My name is Ellen Kleinbaum. As of 2019, I am a 28-year survivor of ovarian cancer. I am so pleased to be here and to share my story with you.
I love walking. Especially 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, which was unusual for me.
I also had a brief twinge of pain once in a while. We all do, so I was not concerned. Even so, I went to see my gynecologist a month earlier than my scheduled annual checkup. He put his hand on my stomach and remarked that he would think I was pregnant if he didn’t know better. (He had done a tubal ligation on me 15 years earlier.)
He scheduled an ultrasound 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 percent chance that it would be cancerous. He also scheduled me for a hysterectomy the next week.
A different doctor, not my gynecologist, was in the room during my ultrasound, and he 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 was confident, however, that it was not cancerous. I felt great and told people at work I would be back in four weeks – and 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 3C ovarian cancer. I was very lucky that my gynecologist acted 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.
As a single parent of three children, I faced many challenges. I had many new decisions to make. Should I be part of a clinical trial? Should I have a “Groshong line,” a mainline surgically implanted for chemo delivery? I decided upon having a Groshong line (similar to a port), and that was a good decision.
Doctor appointments became a huge part of my life. I had a new network of very important people in my life – a great team of medical and professional staff encouraging me through six months of cisplatin 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 was that the biopsies were negative.
I was offered the opportunity to have 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.
At a three-month checkup, 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 carboplatin 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 a 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 six courses of carboplatin and taxol. My last treatment was in March of 1995.
In 2003, I went through genetic testing and discovered that I am BRCA2 positive. I was expecting a positive result, since my dad’s sister died of ovarian cancer, and by all other standards, I should have been low risk. I had three children, had been on birth control pills, and was only 42 years old when diagnosed. Even so, I was surprised at my reaction when the counselor slid the paperwork in front of me. I did the testing for the sake of my children and grandchildren.
The statistics are overwhelming. I have an 84 percent higher chance of having breast cancer and a 27 percent 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 that time. Instead, I had both a breast MRI and a mammogram every year.
In 2010, an MRI result showed a spot. I was diagnosed with breast cancer and underwent a bilateral mastectomy and more chemotherapy.
My being here today is nothing short of a miracle! I have been able to witness so many milestones, including the marriages of my 3 children, the birth of 3 granddaughters and and 2 grandsons.
You are probably all wondering what my secret is to being a miracle. I’ve given this a lot of thought, and here’s what I believe to be the major factors.
- My gynecologist acted quickly. The time I visited him to my hysterectomy (my first surgery) was only a total of two weeks.
- My gynecologist recommended a gynecologic oncologist immediately and stressed how important it was to see a specialist. I was treated very aggressively.
- 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, and it worked for me.
- Genetic testing showed I was a high risk for breast cancer. Therefore, I was being watched and tested regularly and the cancer was caught early.
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 five times, traveled around the country and even traveled to China. Of course, I still worry about another recurrence and I worry about my daughters and granddaughters. Still, 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!
The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.
