Hi Susan,
I know this is a late response to your e-mail, but I wanted
to let you know
that I am one of those who is not likely going to have
surgery. I have
Stage IV IBC, diagnosed in April of this year. My blurb
below describes the
treatment I've had so far, but because I have metastases to
my liver, spleen
and bones, the consensus is that surgery wouldn't help and
may increase the
chance that a future recurrence would appear in the liver,
instead of the
breast---the liver being something more significant than the
breast for
longevity!!! If they told me (or tell me in the future) that
the breast, or
both breasts, would be better off gone, they'd certainly be
gone!
I've found that we are in the fortunate time of intense
research on IBC and
advanced forms of other breast cancers, so that many
treatment advances are
being made. While this is confusing, it also provides a lot
of options.
The number of people who have done well on "older"
types of treatments also
shows that response is a very individual process and very
hard to predict.
Anyway, I also want to share my good news: my latest CA
15-3 tumour markers
(from December 28, 2006) were ***70.4***. While that's
still a bit over
twice the normal level of 30, it's fantastic news for me.
(My peak was
**1240**!!!!!)
So, while I'm not NED yet, and may never be, with spots
shrinking in my
liver, staying steady in my spleen but lighting my bone
scan, I can honestly
say that there is HOPE for me yet.
Strangely enough, even with my medical training, I really
don't care if I'm
ever NED or officially "cured". My long-term goal
is to do the best I can to
make it to 84 years old!!!! While there may not be medical
evidence that a
positive attitude makes a difference, I personally feel that
it's because
the studies haven't found a way to measure it accurately yet
and that, for
me anyway, it has made a huge difference. Before I went to
medical school,
I got advice from someone whose parents had a bad experience
with their
family doctor: never take away someone's hope. It doesn't
mean give false
hope, but I believed it to be profoundly important then and
I have found it
to be profoundly helpful since.
Take care,
Debbie
My IBC "blurb": Previously, family physician, most
recently working at the
Centre for Emotions and Health in Halifax, N.S. First
symptoms (heavy, red,
swollen breast with Peau d'Orange) mid-March 2006; diagnosed
with stage 4
IBC by April 24, 2006, with mets to spleen and bone and
extensive, "too
numerous to count on CT scan" liver mets.
First chemo April 28/06 FEC 100 (epirubicin only 50% for
first 3 doses
because of severely reduced liver functions).
Married July 28, 2006 to a wonderful man. Finished 6
sessions of chemo in
August/06 with 2 full doses of Epirubicin. Also on
Pamidronate (IV every 3
or 4 weeks) to ward off bone mets and osteoporosis. Had
medical menopause
induced by Zoladex (aka Goserelin, which I get
subcutaneously every 12
weeks) in August after chemotherapy (it was decided this
would be easier
than surgical removal of my ovaries).
Since then, I've been taking daily Aromasin (aka
exemestane), an aromatase
inhibitor. CT scan July 11/06 showed some regression of
liver tumours, but
splenic tumours seemed larger (?!). My liver had shrunk
back to almost
normal size (it was spread across my abdomen almost to my
spleen).
Went on wonderful honeymoon cruise in Sept/06--amazing!!!
Overall improvement to date.
CT scan Dec 1, 2006: continued reduction in size of liver
mets, but bone
mets more obvious (most likely because the CT scan
"caught up with" the May
2006 bone scan results). Bone scan Dec 5, 2006 shows no
change, except one
spot on my lower spine is no longer "lighting up".
I'm lucky/blessed to have had good side effect meds, good
energy, great
appetite, very strong support from my husband, family and
friends and a
great team of nurses and doctors looking after me!
Carpe Diem (="seize the day")
----- Original Message -----
From: <SusanRNLAC aol.com>
To: <ibcibcsupport.org>
Sent: Monday, December 11, 2006 9:41 PM
Subject: [ibc] Introduction
> To IBC support members,
>
> I just subscribed to this website yesterday.Have not
received any e-mails
> yet from this site.
> I had written a letter to ibc research and am thinking
that the same
> people
> subscribe to both.
>
> I was dx: 10-03 with stage 3b ibc in left breast and 3
axillary
> lymphnodes.
> My original treatment plan was to have 4-6 months of
chemotherapy
> followed
> by bilateral mastectomies, radiation and more chemo.
>
> After 4 months of chemotherapy my breast visually
regressed, there were 3
> hypermetabolic lymphnodes and tumor marker was 199.
The oncologist said
> to
> have surgery right away and no more chemo because
"no chemo will work". I
> changed oncologists. She put me on herceptin which
helped while I was
> awaiting
> surgery. Then I had progression on the herceptin and
the surgery was not
> even
> authorized yet.
>
> In September 2004 I was given arimidex and took that
until 11-06. On
> arimidex alone, I achieved clinical (breast looks and
feels normal) and
> pathological (tumor markers 26-30) remission. In
October the breast
> started to burn and
> the MRI showed one lymph node, some small areas of
uptake indicative of
> recurrent tumor. I changed to aromasin and the tumor
marker went down in
> 2 days
> and the burning stopped.
>
> I was wondering if there is anybody that did not have
surgery because of
> chemo resistance or other reasons? Has anybody been
treated with
> radiation and
> not surgery? Has anybody had herceptin and it ceased
to work? Does
> herceptin work after a long break? Has anybody
achieved good results
> from arimidex
> or armoasin or faslodex? What about the new her2nu
drug? What about
> avastin?
>
> Thank you very much. Your input will be very much
appreciated.
>
> Sincerely,
>
> Susan Anne in Ventura, California
>
> [list software deleted text/html attachment]
>
>
>
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