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View Full Version : A Misdiagnosis of IC - Rare Peritoneal Cancer


icnmgrjill
04-07-2008, 09:54 AM
- Imagine having a family history of cancer
- Imagine testing positive for the cancer gene.
- Imagine being so diligent with your tests that you undergo screening for years to detect any early cancer (i.e. Paps, mammograms, etc.)
- Imagine having a hysterectomy on the advice of your doctor to further reduce your risk of cancer
- Now imagine developing pelvic pain. You're diagnosed with IC. One year later, you discover that you never had IC, that you have a rare, fatal cancer instead.

This is the story of Maryalyce Dolan, whose family recently participated in a cancer awareness march in her memory. For IC patients, it might be scary... but there were solid clues along the way that Maryalyce could become a cancer patient. Between her family history and testing positive for the cancer gene, it somewhat boggles the mind that when she did suddenly develop symptoms of abdominal pain and urinary frequency, that the cancer was missed.

Peritoneal cancer has symptoms very similar to those of ovarian cancer. Ironically, some of these also occur in a typical IC patient, including: abdominal pain, frequent urination, constipation, loss of appetite and sudden fluctuations of weight.

According to an article in the Springfield Sun (PA) Dolan had "mammograms and ultrasounds regularly because of a family history of cancer and a positive test for a mutation in the BRCA1 cancer gene. On her doctor's advice, she opted for a prophylactic hysterectomy in April 2005 to further reduce her risk. When she suffered from abdominal pain later that year, she was diagnosed with interstitial cystitis, or painful bladder syndrome, and prescribed a variety of pain medications. The pain never subsided, but second and third opinions failed to illuminate the root cause of her suffering."

Her rare peritoneal cancer was discovered after a trip to the emergency room for pain. Unfortunately, it has a very low survival rate. Maryalyce tragically died last May at the age of 42.

Peritoneal cancer can be quite difficult to detect. It doesn't usually manifest itself as painful lumps or nodes. Rather, it grows as a sheet along the peritoneum. Thus, it's not visible to x-rays. But, her profound risk of cancer is telling.

I offer this story to you because I'm sure that she'd want other patients to know that if YOU have a family history of cancer and/or that you have tested positive for the cancer gene, you'll want to discuss your case with your doctor, especially if your pain is persistent and not responding to typical IC treatments.

Read more about MaryAlyce at:
http://www.zwire.com/site/news.cfm?newsid=19427578&BRD=1306&PAG=461&dept_id=187832&rfi=6

Sadly,

Jill O.

Bessie
04-07-2008, 11:38 AM
Oh, how sad and tragic. I am sorry she had to go through so much and die at such a young age.

formom
04-07-2008, 03:25 PM
That is very sad. I just read a story recently about women also being misdiagnosed for ovarian cancer. That too has similar symptoms to IC and IBS. They say that all your gyn has to do is a simple blood test CA 125 I believe it is, and they can detect whether or not you have ovarian cancer. They do pap smears for the cervix but really nothing for the ovaries. Sorry, I am not dismissing this story, but the more women are aware of other tests and options, the earlier we can start detecting these things sooner. My thoughts and prayers go out to her family. I had a dear friend who passed away 2 years ago at the age of 39, from ovarian cancer. God Bless

leelee88
04-07-2008, 03:34 PM
This is so sad...

Katrina
04-08-2008, 05:41 AM
Thank you for sharing. :(

Nonna
04-08-2008, 07:49 PM
Actually, from all I've been told from doctors and have read, the CA-125 blood test is far from definitive. There can be many false positives and some negatives, so it's not widely used. But I recently read that in conjunction with an ultrasound (transvaginal) you can get a much more definitive diagnosis regarding possible ovarian cancer. When I used to see Dr. Elizabeth Vliet in AZ, she always did routine CA-125 tests with my regular blood tests. Although mine always came back negative, the fact is that the symptoms of ovarian cancer often mimic those of IC so I still occasionally get freaked out about it.