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Sharon
I had put off seeing a doctor for several weeks after finding a
lump. My husband had three terminal relatives in his family, and I
just couldn't deal with anything else at the time.
I knew from the start that this lump was not good. I did see an
internist - telling her I had a breast lump. She didn't even examine
the lump. All she did was lecture me about my cholesterol.
I scheduled a mammogram on my own but needed an MD order because I
had a known lump. I had the mammogran which was highly suspicious.
When the radiologist came out and held my hand, I knew it wasn't
good.
I then had an ultrasound, and it was suggested I see a surgeon. I
had a biopsy on July 8, 2005 and was diagnosed with very aggressive
ductal carcinoma. The surgeon wanted to do a mastectomy.
I had already decided I would return to Seattle Cancer Care
Alliance for another opinion. We had moved to the Tri-Cities area
of Eastern Washington 5 years ago to get away from the traffic,
the people, the TRAFFIC and the rain of Seattle.
I had worked as a home infusion nurse for 4 years in the Seattle
area and found out I knew several RNs who also worked at SCCA.
In August I had a lymph node biopsy which was positive for cancer.
I was ultimately diagnosed with stage IIIa locally advanced ductal
carcinoma. IBC was mentioned but not confirmed. I had a very
large tumor with swelling and thickening of the skin. I had no
other symptoms.
My biopsy site was still draining so chemo was put on hold until
this was healed. My son was also getting married on August 14th, and
I did not want to be on chemo for that. I knew that would be the
last time I would be like myself, and I did not want to give that
up.
The CT and Bone scan where negative so 3 days after the wedding I
was started on Adriamycin/Cytoxan for 12 weeks as neo-adjuvant
chemo. There was no change on the MRI after 9 weeks, and the
breast seemed to be getting larger. I was switched to Taxol.
The breast responded by getting softer, and the edema was less,
but I had what I call neuropathy of my face. It felt like a
thousand needles sticking in my face with every treatment, and the
severity increased.
Taxol was stopped, and I missed one treatment of chemo. During
Thanksgiving week the breast became very red, swollen and painful.
I was started on Abraxane with lymph node progression to my left
neck and increased swelling and redness. This was stopped.
Another oncologist diagnosed me with IBC in December, 2005 and
recommended I start Cisplatin/Navelbine every 3 weeks with
Navelbine weekly for 4 rounds. I just finished that series.
I have been lucky with side effects with all of the chemo. With
this combo I did progressively feel more nauseated with
overwhelming fatigue and overhwelming constipation.
The good news is that the breast shrunk, the redness was
controlled and the tumor was smaller. The lymph nodes in both
sides of my neck were also gone. The PET, CT, and bone scans
showed very few lymph nodes visible, but did show bone mets.
I was just devastated. My surgery for mastectomy was also
cancelled. I received very negative reports from my oncologist,
just the opposite from what I had heard just a week before that.
My son was also very upset and wrote a letter to all concerned
about our feelings about this whole shift in the treatment and
attitude. I had been told that surgery needed to be done for local
control of the IBC. We were way beyond any good prognosis.
I was evaluated by the head oncologist and a new surgeon. The
first told me that so much tissue had to be resected to try to get
clean margins that I would need a skin graft. He was not positive
about the surgery, and I got the distinct impression he really
did not want to do it.
I had an evaluation on March 21, 2006. Both doctors were very
positive about doing the mastectomy ASAP and stated that I would
not need a skin graft. The surgeon also felt that all of the
swelling and redness might not all be IBC after all because it
will go away or at least lessen every time I apply heat.
He stated that cancer will not be affected by heat. They also
stated that my bone metastasis was stopped very early after it
made its appearance and is in remission.
I will be having a mastectomy on March 21st, next Monday and then
radiation. I know my length of life will not be as long as I had
hoped for, but I now have some hope again, and I feel this
surgeon has my best interest in mind and is listening to me.
I am angry that I have this disease. I have the WHY ME Syndrome.
I have had multiple surgeries, a birth defect and many deaths in
my immediate family.
Out of 4 siblings I am the only one alive. The others died in
childhood. My Mother died at 62 of colon cancer. I am almost 60.
I am very angry that after being a working RN and dealing with
many cancer patients over the last 39 years, I did not know about
IBC or how aggressive breast cancer can be. Why is this
happening? Women need to know about these things.
Why isn't there more information given at the time of mammograms?
I feel having a mammogram gives the woman a false sense of
security. I know I had it. None of my co-workers knew about IBC.
Nurses on the Oncology unit at the UWMC in Seattle did not know
about it, but they do now.
I am not ready to throw in the towel yet. I will keep fighting,
but I will not do it forever. I hope I can deal with the end of
my life with grace and dignity, but until then, I will go on
kicking and screaming and telling everyone who will listen about
IBC and aggressive breast cancer!
Sharon in Tri-Cities, WA
badgercanyon@hotmail.com
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