When Helene Jaffe's ovarian cancer was caught, she had a grapefruit-size tumor that had metastasized. Despite daunting odds – her doctor estimated her chances of survival at about one in three – Jaffe not only beat back the cancer, she survived a recurrence. Twenty years after diagnosis, she is living a different life. "After any life-changing event, you examine where you are and where you want to be and lay out a different path," she says. "And you don't waste your day doing things you don't like."
Ovarian cancer is notoriously difficult to detect early on. How were you diagnosed?
I was not well, but in the vernacular of today, I didn't know my body. Therefore, those very specific signs that I was not well eluded me.
One of the signs of ovarian cancer is a change in urinary and bowel function, which I did notice. I went to see a urologist. He palpated me and told me to go have lunch and come back in an hour for a sonogram.
After the sonogram the radiologist led me by the hand to the waiting room, where my husband and daughter were sitting. We were on our way to take our daughter to the airport. The radiologist said, "We have determined that you have a very large tumor."
I told her that I'd go to the airport with my family and come back afterward. She said, "Ms. Jaffe, I'm unable to release you. I've already called your gynecologist and he's waiting for you." She walked me the two blocks to my gynecologist. It was quite an experience.
Ten days later I had a total hysterectomy, followed by nearly a year of chemotherapy.
How advanced was the cancer?
At the time, my doctor told my family that I had a 33 percent chance of survival. I very luckily had a type of cancer, epithelial cancer, that was treatable, but the tumor was the size of a very large grapefruit and the cancer had spread all over. I was a mess.
I was emotionally a mess, too. I was the first of any of my friends to have to deal with this type of thing, and I was relatively young. I was frightened because no one knew anything about ovarian cancer. I found out through some digging that my father's sister had had ovarian cancer. Her daughter was diagnosed with breast cancer six weeks after I was diagnosed.
Ovarian cancer has been called an Ashkenazi Jewish disease. That's not to say that non-Jewish women don't get it, but there is a proliferation of breast, ovarian, prostate and colon cancer in the Ashkenazi [Eastern European] Jewish population.
So you underwent genetic testing?
Five years after my surgery, I came to UCSF with my daughter for genetic testing. We learned that I was BRCA2 positive and so is my daughter. I had both breasts removed by Dr. Laura Esserman [UCSF breast surgeon and director of the Carol Franc Buck Breast Care Center], and I had a TRAM flap reconstruction. My daughter had a prophylactic oophorectomy [removal of the ovaries] when she was 40. She has a daughter as well. We're very fortunate that genetic testing is available and can help us make the right decisions about our health.
How has your life changed since the diagnosis?
I have a whole new way of living life. Exercise is a very important and dominant part of it. I do it so I'll be in great physical condition in case the cancer comes back, which it did in 2001.
I changed my eating habits. It took a while to convince my husband, but now we're locavores. We go to the farmers' market every week. I buy directly from local fisherman and farmers; I don't buy in the stores. We eat seasonally. I haven't bought eggs from the store in I don't know how long. But we're older and have the time. It would be much harder for two working parents to do what we do.
You make choices, you don't waste your day doing things you don't like. You understand mortality. When I was young, if I read in the newspaper that an 80-year-old had died I thought, what a nice full life he had. But now my husband is 73 – 80 doesn't seem that far away! When is life over? When we stop functioning.
We travel more. We went to Africa again. I don't think I could ever go to the zoo again, after seeing the animals roaming around their land. It was an extraordinary experience – I had to pinch myself.
I say a prayer of thanks every day. I never want to take for granted what I have. I'm not religious but I've gotten a little spiritual. My husband makes fun of me, but I feel I'm living such a wonderful life, I need to acknowledge it somehow.
With any life-changing event, whether it's disease or whatever it may be, you examine where you are and where you want to be and lay out a different path.
And you started raising money for ovarian cancer research.
A good friend of mine said, let's do something about this disease. So we started the Helene Jaffe Ovarian Cancer Fund at UCSF. It's all grassroots: I hand-address every envelope; I write every thank-you note. We've collected more than $200,000.
One of our primary goals was to make the symptoms known. We started out hoping to have tools to test for the disease, but it's very evasive. Now we're just trying to find a treatment that will get us well and mitigate the difficulties of dealing with the disease. When I was sick, my treatment protocol was 15 years old, and they're still using it. Now they've got a new drug starting phase III trials, and I hope to God it works because we need a new breakthrough.
There's not a lot of research being done on ovarian cancer for one very important reason, which is that 33,000 women are diagnosed every year. What drug company is going to get rich off of those numbers? That's why raising money from a grassroots level, like we're doing, or from NIH [the National Institutes of Health], is so important.