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Karen
In 1997 my 36-year-old daughter had a large lump (10 cm)
in her breast that had appeared suddenly. Karen was originally diagnosed with
invasive ductal adenocarcinoma.
The doctors moved as quickly as we had hoped
-- scheduling appointments for the oncologist, general surgeon and plastic
surgeon for reconstruction.
A few days before the scheduled surgery date Karen had complained
about one breast being warm to the touch and some 'wrinkling.'
The oncologist gave her an antibiotic, and after three days she was
re-diagnosed with Inflammatory Breast Cancer ... accelerating, aggressive breast
cancer metastasizing to the lymphatic system!
Surgery was immediately cancelled. The protocol for IBC is different
than standard breast cancer. Because this is such a fast moving
form of breast cancer, chemotherapy is done before surgery.
It's really important to make sure that the 'margins' are clean so that
the cancer cells are not allowed to spread into the blood and lymph
systems when surgery is performed.
What was so ironic is that if
her doctor had moved more quickly, surgery could have been disastrous!
Karen, compassionate and sensitive, was overcome with a strength
I had never previously witnessed.
After chemo, her sense of humor was in full
play. Calling herself the 'Chia Pet' after losing her beautiful
shoulder length hair and slipping two stickers on her breasts under
the hospital gown the day of her simple mastectomy -- one saying
'This one' with a smiley face and the other saying 'Don't Touch'
on the healthy breast -- She was my strength.
During three weeks of isolation, when she had her high dose chemo
and stem cell rescue, she continuously cheered up seriously ill
people on the transplant floor with her upbeat attitude and sweetness.
Radiation, another protocol, and now on Tamoxifen, have failed to
dampen her spirits. Fortunately, she is doing amazingly well.
There was nothing positive about what she was being told -- a 25% chance
of survival over a five-year period of time.
We have since learned
NOT to pay attention to statistics and know with all our hearts she
does have a future!!!
The main problem with IBC is that, unfortunately, there are too
many physicians who are really not aware of IBC's symptoms and who
think IBC is so rare, they are misdiagnosing patients -- wasting
precious time with people's lives.
Because of my daughter's diagnosis,
the wonderful community of the IBC support group and the IBC Research
Foundation, I have become a full time IBC activist.
Spreading the word about symptoms is urgently needed for public awareness and an
accurate diagnosis.
You don't have to have a lump to have breast cancer! It sounds contradictory
because my daughter did have a 10 cm tumor, BUT the majority of ibc
patients do not have a well defined tumor, so mammograms and ultrasounds
do not usually detect inflammatory -- therefore the urgency of public
awareness of IBC symptoms!
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