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Aimee
I woke up one morning in late March 2003, and my husband and I both
immediately noticed that the aureole on my right breast appeared
swollen. I didn't think much of it because we had been intimate the
night before - and so I thought this was an unconscience consequence
and would go away eventually.
I watched it over the following week,
and rather than get better, it seemed to be getting worse. My aureole
became so thick and inflamed that it became flush with my nipple. And
the color had turned to a putrid yellowish tint. My breast became
enlarged and much firmer than usual. I also developed a redness that
was about the size of 3 quarters, and it was directly adjacent to my
aureole. The redness appeared more like an increase in capillaries
rather than a sunburn. Within two weeks I began to notice the
"dimpling" or peau de orange around my aureole.
Looking back I remembered that my axillary lymph node (under my arm)
had become swollen and tender several times over the last 6 months.
But it would always subside, so I didn't think much of it, and vaguely
connected it to my menstrual cycle.
So in April, a month after my initial symptoms, I had a routine
gynecological appointment for a PAP. I knew I could not proceed with
the exam because I was menstruating, but I kept the appointment so
that I could have my breast examined. I was seen by a Nurse
Practitioner, who before even examining me had given me the lecture
about the changes a woman's breast can have during the menstrual
cycle. Then after examining me she rushed out of the room stating that
she had to get the doctor. I think the blood rushed out of my face at
that moment - the first moment when I realized that something was
really wrong.
The gynecologist came in and gave me a very thorough
examination. His conclusion was that he was not sure, but that "some
breast diseases present this way". He requested an ultrasound of my
breast, because being only 30 years old meant I would not be approved
for a mammogram with my HMO - especially because I had no palpable
mass in my breast.
So I scheduled my ultrasound and flew home to research the "breast
diseases" he was referring to. I was completely shocked to discover
through an internet search that I had all the symptoms of Inflammatory
Breast Cancer. I was a regular self-examiner, and the idea that I
could have breast cancer and not have a lump was completely new to me.
After researching I was convinced that this is what I had - IBC.
I went through the ultrasound, where two enlarged axillary lymph nodes
were detected. One was 5cm in size. The technician insisted on a
mammo, and so I had that, too. The only thing observed was "increased
density" in my affected breast and "thickening of the skin".
Ironically about 2 weeks after my diagnosis I received a form letter
stating that my mammogram was "normal", and I had no radiological
evidence of disease.
Off to the surgeon I went. I was told that increased breast density is
normal for young women and that the thickening of the skin could be
evidence of mastitis - a common infection of the milk ducts in the
breast. Having researched already, I knew this is probably what I
would be told, and that I didn't have mastitis. When I breastfed my
first son 14 years earlier I had mastitis. And that is like a UTI -
once you've had one you NEVER forget the symptoms.
I had no fever, no
pain and tenderness (besides my lymph nodes), no discharge from my
nipple.......I just knew it wasn't a breast infection. But, being that
I was 30 years old with no history of breast cancer in my family, the
doctor insisted that I was not at risk for breast cancer and that I
most likely had mastitis. So I humored him with a 10 day course of
heavy antibiotics. After 5 days I not only observed no decrease in the
symptoms, they seemed to be getting worse. So I demanded an
appointment immediately, and the doctor agreed that surely after 3
days of antibiotics we should start to see a response and not a
worsening of symptoms. So he scheduled a biopsy.
I went in for an incisional biopsy in late May - two months after my
first breast symptoms appeared. The surgeon removed a crescent shaped
area of my aureole from the area that appeared to exhibit the symptoms
the most. This first biopsy showed a high grade ductal carcinoma in
situ (DCIS). I was referred to an oncologist. Both he and the surgeon
agreed that because these pre-cancerous cells were high grade, a
simple mastectomy was the best course of treatment.
I was told by the
oncologist that my symptoms were not severe enough to be IBC - my
breast was not swollen enough or inflamed enough, and that my enlarged
lymph nodes were "unrelated" and "coincidental". It was merely by
luck that they discovered the DCIS, I was told. But in my mind things
weren't correlating, and I was still certain I had IBC. So I demanded
a second opinion.
The second oncologist that I saw insisted that a biopsy of my lymph
nodes had to be done first. So the surgeon conceded and did a simple
needle aspiration of my enlarged node in his office. He was certain
with that small amount of tissue being extracted that cancer would not
be found, but he agreed if not he would proceed with a node
dissection. We never had to go that far because that small amount that
was extracted was riddled with cancer that definitely originated from
the breast. I was officially diagnosed with IBC.
So I was then scheduled for more surgery - deeper core biopsies of my
breast and my lymph nodes so that enough tissue could be collected to
run further pathological tests. I also had a PortACathe put into place
so I could begin chemotherapy. The pathology showed my cancer is not
hormone receptive (ER/PR negative) and is HER-2 positive. This all
confirmed the characteristics of IBC - the most aggressive combination
of factors. Then I was sent off to radiology again to find out the
extent of the cancer. Thank God there was no visible evidence that it
had spread beyond my lymph nodes - I was a Stage IIIb.
So I started an 8 cycle chemotherapy course. Adriamycin/Cytoxan X4 on
21 day cycles and then Taxotere X4 on 21 days cycles. Perhaps surgery
in between cycles. But this protocol did not seem aggressive enough
to me. I was terrified of the disease progressing, and I pushed forth
in locating more options for myself. I consulted with the City of Hope
and considered their tandem high dose chemo/stem cell rescue trial
with IBC patients. I qualified for the trial, and they had "proven"
results treating over 100 women with IBC. But they still only boasted
50% disease-free survival rates at 5 years.
So we decided not to go
through the treatment there for many reasons. But the bottom line
reason was that I felt in my spirit that God was turning me away from
that. So after 3 cycles of A/C my lymph nodes were still the same size.
Surely there should be some type of clinical response after 3 courses
of chemotherapy? We collectively made the decision to skip the 4th
dose and move ahead with the Taxotere. It became evident that surgery
would not be the next step - I still had more chemo to
accomplish.
In the meantime I was growing increasingly concerned that 4 more
treatments of Taxotere was not enough. There would have to be
something more. And because my oncologist initially laid out such a
clear treatment path, I was uncomfortable with his silence and
uncertainty about "plan B". So off to Texas we flew to consult with
another "expert" on IBC who had reported having even better success
with his treatment protocol. And he had a lot of good advice and
insight. That was the best $200 I ever spent on a doctor - he armed me
with some really good ideas to bring back and fight for. And that is
exactly what I did.
So I had 2 treatments of Taxotere and then we changed protocols. The
last two cycles were Cytoxan on day 1, Adriamycin by continuous 72
hours infusion (days 1-3) and Taxol on day 4. This protocol was hard,
and much more aggressive. But I felt more comfortable with it in terms
of tackling this cancer. I got through the first treatment - and was
placed on Neupogen. And then came the second. I had the C on Friday,
got hooked to the A pump and went home. Sunday morning I awoke to the
dramatic signs of a blood clot. I ended up in the hospital for 5 days
with two blood clots in my supraclavicular region and a smaller clot
in my lung. This was in October. I completed 2/3 of my last treatment,
and my PortACathe had to be removed.
It is now early November 2003, and I am scheduled for a bilateral
mastectomy - a modified radical on the affected side and a simple w/
sentinel node biopsy on the opposite side. My lymph node area is still
tender and swollen, and while my symptoms had almost completely
subsided, the swelling of my aureole has returned. My future remains
uncertain, and the road ahead remains long. I will need more treatment
after my surgery, but how much more will be determined by the extent
of the cancer found at the time of surgery. And radiation is a given.
I'm not going to lie - this has been emotionally difficult for me. The
treatments have been physically hard, but I have been blessed with a
strong body that has withstood them. The much harder part has been the
emotional part. But I am a writer....and I have written my way
through it. I would like, when I see an end to my need to keep writing,
to seek publishing of my writings.
There has to be a purpose for all
of this..........for the physical pain, the fear, the loss...for the
worry and sadness of my Mother who watches her only child go through
this.....for the fear and frustration of my husband who has stood
valiantly by my side....for the uncertainty and worry of my three
children who wonder how different their lives would be without
me...especially for my daughter who will worry the rest of her life
that it will strike her, too....for the people at church who wonder
why God does not miraculously heal me...and for my friends who care so
deeply they are speechless.
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