Alice Rouff’s Story.
I had always gone for regular gynecological examinations and was being seen annually by an endocrinologist. In 1989, after having an ultrasound to check on an ovarian cyst, I was told that the cyst had grown.
I was advised to have a hysterectomy. I had the surgery on November 2, 1989. When I woke up after the procedure, I was informed that I had early stage Ovarian cancer.
The Doctors seemed very hopeful for my recovery because it was found relatively early, stage IIC. I was treated with six chemotherapy treatments, once every 3 weeks. The type of chemotherapy was Cisplatin and Cytoxin.
Life was good for two years until I was diagnosed with a recurrence in March 1992. I was not feeling well and went to several doctors including my internist, and a gastroenteroligist for a colonoscopy. I went for an abdominal Xray and was told I had a mass on my colon. The major symptom I had was abdominal swelling and severe pain. Every thing was normal just 3 months before. I didn’t know how I was going to get through this again, since I had been through it once before. It was a difficult time for me and my family. Fortunately we had a good medical team, support system from family, friends and an Ovarian Cancer support group.
In dealing with the recurrence, I decided to go for three separate opinions from gynecological oncologists. Although their opinions were all different, my decision was to operate first, (de-bulk) and then get at least 6 more chemotherapy treatments.
At that time, I had a ten inch tumor removed from on my colon. It was decided to use an experimental type of chemotherapy -inter-peritoneal bathing of the abdominal cavity with Carboplatin and Etopiside (VP16), once every 4 weeks. In order to do this inter-peritoneal bathing, during the de-bulking surgery, a tube was implanted in my abdomen that led to a port under my rib cage for the chemicals to be administered. Six treatments were recommended. The treatments were so effective that only four treatments were necessary. Six weeks after my last treatment I had day surgery to remove the tube and port. The side effects for this treatment were similar but were not as severe as the first set of treatments.
Because this was a new procedure in 1992, we had to argue with the insurance company to approve this treatment. My recommendation is that physicians assist in talking with the insurance companies, when necessary, in order to get the best treatment for the patient.
Because the recurrence came without any warning, I still see my gynecological oncologist every six months and get a blood test for ovarian cancer, a (CA125) every 3 months. So far so good.
On the subject of family history and genetics, my mother had breast cancer and died of brain cancer. Given that I am an Ashkanazi Jew I was concerned enough about these issues to undergo genetic testing. I underwent this test, not so much for my benefit, but for my Fraternal twin daughters and granddaughter’s benefit. It turns out that I do have the BRAC I gene.
When it was discovered that I had the BRAC I gene, the gene that is believed to be prevalent in Ovarian and breast cancer, the hematology- oncologist went through the various options that are available at this time. They started with:
1. Having a double mastectomy. (NOT AN OPTION to me). I believe in quality of life more than the quantity of life.
2. Stop taking hormone replacement therapy.
3. Get tested for breast cancer more often. Have a mammogram once a year and a breast MRI once a year. (Six months apart).
4. For women with ovaries, it is suggested that they have their ovaries, fallopian tubes and uterus removed after they have their children.
Additionally, it is believed that women who have the BRACA I gene are more susceptible to melanoma and colon cancer.