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Abbreviations & Acronyms
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dx |
diagnose, diagnosis
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FSH |
follicle-stimulating hormone
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IBS |
irritable bowel syndrome
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IVP |
intravenous pyelogram — study to look at the kidneys and ureters
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NED |
no evidence of disease
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s/s |
signs & symptoms
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SLS |
second-look surgery
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TAH / BSO |
total abdominal hysterectomy / bilateral salpingectomy and oophorectomy — removal of, respectively: uterus, fallopian tubes and ovaries
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tx |
treat, treatment
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US |
ultrasound
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WAR |
whole abdominal radiation
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Sean
Submitted on 11/01/2000
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So where do I start? Do I start the day in 1990, I went in to get a new IUD
and have the other one removed? The day they put a second IUD on top of the
first? Do I start from the beginning of the low grade infections and immune
suppression that went on for 6 years as a result of this oversight and
have now been linked to the cancer getting a foothold in my body? No that
is ancient history. Something I can't change and something most women will
never have to deal with. Where I will start is from the beginning of the
cancer and what I have learned that might help someone else facing this
disease.
In the the summer of 1995, I felt decidely different. I felt unwell, like I
was slowly being poisoned. I called my internist and insisted she do a
CA125. I had none of the symptoms, no bloating, no frequent urination, no
menstrual irregularities or pain, but she complied. The test came back 36.
Just one point above normal. She sent me for a trnsvaginal ultrasound which
revealed some cysts that we followed and appeared to be resolving. We did
another CA125 several months later and it was 37. I left for 6 months in
Europe. I came back and my CA125 was 39. A gynecological oncologist was
consulted and everybody agreed - nothing to worry about- the values were
too low and the cysts appeared on film to be resolving.
I was not comfortable.
Summer of 1996, I sought the help of a specialist who agreed to do surgery
now that there were a couple of new cysts. By now my values were at 59,
but noone was concerned. Laparoscopic surgery. Cysts were removed along
with an IUD with no copper, I did not know I had, thought it had been
removed in 1990. There was some fluid in the abdomen. Path reports came
back benign. But my CA125 never dropped below 42. Everyone said nothing to
worry about. Maybe endometriosis even though I never had any symptoms and
very little was found during the surgery.
Went back to work, to rock climbing. Summer of 1997, I still did not feel
right and my CA 125 was continuing to rise in very small increments. I went
back to my doctors and literally badgered them to do surgery. Said I would
have my lawyers draft an agreement that would protect them in the event
they took out normal tissue. They agreed and surgery was scheduled.
Laparascopic. The surgeon was surprised. What he saw did not look right.
The pathology reports came back benign but he was uncomfortable with it. A
second surgery, this time a laparotomy, was scheduled. A 3cm implant was
found in the omentum along with several small peritoneal implants. The
ovaries had borderline/LMP cells. The onc recommended Carbo/Taxol even
though the s phase was only 3.
I did not feel comfortable.
My doc had the slides sent to Mass General for a second opinion which
confirmed - low grade serous, stage IIIc. By now I had become a research
maven. Knowledge was my key to getting the best care possible. My research
told me that with an s phase of 3, that chemo was of little or no benefit.
My instincts to refuse it were right on. I then found out that Dr. Bob
Kurman at Johns Hopkins was one of the preemminent experts in gyn/pathology
especially with these so called borderline/LMP tumors. He agreed to review
my slides. The report - Micropapillary serous carcinoma - not benign but
not overly aggressive. Treatment was a dilemma.
By now I had fired my first onc, found a great one in Chicago who shared
the same perspective that I did about patients being a partner in the
healing process. When my CA125 continued to rise, he found an immunotherapy
clinical trial for me to participate in in Nashville, since he also agreed
that chemo was of little or no benefit. While I won't bore you with the
details, it was pretty intense. Got to the point I wondered if we had
really come that far from the days of leeches and bloodletting. Felt like
what we do in the name of curing is pretty barbaric, if you ask me.
I had my fifth and hopefully final surgery in October of 1999, to repair a
rather large ventral hernia, a gift from my first surgeon. We had a gyn/onc
in the surgery and he found everything dead or dying. With the
immunotherapy plus high dose tamoxifen, I am now in remission. The first
time in 4 years.
So what did I learn from this Mr. Toad's Wild Ride through the healthcare
system?
- That a rising CA125, rising continually over time, no matter how low the
values, is a cause for alarm!
- That if they had done a cytology report on the fluid after the first
surgery in 1996, they may have caught this sooner. I never asked the
question, though I thought it. So ask your questions!!!!!
- That if you find your doctor is not meeting your needs, answering your
questions - get rid of him/her and find a team of people you can work with.
This is about what's best for you, not them. Hospitals included!! Did you
know you can ask your surgeon where he/she has operating priveleges and
then interview the hospitals until you find one that meets your and your
doctor's needs (emphasis on your needs)?
- Listen to your body. Listen to your instincts. If you feel uncomfortable,
respect it and keep pushing even if you are told there is nothing to worry
about.
- Educate yourself. It will help you get the best possible care.
- Your doctor has 100 patients. You only have one, yourself. Noone will
take your case as seriously as you do. By making yourself number one, you
can make yourself number one with your doctor. Don't be shy about it.
- If you suspect ovarian cancer, please go to a gynecological oncologist.
Now for the philosophic part - what I am taking away from this experience:
In retrospect, when all vision is 20/20, I thought I was being incredibly
aggressive in taking care of myself. I wasn't. Through this process I
have lost my innocence. Lost the ability to count on all lights eventually
turning green. It is an odd limbo place to be - in the present with no
guarantees that the future will be there as it was before I was diagnosed
with cancer.
Before cancer or serious illness, we have this smugness about the future.
That it will always be there in abundance. So what if we waste a day, stay
in a job we don't like. Serious illness does not allow one to be so smug.
Nor does it allow one to just get by. There is a lesson here we all can
learn about appreciation - that I hope you do not have to get a serious
illness to learn.
At times, I have felt terribly betrayed. Betrayed by my body and betrayed
by modern medicine and the healthcare system. I had the tests. I made them
repeat them every three months and then monthly. Why didn't we catch this
sooner? I researched my doctors, found the best ones. Had surgery at some
of this country's premier facilities. I had staph infections, a ventral
hernia, anesthesia complications that all could have been avoided. I asked
to have chemo sensitivity testing done. I even brought a kit to my first
laparotomy. The surgeon chose not to honor my request as he did not believe
in it. I did not find out until I had woken up from the anesthesia and by
then it was too late.
I came to hate the word patient as it is a submissive word and sets up an
unequal balance of power. As a patient we can be diminished, reduced to a
procedure or set of symptoms- white female 46 years old presenting
with......
Not Sean Patrick, business owner, friend, rock climber who needs her
stomach muscles so a ventral hernia is not an acceptable complication.
This may be a picky point but words and how we frame the dialogue is
important if we are to make changes that make this system more responsive
to "the patients' needs".
Our needs!
And yet through it all, it has been an intensely rewarding experience (
what is this woman some sort of masochist?) The incredible people I have
met who have inspired me with their own struggle, the team of doctors I
finally found and am currently working with, the growth I have accomplished
physically and spiritually are all because of what I went through with this
disease. It has been a blessing in disguise.
I have been to the depths, to the darkest place and have found through
this process an awesome strength I never knew I possessed. There is
opportunity in every situation. It is the ability to recognize it that
distinguishes individuals. To say that I have been stretched beyond what I
considered to be my limits would be an understatement.
I don't dwell on my feelings of loss and betrayal. They are what they are.
I cannot change the events that happened, I only have control of my
attitude and life is so much easier with a good one. I am telling you about
them as it is very natural to have these feelings.
So that's my story. I hope you will share your story with us, so others can
learn from your experience. Just use the submit your story button to send
it. Believe it or not, you have something very valuable to teach with your
story.
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