In February 1993, I had a total hysterectomy (including ovaries) to relieve excessive bleeding during menstruation. Pathology indicated that all removed tissue was negative for cancer. I had not begun menopause, and I was 50 years old; after surgery, my gynecologist put me on Hormone Replacement Therapy (HRT). After my cancer surgery, I switched to NHRT (natural hormone replacement therapy…soy, tofu, etc.).

I have always been an extremely healthy individual and take NO medications, only vitamins.

MY OVARIAN CANCER DIAGNOSIS:
In May 1998, I had persistent constipation and a noticeable increase in my abdominal girth. I visited a gastroenterologist. He examined me and ran fecal matter tests and blood tests. These were negative. He indicated that I probably had Irritable Bowel Syndrome (IBS) and prescribed Prilosec®. I asked for further testing.

He had a pelvic X-ray done, and it was negative. He told me I had IBS. I requested further testing. A nuclear liver scan was done and was negative. He told me I had IBS, and his nurse practitioner talked to me at length about IBS and gave me some literature on it. I could not agree with the diagnosis because of my increased girth. (I couldn’t wear any of my clothes that buttoned at the waist.) I requested further testing.

The doctor and nurse practitioner were getting a little frustrated with me. They reluctantly agreed to have a pelvic and abdominal CT-scan done. This test did not reveal a tumor, but it did show (abnormal) fluid in my abdomen. This fluid is called ascites. I had it drained; analysis revealed cancer cells in the fluid.

They still could not tell me where my cancer originated and wanted to refer me to an oncologist.

I was not familiar with any cancer doctors/treatment in the Naples FL area. Since I’m from Michigan and my daughter lives only ten minutes from the University of Michigan Cancer Center, I opted to go there for treatment.

Before I left Naples, I had the gastroenterologist run a series of blood tests to narrow down where the cancer might be. One of those tests was the CA-125 blood test (for Ovarian Cancer). Normal is 0-35; mine was 754. I didn’t see how I could have Ovarian Cancer when I hadn’t had ovaries in many years! That’s when I learned that all women are still at risk, even if they’ve had their ovaries removed, for Primary Peritoneal Cancer. The cells from the ovary and from the peritoneum originate from the same stem cell; even after you’ve had your ovaries removed, you still have cells in your peritoneum that are essentially ovarian in nature.

MY OVARIAN CANCER/PRIMARY PERITONEAL CANCER TREATMENT:
Between June 1998 and June 1999, I had six surgical procedures, six chemotherapy treatments, and 36 Whole Abdominal Radiation (WAR) treatments.

During my initial laparotomy surgery, the U of M gynecologic oncologist removed my omentum (which was caked with tumor) and determined that my cancer had not spread to other organs sufficiently to require they be removed. There were cancer cells attached to the outside of my organs, but these were too small and too numerous to remove surgically. It was determined that I had a STAGE IIIc, Grade 1 cancer.

A few weeks after surgery, I had a port implanted in my arm and began chemotherapy to destroy the cancer cells remaining in my abdomen. After two chemo treatments in Michigan, I returned to Naples and finished my chemo treatments with a medical oncologist. During this time, I had surgery to remove the malfunctioning port from my arm and another surgery to implant a double port in my chest. Chemotherapy treatments were completed in October 1998 and I was pronounced "in remission" with No Evidence of Disease (NED).

I chewed on this for awhile and did some research on my own. I decided to have a Second-Look Surgery (SLS) to determine whether any cancer cells survived the chemotherapy. This procedure is controversial and some gynecologic oncologists do not believe it is worthwhile. However, my Florida gynecologic oncologist agreed that I was a perfect candidate for such a procedure. He did this surgery on me in February 1999. He took many biopsies and abdominal lymph nodes. All were negative for cancer…except two, which revealed microscopic cancer cells.

This doctor suggested two different treatment possibilities for consideration. I flew to Michigan and got a second opinion at U of M…something entirely different than what was recommended to me in Florida. So, I flew to Houston, TX to the M. D. Anderson Cancer Center; I was examined by a gynecologic oncologist, and my case was presented to a panel of seven doctors for their treatment recommendation. They recommended something entirely different! Now I had four different treatment options recommended by three different cancer centers in three different states. What to do, what to do.

I did more research on my own and weighed all my options. I decided to take 36 Whole Abdominal Radiation (WAR) treatments from a radiation oncologist. Those treatments were completed in June 1999, and I have been in remission ever since. Following completion of WAR, I developed a lymphocele in my lower pelvic area that pressed on a nerve feeding my leg and caused great pain; this lymphocele was surgically drained and has not caused any more problems.

MY ACTIVISM:
Shortly after completing my WAR treatments, I decided I just had to do something about the general lack of knowledge about Ovarian Cancer. Having done a lot of reading and research on the subject, I felt that if I had all this information and didn’t share it with other women, then shame on me. I learned all I could about various non-profit organizations pertaining to Ovarian Cancer and decided to form a local Division of the National Ovarian Cancer Coalition in the fall of 1999. In early 2002, we resigned from NOCC and formed the Ovarian Cancer Alliance of Florida-Gulf Coast, a 501(c)3 non-profit corporation. Our efforts are primarily in southwest Florida and our mission is to save women’s lives through Ovarian Cancer awareness and education.

I speak to women’s organizations throughout southwest Florida (and in Michigan when I am vacationing there) about Ovarian Cancer and distribute literature to all attendees. There is no fee for this service, but we do request donations to assist us in printing our literature. We are a non-profit 501(c)3 organization, so donations are tax deductible.

We participate in Health Fairs (at a booth with literature to disseminate to attendees), and I have done several television and radio shows on the subject.

We are also working on a project to print Ovarian Cancer Risks / Symptoms cards for placement in doctors’ offices and to be provided to employers for distribution in paycheck envelopes for their employees.

Our Southwest Florida Division of NOCC has obtained Proclamations declaring September as Ovarian Cancer Awareness Month from the following: City of Naples, Collier County, Lee County, and the State of Florida. We have created a display of these for use at Health Fairs and at our events.

Also, we have created a display of famous women who have had Ovarian Cancer. This will be exhibited at all of our events. We believe this will encourage more women to learn about Ovarian Cancer and increase the possibility of early diagnosis.

Please feel free to call me with any questions.