I’ve had
both…where does that leave me?) I know that we all laugh about
stats., but this is what I have to go on. The doc. said my prognosis
was excellent at this point and my tumour was only slightly er+.
So now I mull over the question…should I continue on Tamo. for
another 1.5 years or figure that I have had enough (my doc. thinks
I’ve had enough). I know that everyone has a different opinion,
but just wanted to see what is out there. What would YOU do?
Thanks for thinking this through with me.
Sue in Denver
Statistically speaking, I’d say you’re in the 98th percentile in
likelihood of being cured forever. All your signs are positive.
You’re one of the women that gives early detection a great
name. I’d quit everything (drugs, interference etc.) and get
back to life, but that’s just my bias speaking.
jean214
Hmmmm…that’s a GOOD question (or a mind-boggling one,
I’m not sure!). Certainly you know my relationship with
Tamoxifen. Very up and down, stop and start. But a course
once chartered upon” and all that stuff… I guess I would look
at it this way. Ask yourself why you took Tamoxifen in the first
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place (I’m sure the percentages were about the same back then).
Then ask yourself about the side effects and your tolerance to
them. If you tolerate Tamoxifen well I would stick with the
remaining year and a half. If you don’t, I probably wouldn’t. I
think at this point, remember that you are under the
recommended five years before toxicity might happen and lead
to other difficulties, it can only do you good to complete the
full five years. But if I were in your position and I had severe
hot flashes, dizziness, tamo-head, muscle and joint aches, any
leg cramping or vision problems, I’d cut short my Tamo-trip
and stop immediately. Love,
Lynne
SPEAKING OF LYMPHEDEMA
As most of you may know, I’m (visiting) in the beautiful state of
Utah, 8,000 feet up in the mountains. I have never had lymphedema
before, so I don’t know what to expect. I didn’t get one of those
sleeves prior to flying out here, cause it’s never bothered me before.
But, last night I started getting a tingle and numbing sensation and
it’s getting worse today. It doesn’t seem swollen, just the “asleep”
feeling, like when you’ve slept on your arm. What will make me
really mad, is the fact my doctor has always pooh-poohed the idea
of lymphedema, said I should never have a problem, not to worry.
I try and be somewhat careful about that arm, but I guess I should
have gotten a sleeve to wear. Anyone have this type thing happen?
My daughter in-law is here with us, and she’s a physical therapist.
I’ll have her massage it tonight.
Love to all………Nancy R.
Nancy, I’ve had mild symptoms like those you describe quite
often, and have never developed full-fledged lymphedema.
Having a massage is a great idea! If she hasn’t been trained in
lymphedema drainage, you might remind her that it’s the most
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effective if the area right above the clavicle is gently drained
first to allow room for the lymph fluid from the arm to empty
into. Then go to the hand and very gently massage toward the
shoulder, only pressing deeply enough to pull the skin upward
(you’ll see it “bounce back” as you let go). It’s almost second
nature to me to hold my right arm (the one most often affected)
up over my head, sometimes resting on my head. It looks kind
of funny, but it really helps keep the arm drained. Be careful
about lifting, especially carrying suitcases or anything that
pulls your arm down. You can bind your arm in a simple ace
wrap or two on the flight home to decrease risk of further
edema. I’m sure you’ll be fine, but these simple tips might
help. Have a wonderful time. Utah is one of my favorite places
to hike, camp, and raft rivers; it’s so incredibly gorgeous!
Love, Orina
Ocasionally, I have like a knot form on my right arm, and my
right index finger will swell. This is after I have used it too
much. I did go to a therapist, and she suggested along with
massaging, holding it above your head. I am a secretary, and
my right side was affected (which is also my mouser side) so I
raise my arm several times during the day, this helps a lot. At
night I too, just kind of rest my arm on my head, stretching in
and out, like when watching TV.
Marlene B.
SENTINEL NODE BIOPSY
My surgeon was on T.V. last night, and he and his partner also
made the local newspapers today. I had heard of his work before
in this area and thought you might be interested in this research.
This may be common knowledge to you ladies already, but I’ll
share in case some of you might be interested. In short, Dr. Thomas
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Bauer and Dr. Steven Pandelidis (of York, Pa.) have been studying
the significance of the sentinel node, the first lymph node that a
cancer would spread to before going to the rest of the other nodes
and then to the rest of the body. Fifty-three women agreed to be
part of the research. Dr. Bauer discovered that if the sentinel node
was neg., there was a 95.5% chance that the cancer had not spread
to the breast, saving the women from painful axillary dissection or
the removal of the lymph nodes. Benefits would include less time
in the operating room, costs less, and women won’t have the swollen
arms that can come with removal of the lymph nodes. On Friday,
Dr. Bauer performed the surgery on the first women outside the
research group. She had .7 cen. Lump, detected by a mammogram. Dr. B. detected the sentinel node by using radioactive dye
and a Geiger-type device to pinpoint the location. He removed the
node, which was tested while he removed the tumor. The node
was neg., which meant she didn’t need to have all 21 nodes removed.
After reading all the recent notices about the arm swelling after
node removal, I thought this sounded like an especially welcome
step forward in the treatment of breast cancer. Just wanted to share
the good news!
Rita
Hello, gentle souls. My surgical oncologist performs sentinel
node biopsies here in Macon. He is very excited about this
procedure. This is my first time talking to folks on the computer.
I look forward to learning lots from all of you. My best to all
of you.
Rorie, wife of Robert
I had a friend who was in this study and had her bc last Oct. I
had heard about the sentinel node procedure from a mutual
friend and didn’t realize how big a deal this was until I saw the
newspaper article and TV coverage. I’m extra thrilled for my
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friend that this study worked out for her, especially after
reading the messages here about all the problems with
lymphedema from all the lymph nodes being taken. Thanks
for responding.
Rita
ARM MOVEMENT
My mastectomy was in August, after my first mammogram in July,
my surgeon informed me that after having lymph removed as well,
that I would never be able to return to activities I enjoyed that
involved repetitive arm movement, such as canoeing, x-country
skiing, etc. Are there physical therapy exercises that have been
provided to return your arm/shoulder back to sporting activities?
Julie
Julie – I am always cautious of people who use the word
NEVER..I had surgery almost two years ago. I am happy to
say that I enjoy all of my previous hobbies. Many of which
required repetitive arm movement and strength. I spent some
time not being able to do what I was used to, but once I got
over the fear of “hurting” my arm, I noticed that activities
regained their place in my life. I have been spending a lot of
time painting and wallpapering rooms in my home. I
recommend a lot of slow stretching motions, for starters. You
will know when to slow down or increase the pace. All the best
in your return to the things you love.
Maureen in Conn.
Julie – You are right to question anyone who tells you “never”
about anything! The research investigating repetitive arm
motion and post-operative lymphedema is scant and questionable in method. Many women have gone on to resume most
activities they previously enjoyed and added new ones just
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because they wanted to know they could! The key is slow and
steady while listening to what your body tells you. I had
bilateral mastectomies, lymph node dissection and radiation.
I have to be consistent with daily stretches and I do have a fair
amount of pain with movement, but my range of motion is great,
my strength is good, and I’m chopping firewood, typing, and
carrying a light backpack again. I have done a tiny bit of
rowing and hope to be back in the canoe next spring. I do
have a compression sleeve which I wear once in a while. Things
are not “back to normal” (there’s no going backwards in life),
but I’m not defined by my illness or treatment either. Good luck!
Orina
DOES THE REMAINING BREAST REALLY
GROW?
A friend of mine just told me she learned that the breast that did
NOT have the tumor starts growing after the lumpectomy or
mastectomy. The person who told her that – who has been involved
in breast cancer support groups for a long time – said everyone
know” that’s what happens. I REALLY don’t want to believe this
because my breast that had the lumpectomy is already noticeably
smaller, at least a full cup size, than the unaffected one. I’m hoping
that if the unaffected breast really does grow in bc patients, it’s
related to overall weight gain, not any compensating mechanism.
Has anyone else heard this or experienced it?
Laurie
Hello, my friend. I guess I hadn’t heard of this either and after
four years the “natural side” is actually a bit smaller. The
surgeried side looks about the same, though it is a bit harder
due to radiation shrinking up the scar tissue and making it
tighter around the implant. I had never heard of the other side
growing at all. Though it is a real fact that one’s nose grows
your whole life – no fooling! Hugs and love to you!
Penney
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IMPLANTS
My friend has finally gotten a Dr. to agree to remove her remaining
radiated breast and insert implants. Anyone have any suggestions
or helpful hints for her? She had a lumpectomy, radiation and
chemo. five years ago. She took tamo. and got a brand new tumour
in her other breast five years later. She opted for a mastectomy.
For her peace of mind she wants the other one removed. Tell me
about radiated tissue and implants!
Tami
Tami, I just know that when I was doing my radiation research,
I learned that radiation can make later reconstruction
impossible, because of the tissue damage. One more lovely
little secret that isn’t shared by the radiation oncologist! Best
wishes to your friend. I hope everything goes well for her.
Perhaps she has enough good tissue left.
JJ
My reconstruction after radiation does not look that good
because of the damage to the tissue. They removed as much
damaged tissue as they could and therefore I have a much
smaller breast on the reconstructed side and the skin is very
thin from being stretched to accommodate my implant. Good
luck to your friend. Maybe her radiation damage was mild.
Glenna
DEPRESSION
I didn’t use my computer for a few days and was blown away by all
the news I missed. Reading this forum has helped by reminding
me how normal my feelings are. My body has been overwhelmed
by all my chemo and radiation in the last six years, but by far the
most dangerous effect has been the depression. I went on an anti-
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depressant – went off because I thought I didn’t need it – went
back on it. I am the family barometer, when I am down my kids
and my husband react poorly. I realise that isn’t fair and is a heavy
load, but they are really young. They are learning that they are
responsible for their own happiness, but they are still understandably
afraid when I go into “a black hole”. Two things have helped me
with the depression. One is giving into it for a set period of time –
having a bath, crying, reading a really bad novel, complaining to a
friend who won’t try to fix things or point out how everyone has it
rough. The other is moderate exercise. It was SO HARD to do,
because I didn’t feel well and there were 300 excuses, but walking
and yoga really helped with the depression. I have neuropathy
from the taxol and BMT and my spine will never be the same from
mets., but I can still walk. In a few weeks I’ll change chemos. and
lose my hair (again). It is harder to lose it this time than the other
times and I know I’ll go into a funk. Any ideas on how to stop the
depression before it starts?
Lizzie
Dear Lizzie, Don’t blame yourself for anything as you are just
an active participant fighting this horrible disease. I feel like
I am still going through a grief process after almost 2 years. I
often wonder it this ends, but I really don’t think so, due to
now we have to learn to live each day with cancer, and nothing
associated with it is easy. We have to keep being stronger and
never give up on hope. We are here to help each other through
the best or worst of all this. I would appreciate knowing the
name of a depression pill that seems to help. I have tried
Serzone, but it made me feel like a zombie and I know there
are so many out there to take. I never sleep through the night
lately. I guess I am really looking for that happy pill to take if
its out there. Love and prayers,
Pauline from Florida
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I took Serzone and it made me feel like a zombie too. I couldn’t
get off the couch and it make my eyes feel so dry and nothing
helped. My therapist finally convinced me to try Prozac,
although I have always been afraid of it. Well, it was like
turning on a different person. It has helped me SO much.
Everyone tells me that it has made quite a change in me.I was
a little nervous (shaky) from it the first week, but that wore off
and then in two weeks I started to feel a change and in a month
I was starting to feel like the person I remembered being before.
The black hole was gone and it felt good to be happy once
again and to be able to face the future with optimism. There
are a couple of other anti-depressants that work in the same
way. I think Zoloft is one. Best of luck.
Glenna
Talking With Family Members
FAMILIES AND HONESTY
Can anyone offer advice to me as I prepare to host an annual reunion
of my two sisters? One is trying to beg off because she has just
started a new job. This sister believes “Your surgery is over, just
put bc behind you and forget it” but I know the subtext is “I want
to believe it’s over and I want to forget about it.” We lost a fourth
sister to bc in 1996, which neither of the older ones believed would
die, and now their youngest sister is diagnosed with it, too (me). I
feel (from a song in “Gigi”) that my “forever is much shorter than
before.” I can’t pass up important experiences in 1999 because I
don’t know if I’ll be around to experience them in 2000. This was
true before my diagnosis, of course, but I didn’t realize it then. It’s
a rotating hostess thing. I’ve been preparing my house and guest
22
room and it is one thing that has helped with my recovery. I will
feel the whole thing was in vain if she doesn’t come. But if I point
out how I am looking at a vastly shortened life span, statistically,
both of my older sisters will just write it off to being neurotic and
crazy. No one but us on this Forum and other groups of bc patients
understands this disease and what it does to you! How can I get my
sisters to understand this without scaring or upsetting them? We
are not a family that is long on communicating emotions.
Dysfunction doesn’t run in our family; it gallops. Still, I love two
of my sisters and I want them here this spring! Thanks for any help
you can offer.
jean214
Jean: As one of four sisters (and as one who lost her mom to
bc twenty years ago) I hear you. Since this reunion is so
important to you I think you have to level with the sister who is
reluctant to come. First you might consider that she is afraid
to come for the very reason you WANT her too — if she rushes
to your house she may have to deal with the fact that you
MIGHT not be there forever. Maybe, you could take the “NONE
of us will be here forever so lets get together NOW!”
approach.Good Luck. P.S.: When I was diagnosed one of my
sisters freaked out — she remains depressed and continually
frightens both my children and another sister by her depressed
attitude; another used my cancer as an intro. to discuss the
many (non-life-threatening) ills of her family; and the third
has been an angel. Upbeat and caring but NEVER intrusive.
C’est la vie!
Barbara
23
You might consider the assertive message approach. Plan four
statements — one sentence each if possible. (1) Here’s the
situation. (2) Here’s how I feel about it. (3) I want you to do
this: . . . . (4) What do you think? After #4, keep absolutely
silent until the other person has completely run down. Consider
what they have to say. If it not persuasive to you, DO NOT
ARGUE, just say “Yes, I understand, but” then repeat statement
3 and wait as in 4, but without the specific invitation “what do
you think?” A few iterations can be astonishingly compelling,
just remember, don’t argue, no matter what the provocation. In
your case, something like: We’ve gotten together on a rotating
basis for years. I’ve really been looking forward to the chatting
and good times and feel kind of [sad, empty, whatever describes
your thoughts best] at the thought of missing this year. I’d like
you to reconsider and come. What do you think?”
Sandy L.
HAND PATTERS.....SIGH
Hello all, am going to ask for a little advice on how to deal with
“hand patters”. My mother, bless her soul, is driving me crazy. She
has it in her head that the doc has said I am terminal, which hasn’t
occurred yet. I have tried to explain to her the difference between
statistics, and what is going on with me right now...to no avail. She
isn’t being pushy, or running over here every day..tho I think she
would like to. She just has been after me to let her help more and
has been more of a “smother” then a mother. I love her dearly, but
how do I get her to back off with out hurting her feelings? Yes
there are days when I really do need a little help, but not too often.
Should I go ahead and let her do extra things for me so she can feel
she is doing something? I know I am not being very clear here, but
it is hard to define what I mean. Please let me know what you
would do...thanks.
Penney
24
Sometimes, giving people their “marching orders” works.
Under that theory, you might try telling her: 1) I’m not dying.
2) I could use some extra help now and then. 3) Among the
things I need help with is becoming completely self-reliant
again as as soon as my physical condition permits. — You did
that last part once in my life, let’s see if we can accelerate it
this time. The theory is that pre-programs her to let go, AS A
MATERNAL DUTY. It might or might not work, but consider
her and see what you think of the odds.
Sandy L.
Penney, this is certainly a tough situation. I know that it’s the
last thing you want to do is hurt your mom’s feelings. Most of
us on here are moms and can understand her great concern.
She is probably very frightened that her daughter has a life
threatening disease and it is hurting her so bad that she can’t
“make it all better”, so she smothers instead. It is a mother’s
worst nightmare that we would lose our children...it is not the
order of how life should be. The best thing I think you can do
with her, is to explain everything to her, your treatments, how
you are reacting to them, what the doctors say, be very frank
about it...it’s the unknown that is bothering her so much and
why she thinks you are dying. If you give her the stats, let her
read some of the posts on here...it will show her that there are
many, many just like you, and that we are all doing very well.
Also, give her specific jobs, errands, duties that she can feel
like a real help to you...she has no other way of fighting the
feelings she has about losing you. Let us know how it goes...just
keep in mind, this is almost as tough on her as it is for you.
Nancy R.
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MOMS SAY THE DARNDEST
THINGS....WITHOUT THINKING
Yesterday, just my Mom and I went to Decatur, to a Hobby Lobby,
craft store. I was walking around, looking for the bird houses. I
came across over 100 angels and had tears come to my eyes. I just
stood there looking at all of them. My mom said, what’s wrong,
with you? and Why are you crying in this store? I told her, that
everytime I see an angel, it reminds me of my ......cancer. She just
said, I shouldn’t LOOK FOR THEM. I told her, that I love angels,
because, even thought, it was a bad time in my life, it was a blessing,
too. I think that just about, knocked her off her feet. She said, You
are glad you got cancer? I said, no, but I‘m glad it happened to me
and not my sister, or her or anyone else in our family. Then, I said,
I have so many friends that I love, so much and they all have helped
me, in ways they will never know. Then she had to sit down, she
was confused.....Well just who are these new people that you say
that you love??? I said, it was all of you. who are reading this, now.
But, she says, you have never even, meet these people and haven‘t
had the time to really know, who they are...Yes, Mom I have. I
have them all in a special place in my heart. Are these the people
who, you say you are going to be with, next July? How can you
afford, all of this? I just told her, I will save everything, I have to
get there. I will, do it, just like, I have with the cancer, if I want it
bad nuff, I can do it. My mom, just said, you, are my special little,
girl. Little, no, but I am her girl. As we were, walking out to the
car, she just kept looking at me a smiling. It was a very, special
day, cause, it was about, my MOM, my CANCER and all my new
FRIENDS. THIS MAYBE SHOULD, HAVE GONE ON THE
OTHER FORUM, BUT THIS WAS, ABOUT CANCER. That
cancer, made me find, all of you. Moms and God works in the
same way, they love us, hugs & love,
Jules
26
What a sweet message. It’s nice when you can spend time with
your mom and get along so good. My mom drives me crazy,
and my kids don’t even want to be with my mother. I’m so glad
that I found these boards to chat on too. I don’t know what I’d
do without them. My husband was telling me that maybe we
should unhook the Internet and I told him noway, nohow. I’m
not about to give up my Internet. Well, talk to you later.
Julie E.
Wow Julie **sniff** (reaches for tissues). One thing I have
found since I have had this “affliction” is missing having my
Mother to share it all with. Keep those precious memories,
they are important. PLEASE say “hello” to your mother from
me here..seeing I don’t have a mother. Show her the calendar
too, then she will see what friends you have!!!!!
Jenny
HIGH RISK.......AREN’T WE ALL?
Okay, gang. I have some questions. 1) What constitutes “high risk”
with breast cancer? 2) Is it only women who have someone in the
family with BC? 3) Aren’t we (those on the forum who have had
bc) all now “high risk”? Shouldn’t we be tested for the cancer
gene? 4) When does family history begin? Can’t it begin with us?
How do I know that my mother would not have had BC had she
lived longer? 5) Are we more likely to get BC again than the women
who haven’t had it but have a family history of it? 6) If we are
tested and find we have the gene, what do we take? Something
besides Tamoxifen? How do we go about getting tested and will
insurance cover it? With all of the news lately, I am totally confused.
Please help my fogged brain clear this up.
Nancy R.
27
My answers as far as I understand them are: 1) High Risk – We
definitely are; 2) No, it isn’t just women with a family history
of BC though I think most of the studies they do are on that
group. I consider all of us who have had breast cancer and
been treated for it as being “high risk”; 3) Yes, we remain at
high risk and yes, we should probably have the gene test; 4) I
believe for my daughter, her family history does start with me.
My understanding is that genetics is the cause of most cancers
under 50; 5) I think the likelihood of recurrence has to do with
what stage you are initially diagnosed with and how you’ve
been faring all along; 6) There a whole litany of info on this as
they have really started to get into this subject. I know they are
targeting that group in their research right now. I believe there
is gene therapy going on right now. –
Lynne
This test would be VERY useful to me. I was adopted so I have
NO family medical history. Another story. Anyway, I want to
have this test done for my daughter, Katie. I just want to know.
I was 34 with positive hormone receptors. This would be very
helpful to me. I just want to know.
Susie
FRIENDS
TOP 10 THINGS FRIENDS SHOULD DO
I can’t say enough about this new place! I only wish I had known
about you in Dec. and January when I was going through biopsies
and surgery decisions. I haven’t seen much about dealing with
people, which has been a real hard issue for me. I was so frustrated
by people I thought were good friends actually RUN away from
me. It frustrated me so much I wrote this top ten list and posted it
at work and e-mailed it to some too. Here it goes! Aimee’s Top 10
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list of things to do when a friend has breast cancer: Not on
Letterman; He’s too scared to say the word! 1. At least say Hello to
me 2. If you can’t speak, touch me 3. You can say CANCER, I
already know I have it 4. Remember I am not contagious 5. Don’t
feel guilty if you think your chances are better because I was the
one in eight; I have to admit I felt that way once too. 6. Don’t be
afraid to cry; it may be time for me to do so once again. 7. Pray for
me. 8. Pray again. 9. DO NOT tell me you are overdue for a mammo
because they are a drag or you’re embarrassed; mine saved my life.
Get your butt ( or boob) in that vise NOW!!! 10 (Actually 3b) Say
the word CANCER ten times and it is no longer the boogie man;
just something to beat with courage and intelligence. Real #10.
NEVER stare and ask “Which one?” I hope you can relate. Pass it
on if you feel someone needs it. Peace,
Aimee
Hello my friend! I will have to write this down as I am out of
ink, but wanted to tell you that I love it!! I was pretty lucky, I
have gained more new friends then I lost when I started this
cancer thing. I did lose a few that were very close friends, but
that was three years ago, so the pain isn’t quite as sharp now.
I guess I never quite understood why people pull away? I know
the three close friends I lost were not shallow people. don’t
fret about them, if they come back they do, if they don’t they
don’t. She also told me to “weed my garden” so to speak, by
getting rid of the negative people in my life, which I have I
think it was like your list, they didn’t know what to say, so they
said nothing. Then after a long time of saying nothing, it became
harder to say anything, so they just drifted away. A good friend
of mine told me, done too. The ones that never had anything
good to say or do. A couple of these were women I was working
with at the time, and they drove me nuts! Finally I just told
them that if they couldn’t be at least positive about something
once in awhile I couldn’t talk to them anymore cause they were
“sucking away all my positive good thoughts and energy”. It
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actually worked! I mean they still spent a lot of time b######g,
but they also started talking about good things in their lives
too. Even tho I no longer work there, they have gotten into the
habit of mentioning good things that have happened to them
too. One even thanked me for making her realize how she
sounded to others, cause she was always wondering why no
one would take their breaks with her! I kinda got off subject
here, but just wanted you to know that I loved your list!!! HUGS
and much love,
Penney
WHAT’S THE STUPIDEST.........
The truck phobia that most cancer survivors feel (editor’s note:
please see “Humor” section) made me start thinking about the stupid
things that people say. I know they are just uncomfortable or don’t
know what to say and most of the time I appreciate the fact that
they try. What I was wondering was: What is the stupidest thing
that anyone has said to you about your cancer? It was a tough
choice but here is my stupidest (and my favorite). I was at the state
geography bee watching my daughter and many other brainy kids
compete for the right to go to the bee in Washington. I was in the
middle of chemo and that meant no hair and hot flashes. I had
gotten quite used to taking my hat off at the start of a hot flash, no
matter where I was, and putting it back on when I cooled down.
This happened during the bee. Much later at break time, this lady
made her way across the room to me to let me know that she had
NOT been staring at me. She went on to say that my bald head was
STUNNING! I said, “Thanks, I guess.” I think she felt better
after that.
Jill
Well, Jill, I can think of two stupid things that family members
have told me. First, my sister said,“Well, your cancer isn’t
that bad!”. Second, my future mother-in-law said, “You are so
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lucky!” Now, my response to both of these were “huh?”. Makes
one think, doesn’t it? It will certainly be interesting to read
the posts of others.
Susie
Jill – What a funny story! I find that when people say stupid
stuff they are usually trying to be nice and are just misguided.
What was strange for me was what someone DIDN’T say. I
met friends for lunch whom I had not seen since being
diagnosed – over a year! They had traveled from
overseas....Anyway, we met for lunch, walked around, talked
and the subject of my having cancer EVER CAME UP! They
never asked how I was doing or anything.I was bald and
wearing a hat! Wow! it was really strange and I laugh when
I think about it. It was especially strange for me since battling
cancer was and is a big thing in my life....
Cynthia
The (surprisingly) ONLY stupid comment was by one of my
friends at church, right after I’d been diagnosed with LCIS
and was sharing the fairly optimistic prognosis with a group
of friends. She said, “Well, I don’t care what people say.
Everybody knows that all the women with breast cancer die.”
My husband, who was standing nearby, went white as a ghost
and left the room. We’re still friends (more like acquaintances)
and I have no idea what possessed her to say something so
stupid that day. I think she probably didn’t know what to say,
so she said the first thing that popped in to her head, dumb as
it was!
Rita
31
WHAT WOULD YOU DO TO HELP A FRIEND
Hi again, wonderful people! Advice, please? As you know, a
friend from support group (I’ll call her Sally), has been having a
recurrence since Nov. She has been through a lot and I have been
with her through all of it - at Dr. appts etc. she doesn’t have good
support at home) and even on a wonderful vacation. She is so funny
and wonderful - I really love her. Recently we found out together
at her Dr. visit that her chemo doesn’t seem to be working and this
was a big blow to her of course. Then she starting avoiding my and
everyone else’s from group’s calls. Last night she admitted to me
that it is simply too painful for her to be with me (not me personally)
since I am in remission and she is so sick and sad and angry. I think
she feels that way about everyone from group. I told her that’s fine
and I’ll never quit loving her. I told her she can call me any time
but I know she doesn’t want me to call her. I am FINE with this
and I think I might well feel the way she does if I were in her
shoes. She needs space and has been smart and trusting enough to
make that clear. Question: How can I be a good friend to Sally
now? Should I give her time and then call? Should I send her an
occasional card or would that be pushing her? I want her to know
I am here if she needs me. You know that sometimes drugs and
pain and isolation can make you forget that people are thinking of
you. Interesting - you think about people who are caring for
someone who is sick needing space, but it never occurred to me
that Sally may need space.
Cynthia
Dear Cynthia, I must agree the card sending sounds like the
best idea. I’m sure your friend will appreciate getting them,
and know you still care. This way she can receive and read
them and yet not have to deal with calls or personal visits until
she’s ready to handle them. How sad this is for both of you and
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what a good friend you are for caring and not giving up on
her. My best to both of you.
Love, Debbie
Hi Cynthia, You obviously posted late at night as your first
two replies are from Australia!! The experience that your friend
is having is unique to her and, sadly, no-one can walk this
road with her. Only she can decide how she wants to do it and
certainly I think her honesty is to be commended - this is not a
time for her to be worrying about the feelings of others. You
are a good friend to her in that you understand and don’t feel
hurt or try to lay any more of a burden on her. I agree with
Ann - I would send her a card in a few days, letting her know
that you are always there for her if she wants you, and follow
up with another a week or two later. Even if she chooses not to
see you I am sure she will be warmed by the evidence that you
care.
Paula from Sydney
SURVIVING CANCER AND THE HOLIDAYS
Hi everyone, Well, we are about to enter 4 weeks of
craziness...shop.wrap,box,bow,return...
Eggnog,shoes and dresses that don’t fit and the search of the perfect
pair of nylons. The last 2 Christmases were my own little hell, 2
years ago on Christmas eve I was diagnosed with Cancer, last Christmas I was still going through chemo and it’s physical and
EMOTIONAL strain. I went to my co. party and was seen for the
1st time by many co-workers, most were very kind and supportive
a few were real fools. Staring across a crowed room at the girl in
the black dress with no hair, yep I went “a la natural” just a little,
little fuzz. I felt good about it, others thought I might have opted to
wear my wig.
If they only new how much I hated the wig and some of the things
33
it stood for! Anyhow, I could go on and on...my point is that this is
a Wonderful time of year, we need to remind our selves of this. We
will be faced with some challenges that can throw us off and make
our loved ones uncomfortable. I have made a sound decision that
no one, not even ME, is going to ruin my holiday. Who cares if my
dress is tighter than last year and I choose not to obsess about
getting the perfect nylons anymore...I AM HERE. Loving and
living each hour, won’t you come dance this holiday season?
jingles,
Maureen in Conn.
Maureen, what a wonderful attitude. I would have never showed
up at a party with no hair. I guess I’m too vain for that. But I’m
glad that you could do it and not let it bother you in the least.
I hope you have a very nice holiday season.
Julie E.
Hey girls, A year ago I was smack in the middle of chemo and
radiation. I went to hub’s Christmas party and everyone was
staring at the puffy blimp. No one would speak to me unless I
spoke to them. Guess what, I made it a point to speak to all of
them!!!! I was groggy and wobbly and missing some of my
hair, but I went out and felt half way normal and ate steak and
chocolate (two of the food groups) with my darlin’ hub.
Maureen is right, none of those people go home with you.
Cancer is a wake up call for everyone. The unfortunate deal is
we are the one who have to face it, together or alone. Those
outside the circle can say tsk, tsk, and go home and forget it.
Those people need some education. However, you can lead a
horse to water... I have gained 25 pounds from chemo and
tamoxifen. It ain’t coming off. I have accepted it, but I still
give it the harvard try. My weight is in the category with my
house cleaning. If anyone came over to see if I have dirty dishes
in the sink, they can go home!!!! My husband, son and parents
have been nothing but supportive. There are two friends at
34
work who have been there for me everyday. I count up the tally
and I am one of the most blessed and fortunate individuals on
the face of this whirling mud ball. I will put my feet up this
mornin’, read the Sunday paper, and thank God I was able to
walk to the end of the driveway in the sunshine while admiring
the Jacob’s coat rose bush. Love to you all,
Tami
WHAT A FRIEND SHOULD SAY
Hi everyone, I have a friend who is undergoing a mastectomy
today. I started reading all the “stupidest things” people have said.
What I’d like to know is, what kinds of things *should* I say to
encourage her? Should I initiate talk about the surgery, how she
feels? “How do you feel?” just doesn’t seem like it’s enough. Also,
over the next few months, what kinds of things can I do to help her
and her family (2 kids, 5 and 8). Her mother is there to help her for
about 6 weeks, but after that I’d like to offer to help, but I don’t
want to just say “Call me if you need anything.” I’ll be stopping
by the hospital tomorrow (assuming she’s up for visitors) so any
suggestions short term or long term would be appreciated. Thanks,
Kathryn
You are a great friend, Kathryn. I wish everyone had a whole
truckload of friends like you when they start on this journey. :-)
To help your friend, let me share some of the things that friends
did for me that helped me a lot:Touch her. Amazing, but a lot
of people didn’t want to touch me after my surgery (wouldn’t
want to catch that nasty cancer virus, would we?) My friend
Janie would come over and hug me and hold my hand and
braid my hair and give me a footrub and just yak about stuff.
She would always ask if there was a place she shouldn’t touch,
like the tops of my arms and stuff. To have her come over and
sit next to me on the couch and give me a hug was incredibly
comforting. What are the things you would want help with if
35
you had just had surgery? My neighbors arranged to have my
garage swept, my garbage taken out, my shrubs trimmed, things
like that. I came home one day to find all the outside windows
washed. One neighbor (and for this she will go straight to
heaven when she dies) did the dog poop scoop thing. Clean
her oven. Polish silver. Organize her pantry. Bring over some
photo albums and help her get pictures organized. If you make
a casserole, make 2. If you have to run to the post office for
stamps, pick up a book for her. If you have to go to the bank or
the cleaners, see if she has anything to go there. Tell her, “I’m
going anyway, so you’re not imposing.” That will free her up
to ask for help. Take her kids to a movie. Take HER to a movie.
Bring over some books you’ve read. Getting a video? Call and
ask if she wants one too. Check out some CDs from the library
for her. Send her a card, phone often, let her know that there’s
nothing you aren’t willing to discuss with her, and at any time.
Find her a lucky rock. Collect makeup samples for her. Pray
with her. Go for a walk. Offer to go with her to see her doctor
and take notes. Make her a hat to wear to chemo. Get silly
with her. Talk about things other than cancer. You have an
opportunity to be an integral part of a very spiritual journey
with your friend. Nobody knows what the destination is, so
that makes the trip something to be cherished. Please let us all
know how things are going. Oh, and send her here so we can
take her on the trip in our bus. xoxox
Jane
I second all the ideas mentioned above by others on this forum,
and encourage you to try to listen to whatever she has to say
without reacting in horror. It is not possible to have cancer
without having thoughts of death, loss, mutilation and illness.
Most people look so upset when you talk about any of these
things that cancer patients learn to shut up and put on a happy
front right away. Also, please remember that as long as she is
on narcotic pain medication, she will have very little short-
36
term memory and may not even remember you came to the
hospital. She also may blurt out un-mannerly things, under the
influence of drugs. Don’t hold it against her.
jean214
HUMOR AND LAUGHTER
ANYONE KNOW WHERE I CAN FIND A
STUDY ON TRUCKS?
I was just remarking to Barbara, and because I heard it AGAIN
today...is there a single cancer patient out there who has never been
told in some fashion or other (albeit very sympathetically ) that
JUST because you’ve been diagnosed with cancer, doesn’t mean
anything about life has changed! “Heck, aaaaany of us could walk
out onto the street tomorrow and get hit by a TRUCK!!” My family
says it; my friends say it; every single doc I’ve seen has said IT; the
counselor says it ALL THE TIME; the danged NUTRITIONIST
even said it! What I would like to know is where all the studies are
on the dangers of trucks to cancer patients! I’d like to know exactly
how MANY cancer patients in fact DO get hit by trucks. I’d like
to know how many people who get hit by trucks HAVE cancer!
And therapy...surgery, radiation, chemo....do they help prevent
BEING hit by trucks???The longer I live without being hit by a
truck is it more likely I will never be hit by a truck? If I’ve already
been HIT by a truck, will taking Tamoxifen help prevent my being
hit by a truck AGAIN????? When my counselor threw the old
truck at me again the other day, (frustrated to the dickens by
continuously hearing of all these trucks that are going to get me!)
I said to him very directly...I am going to pull out a gun, hold it to
your temple, tell you that I may or may not pull the trigger, and that
IF I do, I will give you no real warning per se, just little signs here
and there...like I might start to fidget; or press the gun harder against
37
your temple; or start laughing maniacally out of control. I bet him
$20 that he’d have a hard time carrying on with HIS normal
day...making calls, meeting with patients/having lunch with the
guys/concentrating on the road when he drove home at the end of
the day...and I bet him that even 2 weeks LATER, he wouldn’t be
feeling much better as long as I continued to follow him every
where with a gun to his temple. BUT!!! More certain bet of all? I
bet him $200 he wouldn’t spend his time looking out for TRUCKS!
And that, danged right, life would suddenly feeeel different. A
man who lives in our town here was badly crippled years ago when
he was hit by a mack truck. He has the most fantastic attitude...the
attitude everyone aspires to have in the midst of trials and pain...such
a positive person. If you ask him what happened? He tells you he
had a mack attack! There’s no connection between this man and
myself except that he was hit by a truck, and everyone keeps telling
ME to look OUT for trucks. But that one connection reminds me
of him every time I inevitably hear the truck reassurance coming at
me again....and remembering HIS attitude, it helps me with mine.
Oh, but I am rambling! What’s new???? Results for my biopsy
didn’t come in in time...so I have to wait till Monday now. Gee,
hope I don’t get hit by a truck in the meantime! Thanks for listening
all....the venting clears the stale air in this old house of mine that I
call mind and body smile. Love and my prayers to all,
Linda
I love this forum and I so appreciate your contribution! I came
on-line tonight feeling quite low and LOL when I read your
all-too-familiar lament. It feels so good to know I’m not alone
in feeling aggravated by that overplayed response to cancer. I
can’t count the times I’ve commented to friends or strangers
about the agony of the proximity of “uncertainty” in my life
since BC diagnosis, only to hear the Mack Truck comeback.
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I’ve even had people go so far as to say “You’re lucky to come
face to face with the uncertainty that is a reality for everyone.”
I am? Maybe so, but I sure don’t need to hear it from someone
who hasn’t been there. Thanks, Linda. And I do hope you get
good news Monday.
Orina
Linda – you really made me laugh with this one! I usually
hear “hit by a BUS” and my response is “Hey - I’ve seen the
bus and it is heading straight for me!”
Cynthia
NOV. 13TH - EEK IT’S ALSO FRIDAY
If I had only remembered that Friday is the 13th, I WOULD NOT
BE DOING THIS BLOOD GASES TEST TODAY. What is wrong
with me.....nothing. This day will be a good one (I sure hope I get
there in one piece!)...5 car accidents on Friday the 13th. Also, I
had my hands in a lot of water today – cleaning all the roses – and
I had a shock from the monitor. I just sat there for a few seconds
and then screamed. I’m fine, just scared the willies out of me.
Could use some good vibes from out there for tomorrow.
Jules
Good luck, dear girl! I flew on a dang airplane today on Friday
the 13th!!!! Bad weather from Texas across to Alabama. Scared
to death. Landed safely in Atlanta and had two beers and a
prayer. Of course, I quickly took up all the bad habits I swore
I’d give up when the plane was bumpy!
Doc Dawg
I have my oncology appointment today and my two hour
infusion, but I am not superstitious. I know everything will be
fine. A funny story though. My Mom’s birthday is May 13th.
39
Three different times that it fell on Friday the 13th, she broke
three different bones in freak accidents. It has been a longtime joke in our family. Good luck with the blood gas test. I
remember them from having pneumonia. It was not a pleasant
test. I will be thinking of you.
Glenna
THE DAY THE FORUM WENT DOWN
As everyone clearly appreciates this forum SO much, I thought
some of you newer ladies might like to know about when the forum
went down. I think it was about four to five months (no doubt
others can confirm this), when the posting rate suddenly increased
so rapidly that the forum as it was set up at that time couldn’t cope,
and WENT DOWN!! For THREE days we all got a message saying
that we had been denied access to the site. I can tell you that there
were a lot of ladies who suddenly realised just how much they had
come to depend on BCANS. We were all pretty frantic! Eventually
www.paula was able to fix the problem (big thank you) and we
were “on the air” again. A very nasty experience, hopefully never
to be repeated.
Paula from Sydney
I remember it well! Several of us had been involved in quite a
debate and when the forum went down, at least two of us (myself
included) jumped to the conclusion that maybe we had been
“booted” from the site…….LOL!! It was so funny!! We were
all quite relieved to have it back up and running and to know
that it was still here for us. Quite a memorable event. Love,
Glenna
Geesh, Paula....does that make us BCANS addicts?!? Guess
so. But there are worse vices for sure! That was a frantic time
and I know that it took a few months off of www.paula’s life. If
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the growth keeps up like it is going, we’ll have to stand in line
to post!!! I’d forgotten all about that time, but remember thinking it was just me....what had I done to cause it? Maybe
everyone felt that way, too!
Nancy R.
SHARING WITH OTHER SURVIVORS
THE BUS TO LYNNE’S APPOINTMENT
To all those who are fairly new here, we occasionally crank up the
old bc bus, pick up anyone who wants to come along, and travel
our way to a BCANS’ers side for support. (Fictionally that is).
This time it’s headed for Annapolis, Maryland to accompany Lynne
at her Monday Herceptin treatment. (Bet she’s just thrilled to hear
about this!
Everyone must bring something that they think would be
appropriate, and let me know where you live so I can plan my
route. I’ll be driving the rickety old thing (think Partridge Family), so
I need to do some mechanical work on it before this extended trip.
Snow tires will be a must to get you all who are in the cold countries.
This bus makes the trek to anywhere on the globe BTW,(think
Santa’s sleigh without the reindeer!)
I believe I’ll be bringing along with me a cassette of nature sounds
for Lynne to listen to as she is having her infusions...bird’s singing,
brooks babbling, ocean waves pounding, summer breezes blowing,
wind whispering through trees, and the sound of a baby laughing.
I’ll throw in a few scented candles to complete the package. Lynne,
make sure you take your headphones!
So, who’s on the bus?...Debra, isn’t this the same bus you speak
of? The one to that City of Hope? No doubt. So hop on, we only
have a few days to get there. There is room for everyone - pack
light...I’ll also be supplying the wine. See you all soon,
Nancy R.
PS...Lynne, you might warn your doctors to expect a crowd!
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Hi Travelers of Love:
First and absolutely gotta have...I’m bringing my upright bass.
Plus my music stand, and sheet music and amplifier, and
speaker. I’m not trying to hog up all the room on the bus, but
geeez this stuff is BIG! I have songs to sing for Lynne, and
music to soothe her soul as she starts her way down this new
bend in the road. And plenty of sheet music to go around to
each of our 40 member choir. This choir of angels, just for
Lynne.
AND...Kate and Nancy, I AM bringing my driver’s license (it’s
expired...but don’t worry, I’m a fast talker...if we get stopped
just leave it to me...I will get us either: 1) off with only a warning
ticket for having too much love oozing out of the windows or
2) bail money!
My bags are packed...see you soon.
love and peace from the best driver around!
Debra the Bassplayer
Nancy,
Ok.... I’m waiting for the bus, at the foot of Pikes Peak (I live
right here). I’ll be the one with the tie dyed T-shirt and the
green parrot on my shoulder. My parrot, Clover, has some pretty
cool songs to sing for Lynne, and I’m SURE he’d join in with
Debra and her bass... and sing.
Save me a seat... I’ll be waiting for you all!!!
My love to Lynne, and all of you!!!!!!
Mary Shuck
This has to be a record...101 responses on the bus post...wow!
Now that’s a bunch of love.
So it looks like this. 61 women. 4 kittens, 2 cats, 6 dogs, 2
birds, 1 flock of green parrots, 1 koala. To eat...listen to this
42
menu! crab cakes, enchiladas, eggplant parmesan, fried okra,
oysters, coffee cake, french and home-baked bread and an
assortment of cheese and snacks. For dessert - lots and lots of
chocolate (specifically “quality chocolate”), fudge, brownies
with nuts, and to drink - lots of wine (that’s good), flavored
teas, green tea, essiac tea, hot chocolate, Starbuck’s coffee,
cappucino, and a particular favorite - Canadian Rye Whiskey.
For music...this ought to be rowdy enough...Bruce Springsteen,
Frank Sinatra, accompanied by a Choir of Angels, a violinist,
a cellist, a bass player and a harmonica!
To comfort Lynne: a cashmere afghan, warm Florida Sunshine,
pillows, flowers, tissues, teddy bears, a masseuse, a view of
the sea and the reflection of the sun, sea shells, meditation
tapes, Crystals and stones, a space heater for warmth and an
Elvis cape to go around her shoulders. All this plus smiles,
hugs, jokes, laughter, tears..and the gift of peace.
The police escort is a nice touch, so we should be getting there
right on time. We’re even bringing our own oncologist!!
SO I’d better get gassed up - I’ve got a long drive. I’ve got to
reach over 15 states, three Canadian Provinces plus Hong
Kong, Finland, England, and Sweden...whew! I’m tired just
thinking about it!
Lynne....in all seriousness, you know we will all...all 61+...will
be right there with you in spirit. We hope this magical bus has
made you smile, and give you something to think about as you
start this new road. We love you so much, and I KNOW for sure
that each and every one of us would be there in person if at all
possible. Love & hugs,
Nancy R.
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EMOTIONAL MORNING
Nurse Rorie wanted me to go up to the 3rd floor of the Medical
Center to meet a 29 year old girl and her husband. She had a
mastectomy a couple of days ago and is going home at noon. It
was the same room Rorie was in. When we entered the girl was
holding on to our book, a present from some friends at church. Her
surgeon came in (Rorie’s surgeon too) and we went into the hallway
while he checked her drains. We thumbed through our book and
started to read, we hadn’t looked at it in months. It stirred up a lot
of emotions. Funny, I speak to large groups on breast cancer but I
was nervous about meeting this husband, face to face. He is a nice
young man and had a positive and supportive outlook. But I could
see the worry and anguish in his face behind the smile. Please pray
for this sweet young couple. They are so young.Hard to express
how Rorie and I felt but I think all you understand. God bless
you.
Doc Dawg & Rorie
Thanks for sharing this story with us. It is always hard to see people
in pain, especially when it brings back the feelings that we went
through. They are so young to be going through this, also. I feel
God has given you a mission and you are such a blessing to those
who’s lives you touch. We will keep this couple in our prayers.
Fondly,
Glenna
44
Hey dude, Sometimes the deepest feelings are the ones that
spring up from the well of your soul. I think that these feelings
are the ones hidden even from ourselves because they make us
so vulnerable. Since they are hidden, we don’t remember them
on the surface. Then, something happens to tug on these
memories and there they are in your throat. It is hard when
this happens to me because I am out of control at this point
and surprised by the turn of events. Plus, I am at a loss to
explain it to anyone else, let alone myself. I try to tuck this
stuff away and claim that it is dealt with. It is just a real
fumbling, humbling experience to realize that these feelings
can flood back on you with the same urgency of the original
experience. Talking to others who are in the mire of breast
cancer isn’t easy for the compassionate. You want to give them
the “all clear”, but you know most of what is ahead isn’t fun.
You offered them hope and love and I say God bless you and
yours. Enough of me, I am babbling!!!!!!! May the road rise to
meet you,
Tami
(ON PAIN)...YOU ARE NOT ALONE...
Dear Jules, My heart goes out to you when you describe your pain.
I have been struggling with the chest and arm pain for the last five
months...so far I have not struck any gold mine. Like you described
I also cry out to Lord when it becomes too much to handle in the
middle of the night. There are a no. of times I have woken my
husband at night and worried and talked about it endlessly. In the
beginning, I was a sort of adamant fool...didn’t want to pop in
painkiller pills. Tried everything else like acupuncture, exercises
etc etc...they did help but only marginally. Then on reading Sandy’s
postings many a time, I realized I should take the necessary
painkillers..the whole day was a struggle without them ...(you see,
45
I started with the night dose only and nothing for the day). Then I
slowly got on to the day time dose as well. They tried lot of drugs
like Amtriptyline etc etc with horrible side effects (for me). Just
when I thought that I have achieved a sort of balance of these
painkillers which helps me 80% of time, another bombshell
dropped. Now I am having lower back and hip pain as well. The
X-ray is all clear...but waiting for the bone scan appointment. The
doctors at the pain management centre told me that “Voltaren” drug
which I am taking 200 mg/day is not good for long run. So, they
switched me to Morphine. I was too skeptical...but I tried for few
days...well my worn-out body cannot take it. It just wears me out
and I am so fatigued already. So I am calling it quits. My naturopath
has suggested me to go back to the most basic painkiller
“Dologesic” (ibuprofen)...and see if my pains can be managed.
Talk about going round in circles... Well I hope Jules you do find a
good doctor who understands the root cause of pain ...and gives
you a good relief. You will be in my prayers. By the way how many
of us are on daily painkiller regime for a long time? Please do
answer....I feel so alone in my struggle against this demon....pain
et al. Best wishes.
Arvinda
Arvinda, I had a lot of pain for a lot of years. I had a disc
removed in my neck. Had lost most of strength and reflexes in
my arm. After surgery I had such pain in my right arm that
many days it was all I could do to lift my fork to eat. My husband
had to cut my food. The doctor gave me pain pills and muscle
relaxers. They didn’t do much good. Sometimes the only way
to get relief after medication didn’t help was to take a double
shot of slo gin or anything else I could get my hands on. It’s a
good thing I’m not an alcoholic. Then I went to a chiropractor
and he kept me going for three years. I went through a period
46
when I tool 16 aspirin a day. Finally I went to an osteopath
and she worked on my back and gave me medication for
arthritis and I have been doing well since. I did find that pain
causes the muscles to contract which causes more pain. It gets
to be a vicious cycle.
Nancy B.
ARVINDA, It is so nice to have someone out there that knows
what I’m talking about. I had another bad night, and to top
that off, we had sleet, rain, snow and 59 miles a hour winds, so
I didn’t want the pain. I was scared, driving in the wind. My
car was all over, the road. Then as pulled into the hospital ,
ER parking, it hit again. I just don‘t understand, what it could
be. Now, after the heart cath, today and the one doc saying it
could be arthritis in the chest wall or heart wall, now that
scares me. I haven’t had any pain meds for this. I did take a
ibuprofen(sp), from my mom last night. She has the pain in her
shoulder, I think it called FROZEN SHOULDER. She also has
the pains in her heart wall. With her breasts removed, cause of
fiber cysts. She has never had the big c. I just hope, my boobless
chest doesn’t catch cold, having no boobs on for 30 days. I
remember, when going braless was cool, NOT COLD. Thanks
for your help and kinds words, they always help. Love ya, &
hugs
Jules
INTRODUCE MYSELF
Hello everyone. I finally found what looks like a wonderful place
to touch base with some people sharing my journey. I was diagnosed
at stage three a year ago with one node under my arm and two in
my neck. I have had chemo mastectomy bone marrow transplant
and radiation and am now in remission but scared to death of
recurrence. Are there any other stage threers out there who can
47
give me a “you go girl?” Also, a friend from group just found
cancer in her liver, lungs and bones after chemo and radiation. It’s
hard to see her suffer and hard to walk this journey with her.
Comments? Thanks.
Cynthia
Welcome, you’ll meet a lot of great women and men here to
offer you support and ideas and shoulders to cry on. Glad you
found us. (I have LCIS- lobular carcinoma in situ - and have
found out so much information from friends at this site.) Feel
free to ask anything, there are a lot of brains to pick here.
Looking forward to hearing more from you.
Rita
Hi Cynthia, I am stage3A, adriamycinX4, cmfX6, radiation, 2
taxols as primer for stem cell and a partridge in a pear tree!
no, stem cell 9-96, at Duke U. Protocol was cytoxan,
cisplatinum 24/3days, 4th day BCNU(carmustine). I am 45, 3
kiddos 8g, 12b, 13b, super hubby, dx. 12-95 I was 2 yrs out
from sch&t sept 29!!!!!! I think all of us fear recurrence, bc
has no preferences to who it chooses. So I take one second at a
time, don’t look too far forward. Always be in the present and
enjoy every second of life! My stem cell felt like I died and
came back a brand new person!!!!!!! Please feel free to email
me, I live in Florida, {{{HUGS}}},
Sassy
Cynthia, Welcome! I haven’t been through what you have, but
was diagnosed in 1995 and still deal with the fear of a
recurrence. You’ll find an incredible wealth of knowledge here
on this forum and they’ll be here for you all the way. Anytime
you’re fearful, lonely, happy, have questions, or whatever, just
post here and you’ll receive plenty of help! Take care of
yourself.
Sue in Denver
48
AM I CRAZY TO HAVE THIS FEELING?
(I feel my best when I’m around other cancer
survivors)
Hello. I need your input. Since my BC diagnosis, my spouse, and
most of my family and friends are supportive, but they don’t seem
to really understand the constant lifetime struggle of my cancer
walk. Am I nuts? I feel my best when I’m around other cancer
survivors. These individuals are my soul mates. I can meet a
stranger, who has had cancer, and after talking (or e-mailing) for
fifteen minutes, it seems I’ve know this individual for a lifetime! I
find that with other survivors, you don’t play mind games, not
surface orientated or wear masks. I have yet to find a survivor who
doesn’t have a ZEST for life. Survivors truly know how to live and
appreciate each new day. I’m reminded of a song in my church
hymnal that starts out – Morning by Morning new mercies I see –
Also, I’m very fussy since my diagnosis. HOW and with WHOM I
spend my time. I’ve had to detach myself from some family
members and certain friends who are negatively unhealthy to be
around. Another change in my lifestyle is that I’ve learned to say
“no” – extending myself. I need to keep my energy for me. ..to be
as healthy as I can be. (Remembering that immune system.) Do
any of you out there have similar thoughts? God Bless!
Ruthie
Dear Ruthie – I am so glad that you posted this message
today because I was feeling depressed, because, like you,
my spouse, some of my family and friends do not fully
understand what I go through some days in my constant
struggle with having breast cancer. I know they love me but
sometimes I feel as if I am bothering them when I have my
“down days”. I think I have hurt myself by trying to be strong
for everyone else during my recurrence. My radiologist told
49
me that he thought that I was covering up a lot and holding
back a lot of my emotions and he said that some day it would
surface. And now I think it has. I have been crying all day.
Maybe I needed, like you, someone to talk to who has walked
in my shoes and knows the feeling of being alone with this
fear of cancer. I love my husband, friends and family, but,
sometimes they are not the emotional support I need. Again,
like you, I feel my best when I am around other cancer survivors
or talking to them on this board. I guess I am just feeling a
little down today, so thanks for listening. So, no, you are not
crazy for having these feelings because I can relate so well
today with those same feelings.
Pauline
Hi, Ruthie. Up until now I’ve been only a reader of this forum
but your note really struck a chord. I was diagnosed last
October – had a mastectomy (7 cm tumor), chemo, radiation
and now Tamoxifen. My friends and family used to call every
day to see how I was doing and I loved it. Now my hair is back
and I’m physically strong again and I don’t hear from anyone
anymore. But this post treatment period is a lot harder than I
anticipated. When I mention cancer, people sort of treat me as
thought it’s time for me to get over and move on. Well, as WE
all know, you never get over it. This forum is so great because
everyone understands. I also have a support group of women
that were diagnosed at about the same time as me. We meet
once a month. That’s really the only place where I feel
comfortable saying what I feel. We cancer survivors do share
a special kinship. I saw a woman in a parking lot the other
day,with that tell-tale short hair-do. I walked right up and
asked her if it was a “chemo-do”, She said it was. We talked
like sisters for over an hour. Not too many strangers you
50
can do that with. I think we cancer survivors have a special
take on life. I seem to experience life much more VIVIDLY
now.. And I don’t sweat the small stuff. Well, thanks so much
for just being. I cherish you all. God bless.
Jill
NEED A SUPPORT FIX
Hi all, I’m coming to you all because my non-cancer support group
does not quite understand my situation. I am coming up on my
one-year anniversary of the big news. This time last November, I
was preparing for an excisional biopsy because the stereotactic
showed atypical hyperplasia with microcalcifications. I had the
biopsy done on Tuesday before Thanksgiving (not wanting to miss
too much time from work). On December 2nd I had the surgeon
visit where I was given the news. When I talk about my feelings
with my family and friends, they all say that I should be happy
because I am here to celebrate it and I am. But I am also very
anxious about the future. This past year was so full of diagnosis,
doctor visits, treatments, mammograms, more doctor visits that I
haven’t had much time to think about it. Now all of a sudden it is
coming to the forefront in my mind. I know that you have all been
in this spot before and I guess I just need a little nudge to get me
through this. I just this week received copies of my medical file
from my primary care physician that I requested. I asked for anything
in my file pertaining to my BC. I already had the path reports, but
did not have the reports written by my medical and radiation
oncologists and my surgeon. It is funny how you can have them
tell you that your prognosis is very good, but you can’t believe
how good it is to see it in writing especially when they are writing
for other doctors. I am keeping my own file on my BC because
with insurance now days, you never know when you will need to
51
see someone else. I have done this for many years with my mammo
results. It just makes me feel more secure. I have read the medical
oncologist report every day this week and it still makes to smile to
see “prognosis is excellent”. Thanks for listening and helping me.
Pat K.
Pat, I had the one-year anniversary in early September. I was
actually kind of depressed because I kept reliving those
moments. I know how you feel. It was easier during treatment
because I felt like I was doing something to fight. Now I know
a positive frame of mind is the best thing now. It is hard living
in the now, but I practice it daily! Sometimes I have to take a
break from everything that has to do with cancer. Then, I realize
the rest of my life will involve cancer no matter how much I
wish it to go away. Know how you feel. Hang in there kiddo.
Email me if you like.
Tami
Pat, I won’t be reaching my first year until next Feb. of 99.
But I want you to know I care and I will be praying for comfort,
peace and good feelings during this time. Love you .
Sheila F.
Dear Pat,
I had my surgery in 1995 and still have moments that I relive.
Today I had to go to the same floor where I had my previous
surgery and I felt some of the old feelings consume me. But
rest assured that it does get a little easier as time goes by.
None of us, whether we have breast cancer or not, have been
guaranteed what tomorrow will bring, so it is very important
that we live for today. It is something that I am slowly learning
and you can do it too. Life and our loved ones are too important
52
to waste unnecessary thoughts on cancer. Yes, it is a part of
our lives, but not the essence of who we are.
Hang in there and you’ll be fine.
Sue in Denver
HUSBANDS
YOU ARE NOT THE ONLY ONE
In October, after a routine mammogram, they saw some
calcifications in my wife’s breast that they did not like the looks of
— so they went in with wire guides to do the equivalent of a
lumpectomy of the area. They did not get it all and it was invasive
ductal cancer. So they made plans to do another lumpectomy. Meanwhile my wife got ticked and went down to Duke to get checked
out. At Duke they found another area that did not show up here
that looked suspicious and they did a needle biopsy — and while
they were in there, they sampled some areas that looked clean (I
know you don’t want to hear this) and all areas turned out to be
cancerous. Then after the mastectomy (December 21) and
reconstruction (8.5+ hours of surgery) — the biopsy of the breast
tissue showed yet additional areas of cancer that had not been
located either at Duke or here. For better or worse, she had to have
a breast reduction on the other side, and at least the tissue that they
took out was clean, as were the lymph nodes on the cancer side.
The story goes on with additional complications, but they are not
relevant to topic of this discussion. But you might like to know
that she had her second chemotherapy session on Monday, and
so far so good. Tamoxifen will also work on this cancer, so she
will start that after the chemotherapy is over. Sorry if I am butting
in to what appears to be a female discussion group, but they
don’t have a male support group here — maybe someone knows
of an online male support group? Thanks for listening!
Dan
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I came across this Board on Tuesday. I am going to have
bilateral mastectomies with reconstruction - Pedicle Tram next Wednesday. Dan, your wife’s situation sounds quite similar
to mine! With the exception of my having called Johns Hopkins
5 years ago and having been watched carefully since. However,
like your wife, I had the wire guide and the equivalent of a
lumpectomy in January and an undetected invasive ductal
cancer was discovered. Even in the best place, which to me is
J.H., this type of cancer can’t be detected. I’m so glad she’s
gone to Duke! My husband is now very much like you. However,
our children are all grown - a dissimilar factor. He is having
to contend with this situation and we are having to deal with a
new marriage situation. You are wonderful to get on this Board
and let other men know that you are there! I have not posted a
message until now. I will show my husband, who’s name is
Bob, your message tonight. Indeed, YOU ARE NOT THE ONLY
ONE! As I am having what sounds like the same operation
your wife had, only double, it would be helpful to me to find
out what might have caused her to have a hernia. I would like
to avoid further surgery, for sure! Mine will last anywhere
from 8 1/2 to 10 hours. It’s encouraging to me to hear of her
coming out of the surgery and getting back home. Right now,
I’m dealing with a lot of fear, not ever having had to be “on
the table” for anything longer than 1 1/2 hours before, for
mundane things. God bless you and I’ll see if, possibly, you
and Bob might communicate. He knows no other men with our
“problem”.
Marie
Hi, Dan: By now you know you’re welcome but — even better
— you’ve already helped one of us (me) with your post which
a) gave me more ‘proof’ that tram flaps are survivable (!!)
which I need to hear since mine is coming up shortly and b)
reminded us that sometimes this disease doesn’t show up on
our mammograms so we’d better be alert! (I’ve got DCIS which
54
doesn’t seem to show up either; I had to feel it as a lump before
we knew). Hope you soon feel at home; you really can post
just about anything here and get some good advice & sympathy.
Barbara
RECONSTRUCTION -- (Husband’s reaction)
I have lobular carcinoma in situ and have decided to have a bilateral
mastectomy. I was told by my surgeon about all of the different
types of breast reconstruction procedures that are available. I have
been searching the Net and have found a lot of information, pros
and cons. I feel that my breast were not considered of great
importance to me and I would rather not go through breast
reconstruction surgery. My husband feels that this would cause me
mental anguish if I didn’t get the reconstruction. It’s my body! I
don’t think that I want to have reconstruction and I don’t think that
it would affect me as much as he thinks that it would. Please, could
anyone give me any advice? I am 49 years old and have three
teenagers. Thanks,
Sue
Sue: Husbands can be such a sorry lot at times: Didja ever
watch an eight-year-old boy whose baseball equipment had
been confiscated just because he broke a neighbor’s window?
The whining, the petulance, the pouting. The kid has no
cognizance whatever of the NEIGHBOR’S loss; his only
awareness is his own. I strongly suspect your husband’s in his
eight-year-old mode right now—just what you need, right when
you need it. Tell him to get over it NOW, or go stay with his
mommy ‘til his manhood resurfaces. You have too much to
handle right now to put up with testosterone
deficiencies.Perhaps he could benefit from an on-line dialog
with my husband, Sandy: he really is an excellent physician
and counselor. Meanwhile, stick to your guns.
Jan (Sandy’s wife)
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Sue, Hi, I am 48 years of age and also have had a breast
removed. At first I was very interested in having reconstruction.
After my chemo was over I went to a plastic surgeon and after
my visit with him, I decided then I was not going to do it. Some
of the procedures he offered were not for me. Instead I purchased a
prosthesis (?) and I love it. My husband was very supportive in
whatever area I decided to do. I even purchased a swimming
suit last summer especially made for ladies with breast cancer
, and swam and laid out in the sun. It was very natural looking.
Hope this helps you....
Karen
Karen, Thank you for responding to my post. You really are
blessed to have such a supporting husband. Take good care of
him. My husband is so tired of hearing me change my mind
both for and against reconstruction that he seems to have just
given up on me. I have never really wanted to have reconstruction, but I really feel pressured by my husband to get it done. I
was thinking of just having saline implants, but I don’t like the
idea of having something foreign in my body. I still am at my
wit’s end. I have had this problem all of my life about not being
able to make a decision. This is not a good trait to have. Well,
thank you again for your support. Take good care of yourself
and your husband, he’s a gem!
Sue
BREAST CANCER UPDATE ON MY WIFE
Two weeks after her first chemotherapy my wife is starting to loose
her hair in a big way. But she handles that situation very well,
tomorrow we get a wig! It was difficult in the beginning (the thing
with the nausea)and she also has a bad cold. But she just tells now
that she is feeling relatively good. I am very happy as you can
imagine. On an earlier posting I was mentioning the high cost of
“Zofran”. Well I must tell you a good angel came through with
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packs that she never used. Next Wednesday Mary will get her
second treatment. I hope it goes as well as the first. My wife and I
learned so much about this disease from all of you. You have taken
some of the terror out of the word “cancer” and given us hope.
Thank you.
Brian and Mary Jane*
I am so happy to hear that her treatments are going well. Please
give her a great big group HUG from all of us. Please feel free
to come back and ask questions or just get the support that
you need during her chemo. It can be a little tiring towards the
end and she might need to learn to pace herself. Don’t let her
do too much. I know you will be right there helping her along
and she is lucky to have a concerned husband like you. My
best to both of you. Love,
Glenna
30TH ANNIVERSARY
I want to honor my wonderful, caring and supportive husband on
our 30th Anniversary tomorrow. As you might have read in my
bio, we’ve know each other since we were in middle school. No
one could have had a better helpmate through a crisis such as cancer.
I call him my rock! He was also my ears to listen to the many
doctors and their spiels, my common sense to tell me it was going
to be okay to be bald, the shoulder to lean on when I realized I was
going to be bald, and the one person who could tell me that no
matter what, our belief in Christ would get us through, and provide
us an eternal life together. Dave, you have my heart...we shall rock
on the porch together until the end!
Nancy R.
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Dear Nancy R. Boy, we Nancy’s must have a eye for the best
men. I have been married 42 years, met in high school. Like
your husband, he has been my rock during B.C. I lost both
breasts, two years apart. He assured me (actually I already
knew) that I was more than breasts to him. What a wonderful
blessing. We both know that the Lord will see us through
anything and then we get to spend eternity together!! Loved
your post. Happy Anniversary to both of you.
Nan
Nancy, Thank you for taking the time to thank your partner in
such a caring way ! I just celebrated my 1st wedding ann. and
am so thankful that I have had Bobby in my life. When we first
met, I never thought that we would be “a married couple”, it
was not long after getting to know him that I hoped we would
be. Little did I know of the happy and not so happy surprises
that were in store for us. However, I count my blessings
everyday. Congratulations to you and Dave, may your days be
happy ever more. Love and prayers,
Maureen in Conn.
(In Memory of) ARVINDA
I am Arvinda’s husband. Arvinda passed away on 17th December.
The cancer had spread to her liver and progressed very quickly
over a two week period. She was admitted to the hospital on 5th
December. The doctor told us on the 8th that her liver is involved.
We had planned to move back from Hong Kong to India on the 12th
and we flew back home with an escort doctor. She was in the
hospital for another fours days, during which many of her family
and friends were able to visit her. I know that she had some very
good friends on this forum. I was with her ever since her BC was
first diagnosed in November 1994 and I felt extremely helpless to
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see her die. She was 34 and so am I. She never gave up hope right
til the end and showed immense courage through all her suffering.
To me, it seems that the world has ended but I know that all of you
are still out there and carrying on with the battle. You have all
been a great source of strength for both of us and I think of you
when I feel weighed down with my sorrow.
Vidhu
Dear Vidhu, Please accept my deepest condolences. I’m so
sorry to hear of Arvinda’s passing. She was a friend. It hits me
especially hard because I’m 35. You must be devastated. Please
feel free to come back and let us know how you are doing.
Sue in Florida
My sincere condolences to you my friend. She was a beautiful
shining star, and was always so warm and loving. I wish there
was something I could do or say to take away some of the pain
you are feeling. But do know that I am thinking of you, and
sending you thoughts of love and warmth. Hugs and love to you.
Penney
RELATIONSHIPS WITH
SIGNIFICANT OTHERS
SPOUSES
OR
Okay guys/girls!!! Now that I feel TOTALLY comfortable on here,
I have a really really important question to ask. What effect(s), if
any, has your BC experience had on your relationship with your
spouse or boyfriend? I am REALLY curious. My husband, who
used to be my boyfriend —— history (not detailed), as follows: I
was diagnosed 4 yrs. ago 12/2/94. We have been together since 8/
92. My father died 9/28/94. Major loss in my life (will explain
later). I thought that since my husband had stuck it out with
everything including the cancer, that it would not be used against
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me in the future. Meaning now, in arguments. Throw in your face
kind of sh**. Insecurity on my part, big time!!! My marriage is on
the line here, and this has been going on since the birth of my
daughter 10/26/96. Go figure!!!!????!!!! I put my body on the line,
not to go without saying “creating a precious life”, and I am getting
totally poopy treatment. I am totally clueless. He needs therapy for
sure, but says that I am the one with the problems. That I don’t
deal with them. Give me a f****** break....oops, too many ***.
You get the idea, I’m sure. If anyone can relate, please let me
know, and we can get on the chat or something to discuss it. Please
don’t e-mail me, I do not want him to know. Feel free to post here.
In advance, thank you for your response to my much needed
answered question on RELATIONSHIPS!!!! Nothing is ever easy,
huh!!!
Susie
Hi Susie. Since your post was to both guys/gals I’ll take the
liberty of responding from a guy’s perspective, from a guy who’s
been there. Hope that’s okay. My humble advice would be to
start by counting your blessings. Although it sounds like ’94
was a terrible year for you, presumably the BC is in remission
and things must have been looking brighter by the time you
gave birth to your daughter. Your husband is still by your side
and you are willing to ask others how to cope/deal/solve the
problem. That’s a lot going for you. Maybe the responsibility
of caring for another person (your daughter) in addition to
“sticking it out” through your breast cancer experience
triggered something in your husband. If he’s anything like me,
he may be scared stiff that the BC will return and he’ll end up
raising a daughter all by himself. That’s a VERY SCARY
proposition for most guys. Especially when it’s in tandem with
losing a spouse. Ask him if he’s scared. He may never admit it,
but it’s a start and it may get him thinking consciously about
it. Take it slow and easy. If the voices go up too many decibels,
then take a timeout and cool things off. Take a deep breath and
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really try to communicate. If that doesn’t work, then get a watch,
a timer or a stop watch and give each other ten minutes of
uninterrupted speaking time. When you’re done, give him his
ten minutes, then go for ten minutes of TALKING to each other.
I know it’s hard to find the time with a youngster around. But it
sounds like you don’t have the time NOT to talk. You say that
“he needs therapy” and he may say that you’re “the one with
the problem” but the fact is that you both have a mutual
problem, a strained relationship. And you both need to work it
out. You say that you don’t want people to e-mail you because
you don’t want him to know. I say let him know. Pour it all out.
Start by telling him all you have said here.
Joe*
Susie: The state of your relationship is so close to what we’ve
been through I thought it might be o.k. if I offered to talk. If
you read my bio it will probably sound pretty familiar. I was
not aware the pregnancy would produce hormones that
increased the risk of recurrence and fed the cancer. My wife
grew distant after the birth of our son because I intended to
uproot and move our family away from her friends and support
network. She was aware of these risks but did not share her
fears. She hurt her back during labour and the pain did not
subside. Our G.P. told her to quit breastfeeding and get a bone
scan ASAP which was not relayed to me. We went to counseling
late last year but it seemed we went to different counselors at
the same time. What I heard was totally different from what
she heard. In the wake of all that was said and done, I have
found plenty of justification for taking the action I did (editor’s
note: separating from his wife.) Today, I couldn’t be more sorry.
Don’t let the same happen to you and your husband.
Steve*
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Dear Susie: I have just read through ALL the many postings
re this issue, and am very pleased you have brought it up. I
have had a few problems “post diagnosis” with my husband,
in fact after the result of the op came out and the Specialist
told him she had removed a cancerous lump..he rang everyone and told them I did not have cancer!! Everything was fine!!!
I did not know of this until my sister in law came to the hospital and said..”isnt that great news!!” I will NOT - for grounds
of decency, repeat my comment here... But to a more serious
note - I really feel it is FEAR that maybe causes the partner to
not want to accept the situation. Fear that maybe they may
lose us , or fear because they do not just understand. And
maybe they do not WANT to understand sometimes, would
rather go along as if the problem does not exist... There are
plenty of support groups, even here in NZ, so I guess there are
plenty over there in USA...maybe if your husband reads all
these posts from us, he MAY possibly want to go????? ( I wish
mine would) Hang in there - we are all here behind you.
Jenny
I feel for everyone in this discussion. Breast cancer must be
about the worst thing that can happen to a woman. But it is
also about the worst thing that can happen to a husband. I
remember getting married in 1970 and the future looked so
bright. But even then I thought, gosh, the worst thing that could
ever happen would be for Rorie to have a mastectomy. Then
26 years later she had two. If it happened early in our marriage
I might not have been able to handle it. We have to understand
that breast cancer changes us in ways we sometimes don’t
notice but they can be profound. We are simply not the same
anymore. Important things lose importance and little
insignificant things can become huge. We suffer from posttraumatic syndrome, don’t we? When the worst seems to be
over, there is lingering pain that comes to the surface. I think
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the husband often has even extra pressure because it’s hard to
have a “normal” argument anymore. It’s as though any
criticism or problem is because of “cancer”! Does this make
sense? I think you all know exactly what I mean. No solutions.
Guess it all has to go back to love.
Robert
Susie, Wow! I have just read all these postings. This is certainly
a subject that everyone can relate to. I have been divorced
once and nearly a second time when I left my second husband
because he is an alcoholic and the problem was getting worse
and worse and he would not stop drinking. My first divorce
was after eight years and two children and it was very sad the first time in my life that I really felt like a failure, and I
certainly did not want to go through it a second time, with
another child in the equation by this time. For this reason I
probably put up with my husband’s drinking for longer than I
should. I left him twice, returning the first time when he
promised to stop drinking (silly me, I should have know better).
The second time I told him that I was NEVER coming back and
he could drink himself to death for all I cared. This all occurred
over a two year period 1994-1996 and involved me in packing
up and moving out of our marital home into a flat twice, taking
our son with me, who was 15 when it all started. Well, the
second time, my husband did stop drinking. I would not go
back to him though, because I had been burnt before. After he
had been nearly a year and a half off drink, I finally agreed to
try again, but only if we sold the house and bought something
new - a new start. We started living together again in September
1996. It was not easy at first - there were many wounds to
heal, more especially for me, not so much for my husband as
he could not remember a lot of it. Anyway, we settled down
and he stayed sober and then in February 1998 I was diagnosed
with breast cancer (I wonder why!). I was worried that the
diagnosis would start my husband drinking again, but it did
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not and he has been very supportive and right there for me.
However, as you will probably have worked out, I have always
been the strong one in the relationship, and I think he finds it
very hard to deal with the fact that I am now vulnerable and
need comfort and sometimes am afraid. He is still there though,
hanging in, doing his best. What I think I am working up to is
that marriage is worth working at. When you think what you
have been through in the past four years, the death of your
father, breast cancer, marriage, two children born rapidly, it is
a wonder you and your husband are still sane! What pressure
and stress you have survived. To have come this far is an
achievement on its own. I do not believe in staying in an
unhappy situation, but the end of a marriage is terribly, terribly
sad, and bringing up two young children on your own would
not be easy. I do hope that you and your husband can work
your way through this. I never thought my husband and I would
find good times again, but we have. All the very best.
Paula from Sydney
DANCING TO MY WEDDING SONG....2 YEARS
AFTER DIAGNOSIS
Hi Everyone, Tonight I experienced a special feeling, I danced
with my husband to our wedding song. It has been 2 years since
my diagnosis. Stage III cancer, at age 34. How happy I was as we
moved through the crowd of over 700 people, all there to celebrate
our upcoming St.Patricks day Parade. some of them knew what I
had been though, most did not. Not even the man in my arms knew
how happy I was to be dancing on that dance floor tonight, thankful
that God had granted me the health to celebrate another happy
birthday and anniversary with my husband. I sit here tonight, filled
with an actual feeling total joy and celebration of life. This year
has been a painful one, I have lost some of the most wonderful and
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kind people that I may ever know. As a result I feel the need to
celebrate the days and friends I have... Love and prayers to all,
Maureen in Conn.
Dear Maureen, What a wonderful feeling to hold your husband
and dance to your wedding song. I’m so very pleased for you.
Thanks for the reminder that we all have so much to be thankful
for! Love,
Sue from Denver
Dear Maureen, I will dance with my husband in your honor.
Next month is 1 year out of treatment for me and also my 36th
birthday. I’m hoping I will feel like celebrating. Still working
on capturing the grateful feeling.
Sue from Florida
RECURRENCE
My Sad Confession, and My Thanks to Those of You
Who Allow Us to Be Where We Are
My friends,
It happened again this morning.
The first time was last week in the chemo room. A healthy-looking
woman with long blonde hair stopped by to say hello to the nurses,
and since none were there that she knew, she zeroed in on me—a
woman getting chemo, and she tried to tell me how worth it chemo
was, and I assured her I thought so, too, and she told me I would be
like her, soon, with long hair and a radiant future, and I SHOULD
have smiled and nodded and thanked her, but I said, no, actually, I
would be on one chemo or another until nothing worked anymore,
and she looked horrified, and then she smiled and said, “Oh, you
don’t know that, something will work, you’ll see.” And she got out
of there as fast as she could. And I felt terribly sorry that I’d said that.
65
And then this morning I was hauling myself up and down the hills
near my home before work, and a woman picking up her newspaper
addressed me, asking me if I was in chemo (my bandana gave me
away). I said yes and she told me she was a two-year survivor, and
she was a nice woman, radiant, really, with health, and she’d beaten
terrific odds (ovarian cancer), and I congratulated her. She told me
she did jazzercise, and the way she said it, I knew she was
encouraging me to do likewise. I just smiled and said that was
terrific. She tried to urge me onwards with my chemo, and I assured
her I knew the ropes-that this was my 5th chemo protocol, and she
nodded, approvingly, and then she told me that there were things I
should do when the chemo was over, and I interrupted her (cruelly,
I see now) with, “Oh, it will never be over. I’ll always be on chemo
of one kind or another until nothing works anymore.” She muttered
something about fighting the good fight and retreated up her
driveway, and I felt terribly sorry that I’d said that. Again.
I don’t believe I mean to be cruel. I believe I honestly feel very
glad when I hear of a triumph. I think, though, I always feel a need
to say, “But it isn’t simply a matter of doing the hard thing and then
being a winner. Sometimes you can do the hard thing, and then
another hard thing, and then still another until you die. Be glad of
your triumph, for it IS a triumph, and I am glad for you, too. But it
isn’t a team sport, finally, it’s an individual journey, and don’t show
me a map leading to your happy destination and tell me it is mine if
only I do what you did.”
So this post is by way of sad confession, and it is to thank you, too.
Somehow, those of you here in earlier stages of the disease, you
don’t do that. You don’t say, “Be like me and all will be well.” You
know it is an individual journey. You know there are all kinds of
roadblocks and detours along the way. You cheer the victories and
regret the setbacks and grieve the defeats.
I can’t tell you how grateful I am for that. For the witnessing and
the allowing and the hope and the love.
Deborah
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Dear Deborah Don’t feel you have to make a sad confession.
It’s how things are for you - the lucky ones in this dreadful
lottery get a break after one chemo. Sadly, many of you don’t.
Reigan is on 4th chemo just 16 months after initial diagnosis and if positive attitude were everything, she’d have beaten the
beast.
A well-meaning young woman at work sent me a deep and
meaningful email telling me that my daughter needn’t have
had disfiguring surgery and toxic drugs - she just needed to
simply read the book “Your life is your hands” and give up
dairy products!!!
We all wish!
Much love and the best of luck with #5.
Trisha
Dear Deborah: Its unfortunate that a lot of people just don’t
get “it”. Fighting cancer is a daily battle; even for those in
remission. I think people make those kind of feel good, it will
be over soon statements as their way of ignoring the
omnipresence of a cancer diagnosis. I was asked last month to
pose with other breast cancer survivors for a breast cancer
promo for our local paper. I declined and when I saw the picture
in the paper I saw healthy looking women with full heads of
hair and big smiles on their faces.(no scarves, no frowns - no
oxygen tanks) I realized that this is the picture the public wants
to see and I didn’t want to contribute to that misrepresentation.
Deborah - you are blazing your own trail in your individual
battle with this disease. I pray for your continued resolve and
strength.
love janice l
Dear Deborah, Don’t feel bad about what you said and no you
are not being cruel. Your reality is that you are on protocol for
now and perhaps forever - there is no one shot deal like there
was for me (and even then I have come to understand that that
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does not mean that I will be kept safe from this disease forever,
in fact chances are this disease will revisit my life again) and
sometimes you need to let that out, and sometimes others, like
myself need to hear this too.
It is a reminder that we need to be gentle where we tread
because we do not know the whole story. I once told myself
that I would never regret or feel badly for anything that I did,
or said on my cancer journey because no matter what, I was
just doing the best I could with that day, and every day. Please
don’t feel badly about this, take care,
Kate
HOW TO DETECT CHEST WALL
RECURRENCE AFTER MASTECTOMY?
I am curious. How can chest wall recurrence be detected after
mastectomy? My doctor said it can be detected by physical
examination. Does this mean that I can feel a lump? Are there
other methods, such as CT scan? When I was diagnosed with BC,
I had chest X-ray, bone scan, but I do not recall any test to check
the chest wall. So, I am not even sure whether the cancer has
spread to the chest wall. I am concerned because the pathology
report reviewed a very close mastectomy margin.
Gay*
Hi, Gay.. I was just diagnosed with a chest wall recurrence on
March 10 of this year in my scar after I had a mastectomy 5
years ago. I did a physical examination like your doctor said
to do faithfully every night for the 5 years previous to my
recurrence. I just knew that what I felt was not right. I did not
really feel a lump. I felt a thickening in my scar. I was really
sure what I was feeling, but I knew I had to get to mysurgeon
as soon as possible. He did a biopsy and it was a local
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recurrence in my chest wall. If you have any further questions,
please post another message to me. I hope this has helped to
answer your question.
Pauline
Gay – My sister-in-law had a mastectomy and told me that
they x-ray that side every year when they do her mammogram
on the other side. They also do an annual chest x-ray. Writing
this, it sounds like a lot of radiation!
mg
GOOD NEWS! (Tumor Markers Down)
I am so happy, I don’t know whether to laugh or cry! As most of
you know, I was diagnosed with a recurrence in one spot close to
the sacrum in February. My life hasn’t been the same since, full of
pain and doctors appointments. I held my breath and called for the
results of my tumor marker test today. They had been coming down,
but I have had quite a bit of pain in my hip lately. Well, my tumor
marker (27.29( was 25. Do you BELIEVE it? 25!!! Yippeee! Thank
you, God!!! Thank you Friends!!! Thanks to everyone who prayed
for me. This means I am in remission. 0-35 is normal and some
even squeeze it to about 37 or 38. But I am 25!!!!My first normal
test this year. The Aredia and Arimidex must be working and the
pain I feel is healing pain from the spot. I just had to share my
news with all of you. I have been so worried lately (crying). Just
returned from my cousins funeral. I cried more than anyone else
there because I felt I would be next. I didn’t want to share my
fears here on the forum. I only want to uplift. I have been really
down and this is a huge pick-me-up. I’m just so thankful for more
time at living life...I’ll stop now.
Glenna
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Congratulations, Glenna. I always think of you as the peacemaker in the forum. Thank God you now have some peace,
too!!!
mg
Glenna – There is power in prayer!!! I am a firm believer. I
am so very happy for you. I have been trying to contact you
via ICQ but I guess I just don’t know how. I’ll keep trying. I,
too, had good news today. My blood work from my onc. came
back A-Okay or very normal.My internist is going to treat me
for fibromyalgia. My achy legs and joints. He says it is
brought on by stress but will not rule out that Tamoxifen could
have an effect also. I told him how many on Tomoxifen had
complained with achy joints. He also took me off of another
drug I have been on for quite some time for fluid build-up. He
said that sometimes causes the pain I have described. He
wants me to stay on the drug he gave me – taking it at bedtime
until November when I go back to see him. He also checked
my potassium. That hurt!!! I have very fragile, tiny veins that
also collapse and roll. All in all, I hope to start an exercise
program and make an all out effort to lose some of this weight.
He said that would help also. Let me hear from you and
again, I am so thankful for your Good News!!!
Ollie
FOLLOW-UP FOR FLAT-CHESTED WOMEN?
Jan is coming up on a one year anniversary of bilateral
mastectomy in a couple of months. Mammography doesn’t seem
like a reasonable follow-up technique, since there is nothing to
put in the vise. Can anyone similarly situated tell us what is
done to check for recurrence?
Sandy
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I have had both of my breasts removed. Both of my doctors
said I was to have an ultrasound. Just like when you have a
baby, they check to see what is going on. With the chest wall
and under the arm, that “stuff in a tube” is cold! It only takes
about ten minutes and you (your wife) can watch the scan while
the tech is doing it. I have been getting one every year for 9
years. Good thought to the both of you.
Julie
Sandy – I had bilateral mastectomies also. Like Rorie’s docs,
mine do no more than order a chest x-ray and do a “chest”
exam every few months. I do get some labs (CBC and chemistry)
as well. No tumor markers, ultrasound, scans, etc. It seems
this philosophy is based on the belief that there’s no benefit
(quality or quantity of life) to a woman in knowing she has a
recurrence before she’s symptomatic. The variety of
management approaches only serves to accentuate our ongoing
search for answers we simply don’t have yet. I hope all goes
well at Jan’s follow-up and that you both get a dose of
reassurance to boost you forward another step on this rocky
trail.
Orina
NEED ADVICE (On Biopsy Types)
Hi, everyone. I really need some information and advice from you
all. Yesterday, I went to see my surgeon for my biannual check-up.
I have just gone from seeing her four times a year to twice a year.
So, of course, I am so used to just breezing in and being reassured
that I fully expected yesterdays visit to be the same. After all, it
has been four years now since I finished treatment and have had no
real problems since. (For which I thank God every day!) Well,
yesterday she found a lump in my left breast (actually my only
breast). I was really shocked as I have been doing BSE since I was
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21, so after 17 years, I consider myself pretty good at it – after all,
I found the lump that turned out to be malignant. Anyway, she did
a needle biopsy right then and there. Results will be back next
week. The thing is I was reading on this site about people have
needle biopsies that came back negative when indeed the tumor
was malignant. I will be going for a mammogram in October. I
guess my question is, should I trust these tests or insist on an
incisional biopsy (which I really don’t want) regardless of the
results?
Kathleen
Kathleen – I’m so sorry you are being faced with choices like
this all over again! I guess I’m really suspicious of any lump
that isn’t clearly a fluid-filled cyst by both ultrasound and
needle aspiration. I had four mammograms and ultrasounds
over 11 months (because of breast thickening and discharge)
that were all normal. Finally the mass got so big my breast
surgeon did a needle aspiration; it was also negative, but we
went ahead with the open biopsy which reveals a “7cm tumor”
with positive lymph nodes. If we had done the incisional biopsy
sooner, could we have caught the cancer before it was a Stage
III? We’ll never know. But I lost faith in the usual diagnostics
at that point. She kept telling me the changes were probably
just fibrocystic. In my heart I felt that something wasn’t right –
especially since I’d never had fibrocystic breast changes and
because the thickening, discharge, and enlarged node were all
on one side only. Maybe the best approach to this is to follow
your intuitive lead. Are you nervous about this lump? Is the
evidence that it’s benign strong enough to convince you? If
you have any doubt, it might give you a huge sense of relief to
have a surgical biopsy. Good luck with a very difficult decision.
Orina
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Kathleen - mine was lobular AND infiltrating ductal. Me – I
would go for the incisional. Let me know what day you are
going to be in metro and we’ll make arrangements to meet. Do you
come to the Dickson Centre? I’m waiting for mammo report now
from Monday. Hate this waiting and feeling so alone. Thank
heaven for this forum. At least we can wait “together”. My prayers
are with you.
LUMP IN COLLARBONE
I saw my oncologist on Wed., and she discovered a lump in my
collarbone. I now have an appointment to see the surgeon on Mon.,
and he will probably be doing a biopsy. The oncologist told me
not to worry – easy for her to say! She says it could be a result of
the mastectomy and radiation, but I know it can also be a sign that
the cancer is spreading. I have also had sore hips so will be having
a bone scan, but it is not booked until Oct. 29th. I also started
taking Tamoxifen on Wed. I’m wondering if anyone else had a
lump in their collarbone. Until Monday, I will try not to worry.
On a different subject – My 18 year old son left for Australia this
week. He and a friend have gone to tour around there and pick up
work as they travel. I knew it would be hard to see him leave but
I had no idea it would be as upsetting as it was. I know that he
arrived there safely, so now am feeling a little better.
Dianna
Oh, Dianna, do I ever feel for you. Seeing your child leave is
always heartbreaking, been through it several times. He will
have a wonderful adventure, I am sure! I developed a “lump”
on my chest after radiation that was a cancer (caused by the
radiation), but it was squamous cell carcinoma, which is very
slow growing and was completely removed. Not at all the
kind that my breast tumor was. It took about two minutes in
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the doctors office and it was done. I am so sorry that you have
to wait until Monday. Why do these things always happen this
way to torture us? You’ll have many prayers and good thoughts
your way, to be sure. And, let us know what happens.
Nancy
I finished radiation in mid May this year. About two months
ago I noticed a lump in my chest about the irradiated breast
which was quite sore. I thought it was a rib and went to the
GP who ordered an x-ray. It came back clear. When I went to
my surgeon for my six month check-up he said it was the
cartilage that joined the rib to the breastbone (the
costrochondral cartilage) and that
it was quite swollen
and needed further investigation. I had a CATscan (the waiting
was hard!!!!) But that came back clear, too. My surgeon said
it was probably an inflammatory reaction that had
been triggered by the radiation and to try not to worry about
it. I do try but it is still there and quit sore and I have to really
discipline myself not to keep prodding it! So, it seems that
various lumps and bumps can occur in an irradiated area
without necessarily being cancer – even though we always
think the worst ourselves! I will be thinking of you. All the
best with the tests.
Paula from Sydney
THANK YOU FROM JUDY
I want to thank you from me and my sister Judy and all of my
family for praying for her. The doctors stopped her chemo last
week. We had to bring her to the hospital yesterday because she is
very sick and there is nothing they can do. We took her back home
because they told us she will only live a couple of weeks. Her
cancer has spread everywhere in her body. Our family is devastated.
We cry non-stop. I thought I would be stronger than this but I guess
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I’m not. As I write this letter my tears just keep coming. Losing
Judy will be like losing part of my heart. My mother is beyond
devastated because in the back of our minds we thought maybe
there is a chance of her getting better. I tell Judy how nice all you
people are and what troubles you have also. And she prays for you
all. I want to thank you all for the prayers and may God keep you
all well.
Maureen J.
My heart goes out to you and your family. I wish I could be
with you to give you a hug. I know exactly what you are feeling
as I lost my sister to Hodgkin’s Disease five years ago and I
can tell you with all certainty that a part of our hearts dies,
too. I only hope that you will continue to find the strength
withinyourself and your family to find something to hold on to,
and that Judy’s cancer will serve as a reminder to us all that
life is so precious. Judy must be one courageous woman. I wish
I could know her. By the way, you just keep on crying. It’s O.K.
Mo
Maureen, We all share your pain and tears, no words can mend
the feelings that your family is having at this time.I lost my
mother 10 years ago. She was very young and we did not think
her time was near over, however, we were wrong. Many tears
and sad days have passed since then but I am free to talk about
her and the wonderful woman she was. She taught us many
lessons about life in the last few weeks of her life. There is not
a day that goes by that I do not think of her. Her memory will
always touch me when I need it most. I pray that God will bless
Judy and your family with the closeness and love that is needed
in these days ahead. Share your love with Judy. Remind her of
a special time that you had with her. You are a wonderful sister.
You have cared for her and loved her through the tough times.
Bless your family.
Maureen in Conn.
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Regional Online Breast Cancer Resources:
Breast Cancer Action Nova Scotia (BCANS)
http://bcans.ca
Online support, discussion and information for those affected by breast
cancer.
Atlantic Breast Cancer Net (ABCN)
http://www.abcn.ca
Canadian Breast Cancer Foundation (CBCF) – Atlantic Chapter
http://www.cbcf.org/atlantic
The Purple Lupin Project
http://www.infonet.st-johns.nf.ca/bcinfo/
The Pinkrose Project
http://www.pinkrose.ca
Prince Edward Island
Please see http://www.abcn.ca for the latest links and resources.
The New Brunswick Breast Cancer Network
http://www.brunnet.net/cancer/index.htm
Other Links of interest:
Canadian Health Network
http://www.canadian-health-network.ca
Canadian Breast Cancer Network
http://www.cbcn.ca/
Willow Breast Cancer Support & Resource Services
http://www.willow.org/
Canadian Cancer Society
http://www.cancer.ca
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Barbara Thompson Wilson
Impressionist Artist
Barbara Thompson Wilson’s paintings are held in public and private
collections in Canada, the United States, England and Europe. She is
active as a teacher and is currently president of the Contemporary Art
Society of Nova Scotia. Wilson’s impressionistic paintings bring to
life the sea and landscapes of Nova Scotia and the Old World grandeur
of Europe.
The painting “Cosmos” was designed by Breast Cancer Action Nova
Scotia. The title “Cosmos” was chosen to symbolically stand for
“Cancers of our sisters, majestic our survivors.” Its choice of colours
represent all that the BCANS online support forum represents. The lines
of red represent love and caring that reach around the globe, extending
to the skies and beyond. The prevalent blue represents hope and the
intermingling of gold signifies light and warmth. The women represent
all women, regardless of colour, age or social status.
Original Cover Design (Angel)
Courtney Wagner, presently in her senior year at Washington College,
drew this angel at the request of her mother, Lynne Wagner, a longtime participant of BCANS, who was first diagnosed with breast cancer
in 1994. At the time the cover was drawn Courtney was 18. It was
unanimously agreed by the women of BCANS that an angel, a symbol
of love and protection, should be on the original cover.
Post Office Box 34091
Scotia Square RPO
Halifax, NS B3J 3S1
Tel: (902) 465-2685
Fax: (902) 484-6436
http://bca.ns.ca
email: [email protected]
Charitable Registration No. 89080 6193 RR0001
Originally published in 1999, Breast Cancer Online: In Our Own Words was
developed by participants from the BCANS online support group
(www.bcans.org). The group wanted to share with others who might not be aware
of BCANS. The book was such a hit that a reprint was ordered and a follow-up
book, Breast Cancer Online: How We Told Our Children, In Our Own Words
Part II was produced. It is our hope that these are only the first in a series of
books aimed at providing information and support from women to women, who
have “been there”.
Also available online at www.bcans.org
This project has been made possible with funding from:
Canadian
Breast Cancer
Foundation
Atlantic Chapter
In the Pink Fun and Fashion Show
New Woman Prosthetics & Apparel