My name is Ellen Kleinbaum. I am a 15-year survivor of ovarian cancer. I am so pleased to be here and to share my story with you.

I am a walker. I love to walk around the lakes. During the summer of 1991 I noticed that while walking around Lake Calhoun I would have to stop and use the outhouse. This was unusual for me. I also had a brief twinge of pain once in awhile. We all do, so I was not concerned. However, I went to see my Gynecologist a month earlier than my scheduled annual check-up. He put his hand on my tummy and remarked that he would think I was pregnant if didn’t know better. He had done a tubal ligation on me 15 years earlier. He scheduled an ultra sound for me a few days later because during the pelvic exam he felt a mass pressing on my bladder. He couldn’t tell where the mass was attached, but said even if it is on the ovary, there was only a 15% chance that it would be cancerous. He also scheduled me for a hysterectomy the next week.

The doctor, not my gynecologist, who was in the room during my ultra sound was not reassuring. When I asked him if he could tell where it was attached and if the surgery would be a bikini incision or up and down, he snapped at me that I should really be worrying about the mass, not the scar. I went home in tears! However, I was confident that it was not cancerous. I felt great and told people at work I would be back in 4 weeks.

On July 29, 1991, I checked into the hospital for the hysterectomy. Imagine my shock when I woke up and my family was standing around my bed crying. I had stage IIIC ovarian cancer. I was very lucky that my gynecologist acted very quickly. My gynecologist, who had delivered 2 of my 3 children, was visibly upset when he explained my diagnosis to me. He recommended a gynecologic oncologist who I went to see shortly after getting out of the hospital.

I had many new decisions to make. Should I be part of a trial clinical or not? Should I have a Groshong, a main line surgically implanted for chemo delivery or not? I decided against the trial because one possible arm was disturbing. It would have involved chemo delivered right into the peritoneal cavity through a shunt. I did have a Groshong and that was a good decision.

As a single parent of 3 children, I faced many challenges. Doctor appointments became a huge part of my life. I had a new network of very important people in my life, that being a great team of medical and professional staff encouraging me through 6 months of cisplaten and cytoxin chemotherapy and a few complications along the way. I developed a systemic infection that put me in the hospital off and on for nearly the entire month of December. Chemo was followed by a second-look surgery and the good news that the biopsies were negative.

I was offered the opportunity to have an additional treatment, P32, a radioactive fluid, injected into my peritoneal cavity. After much internal debate, I agreed to have it, as I believed this would be an extra insurance policy. After being injected with the fluid they put me in a bed and for a few hours we did what is called rock and roll. They changed my position every half hour – head up, head down, right side, left side – all the while I watched movies. The purpose was to swish the fluid around and coat my entire peritoneal cavity. I did very well for the next year and a half after that.

Then at a three-month check-up, during the pelvic exam, I saw the doctor’s face change and I knew good news was not going to follow. I recurred in the fall of 1993. This resulted in having my third surgery followed by three treatments of Carboplaten and Taxol. Taxol was not offered when I was diagnosed because it was still in the experimental stage. I regained my strength and was again back in remission.

At the time, I was the human resources manager for Kinko’s copy center. I was at one of our stores in the fall of 1994 when I began bleeding. Knowing this was not a good sign, I immediately called my clinic and went in for a biopsy. Sure enough I recurred once again. I had 6 courses of Carboplaten and Taxol. My last treatment was in March of 1995! So far, I am still in remission and life is wonderful!

About 4 years ago I went through genetic testing and discovered that I am BRCA II positive. I was expecting a positive result since my Dad’s sister died of ovarian cancer and by all standards I should have been low risk. I had 3 children, had been on birth control pills and was only 42 years old when diagnosed. However, I was surprised at my reaction when the counselor slid the paperwork in front of me. The statistics are overwhelming. I have an 84% higher chance of having breast cancer and a 27% higher chance of having ovarian cancer than other women. I already had ovarian, so the breast cancer risk was daunting. A prophylactic double mastectomy was suggested. I have opted not to do that at this time. Instead I have both a breast MRI and a Mammogram every year. I did the testing for the sake of my daughters. As they are still having families, they have not yet chosen to be tested. I would like to see them be tested right away.

My being here today is nothing short of a miracle! I have been off treatment for 11 years and a survivor for almost 16 years! I have been there for so many milestones, including the marriages of 2 of my 3 children, the birth of 3 granddaughters and recently the first grandson. I have pictures of them all, which I would be happy to show you.

You are probably all wondering what my secret is to being a miracle. I’ve given this a lot of thought. Here is what I believe helped:

First, my gynecologist acted quickly. From the time I visited him until my hysterectomy, my first surgery, was only a total of 2 weeks.

Second, he immediately recommended a gynecologic oncologist and stressed how important it was to see a specialist. I was treated very aggressively.

And third, treatment from 1991 to 1993 changed quite drastically. I tolerated it better thanks to new drugs that fight nausea. My body responded to the chemo, it worked for me. New drugs are being developed as we speak. It is the research and development that gives us the best chance of survival. My children and grandchildren are relying on us for their future. And so are yours.

Throughout the many stresses of facing cancer, I could always rely on the patience and understanding of the nurses and doctors. Even though they had huge numbers of patients they were helping, I never felt rushed or neglected. They listened to my concerns, answered my questions, helped me make tough decisions and always had a smile for me. They gave me the courage I needed during such a difficult time.

I have a very wonderful life since cancer. I’ve been to Israel 5 times. My most recent trip was a trip to China in May 2007. Of course, I still worry about another recurrence and I worry about my daughters and granddaughters. But, I make every attempt to live life to the fullest.

Because of the dedication of MOCA and its supporters, and the doctors who are doing the research, we can beat this disease. It’s the research that is going to make a difference.

THANK YOU!

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