In
my case, my story will begin with how my cancer was NOT diagnosed. I
was never one to go to doctors for little things, but in the fall of
1996, I began running a low grade fever, complete loss of appetite,
general malaise and pelvic pain that persisted for seven months.
I
went to my internist, who despite running a wide range of tests,
wasunable to identify the reason, all tests were coming back
relatively normal with only slight elevations in WBC and a few others.
I had numerous colonoscopies and gastric tests, all coming back
normal. My internist early on seemed to have decided that what ever
was going on was psychological...yes, I was anxious and depressed,
but, when one cant eat, has pain, feels sick and is being put thru
test after test with long delays between each one, I don't think this
is out of the ordinary.
After
a few months, this internist was going on sabbatical and she
essentially fired me as a patient, saying "Your fine, I see no
reason for you not to try to get pregnant, and I think its best if you
don't see another doctor in this practice while Im gone." I
responded angrily, "I am not fine and I really don't think
getting pregnant would be the best idea when I can barely eat and have
pelvic pain."
The GI doing all the procedures and tests never seemed to doubt me,
and said things like-- "They told us in medical school, you NEVER
want to be a difficult-to-diagnose-patient," "Something is definitely
wrong, probably something autoimmune that is taking a while to show it
self clearly." In an attempt to alleviate the pain based on a
hypothesis that something autoimmune was going on, he put me on a
short course of steroids.
I'd lost a total of 35 pounds, looked like a concentration camp
victim. Although my doctors couldn't diagnose me, the mailman at my
office was spreading rumors that I had cancer because of the massive
weight loss.
I went to another internist, but the chart implying that I was nuts
followed. This internist pulled me off the steroids as I was running a
fever around 100 degrees. More tests including exploratory surgery.
However, a day or two after the steroids were stopped, my pain stopped
and gradually my appetite returned. (note: the steroids I was on are
included in lymphoma treatments--that's why the symptoms stopped)
All throughout this entire episode, a groin node, where the leg meets
the body was slightly enlarged- a little over 2 cm. The internists
were aware of this but said it was nothing. It seemed to be growing
and several months after the pain had stopped and my appetite had
returned, I asked the internist to biopsy it. He insisted it was
nothing and I had the feeling he thought I was nuts. I persisted and
got the biopsy. It came back benign. I felt absolutely fine for two
years.
In terms of public opinion, every last doc I saw thru this ordeal was
on the published lists of "best docs" in the city. Do I take
these lists seriously anymore-- NO.
Then a 4cm node popped up on the other leg. This time the Drs were
worried, did the biopsy pretty fast. First impression was lymphocyte
predominant Hodgkins. The pathologist had compared it with the earlier
tissue and told me that an error had been made-- both biopsies looked
the same. He was not 100% sure of his diagnosis and sent it to other
experts to review-- came back as an aggressive NHL lymphoma difficult
to classify or grade, either an unusual marginal zone or unusual bcl-2
cd10 neg follicular that looks like its been caught in the act of
converting from indolent to aggressive lymphoma.
The
third group of docs at the NCI cancer ctr where I was treated decided
it was a follicular grade 3 lymphoma with diffuse areas. No other
tumors were seen on CT or PET. I was put at stage 2 because the tumor
that had been misdiagnosed was on the other leg. From what I heard
from one of the docs, the tumor board was pretty outraged at the
earlier
misdiagnosis- the cancer had been obvious- the one doc was annoyed as
he felt they charted it so as to protect the first pathologist rather
than put was actually said in the meeting about how blatant the error
was.
The mailman was right, the doctors were wrong. I was not totally
crazy, I had cancer. Although I was VERY angry and scared about what
the misdiagnosis would mean in terms of my eventual outcome I did not
sue for malpractice.
I had 3 rounds of CHOP, pelvic radiation and then rituxan. I had been
trying to convince my doc to give me R-CHOP as Id read about it, and
he initially refused saying it wasnt proven. Then he and my rad onc
went to ASH 99 saw the abstracts and my rad onc suggested I should
also have rituxan-- I told him, he needed to talk to my onc about it,
as Id already asked. After they discussed it, my onc agreed to give me
a course of 4 rituxan after the radiation.
So far, its been close to 6 years, and, thankfully, I have stayed in
remission.
My advice from my experience-- ALWAYS GET SECOND OPINIONS ON BIOPSIES.
Dont stay with doctors who get frustrated because they cant make a
diagnosis and then treat you like a hypochondriac when your body is
telling you something big time is wrong, youve lost 35 pounds, have
pain and are running a low grade fever!!!
