Another Week and the Saga Continues

Since last week, my doctor, Chris Awtrey asked me if he could take my case to an ethicist at Beth Israel. Here is the outcome. He suggests that I write a letter to the acting head of OB/GYN, Dwayne Pursley, (former neighbor on High Street, Newburyport). From there, he is hoping that it will be heard by a medical review board at Beth Israel and perhaps used as an instuctional case at Beth Israel. I would not pursue this in any other forum.

I developed Stage IV, grade 3 ovarian cancer while being monitored. This is the most advanced form of cancer which has the worst prognosis. There is evidence in prior ultrasounds of things that should have been investigated and weren't. Of course looking at this retrospectively makes things much more apparent. It will not change the outcome for me, but may help someone else.

History: I was an infertility patient 1993-1996 and was fortunate to have conceived both of my children using IVF. I was also exposed to large doses of follicle stimulating hormones, which raise the risk of cancer of the ovaries and breast. (The medical community has not definitely established this. Call it my own hypothesis: If less exposure to estrogen provides protections from ovarian and breast cancers, than it stands to reason that more exposure would present more risk. It has yet to be definitely proven, but I was aware of the potential risk.)

After having children, my OB left Beth Israel because of her own family vs. doctor lifestyle and did not recommend a replacement. I found a doctor through Boston IVF who has been my gynecologist for the past 10 years. She is not a BI doctor, but has hospital privileges. She and I set up a monitoring system to allay my fears which involved ultrasound monitoring every 6 months and a blood test called CA-125 (which is 60% effective). That is as good as it gets for screening for ovarian cancer. There are other things currently being studied which look promising. Anyway throughout this process, there was a small cyst discovered in 2002 which was 2 cm in diameter, benign appearing. " Cysts come and go...not to worry." But this one kept persisting.

In all my discussions with my doctor, this was presented as a simple, fluid filled cyst which was benign, benign, benign. There is no reason to remove it because when you undergo menopause, oftentimes these cysts go away on their own. This conversation continued until 12/07 when the cyst had grown to 5.5 cm, but still simple and benign appearing. When I asked about consulting an oncologist, it was dismissed. She said that they are only removed if you are experiencing symptoms.

Now, Dr. Awtrey tells me that in my ultrasound studies as early as 2004, he notices an echogenic nodule which connected the cyst to the ovary and provided blood flow. This got his attention because cancer and even precancer develops its own blood supply. However, he is developing this study retrospectively in June 2008.

This was never discussed and unfortunately although it is noted in the reports, I never got copies of the actual report, but relied on my doctors interpretation which failed me. I had an appointment with both my new BI gynecologist and BI GI doctor on May 21st and May 13th respectively. I never made it to these appointments because I was hospitalized on May 10th for a large 12 cm mass which had taken the place of the simple cyst attached to my left ovary. The ovaries were both cancerous, as was the cervix and a block of tumor which had grown into my rectosigmoid colon. In fact, it was the tumor block in the colon which was producing the most symptoms as I was complaining about pain in my left side and the inability to pass stool reliably. The barium from the CAT scan finally proved impassable. I was most focussed on the GI symptoms because I had had so much pain related to eating.

Unfortuntely, by the time I was hospitalized the cancer had metastasized and spread around my abdomen and passed through the lymphatic system to the pleural cavity around my right lung. I was starting to develop symptoms which I thought were asthmatic due to seasonal allergies. That in combination with a crushed bladder is what got me to the hospital. The abdominal surgery went well, since major organs weren't involved. The surgeon feels he removed all of the visible tumor cells. Unfortunately the cancer in the lung is inoperable, so we are relying on chemotherapy to attack those tumor cells.

Let's hope for the best outcome. It may be a case study to watch!