Sisterhood of Survivorship
Sharing, Caring, Surviving
Susan K 's Story
Year Diagnosed: 1997
Type of Cancer: ovarian
My story is a lot different than most ovarian cancer stories.
I was 59 years old in March of 1997 and had never felt better in my life. We had just returned from a week's vacation in Cancun and went to see my ob/gyn for my yearly check up. At the time of the visit, my doctor said everything looked good and he would be in touch with the results of my Pap smear. Six days later he calls me and said there are cancer cells present on my Pap smear but they are not typical uterine or cervical cancer cells. He said we should schedule an exploratory surgery as soon as we could. This was a Wednesday and the following Monday I had the surgery. He came to see me after the surgery and said he had good news and bad news. The good news was that I did not have either uterine or cervical cancer but the bad news was that I had ovarian cancer but that it was probably an early stage. I was devastated as not a year earlier I had lost a friend of 40 years to ovarian cancer. We then scheduled the hysterectomy for that Friday. After the surgery and getting the histology report, I was diagnosed with a stage 3C, grade 3. This diagnosis, of course, came as a complete surprise.
My surgery was done by an ob/gyn and I should have had the choice of going to a gynecological oncologist. However, this doctor never mentioned sending me to a specialist and the diagnosis came out of nowhere and took us so completely by surprise we didn't know what to do. I was so mortified and had no one to talk to about all of this, so we just let him do the surgery. Fortunately for me, he appeared to have done a good job. Within a week or so after my surgery, I did learn of the specialists that handle these kind of female cancers. I confronted the doctor with this and he said he felt confident he could do my surgery and he did. He also started preaching to me about life and death and started spouting off survival statistics and I said to my husband, we are out of here.
Also, in this process, when I did ask him to recommend me to a gynecological oncologist, he didn't do so. I went and found an oncologist on my own. I see a medical oncologist and also see a gynecological oncologist.
I have had a long journey with this disease. My first chemo treatments started three weeks after my surgery. I was admitted to the hospital for two days for my treatments. I had taxol/cisplatin over a 27-28 hour period. The anti-nausea drugs were not as good as they are now and I would be very ill for days after the treatment. After six of these treatments, my numbers were down to 7 and I was in a remission for two years. Then my numbers started rising. This time around I was given taxol/carboplatin and got a six-month remission after I finished that treatment. This started in January of 2000 and I have been in almost constant treatment since that time. After my short remission I had doxil, gemzar and then weekly taxol. When the weekly taxol stopped working we tried oral vp-16 and hexalen. Next we tried carboplatin as a single agent every month and was in that protocol for 3 years with a short break somewhere in the middle. I am now getting low dose taxol weekly. I have had over 130 treatments and due to that fact, most of my treatments are at a lower dosage. A friend of mine recently said that I am just like the energizer bunny. I just keep going and going and going. I hope to keep on going for a long time.
One message I would like to pass on is this journey has been made easier with wonderful doctors, family and friends. I have met women whom I would never have met and have made some wonderful friendships. The next and a very important message is to make sure you are seen by a gynecological oncologist for surgery and treatments.
In September of 1999, I received a phone call from a gal named Molly Cade and she got my phone number from the list at Conversations and also from the ACOR computer list. She said she was interested in starting a group of ovarian cancer survivors to spread the word about ovca. I was going to a dinner the following evening of some ovca survivors that I had met and Molly and Kris Warn came along. She told her story and we got a few other gals and before we knew it, MOCA was formed. By January of 2000 we were incorporated and the rest is history. I am so proud to be a founding board member and still an active member of MOCA. It is a wonderful organization and we are definitely educating women and others about this disease.
