Ovarian cancer is called "the silent killer" because its early symptoms — like bloating, gassiness and frequent urination — are easy to overlook. It's often not detected until it's spread outside the ovaries, making it much more difficult to treat.
When Helene Jaffe's ovarian cancer was caught, she had a grapefruit-sized 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 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 BRCA-2 positive and so is my daughter. I had both breasts removed by Dr. Laura Esserman, and I had a trans flap reconstruction. My daughter had a prophylactic oophorectomy 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 awhile to convince my husband, but now we're locovores. We go to the farmer's 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're able to 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 evey 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. Let's find a researcher and set up a fund. So I asked my doctors who was doing research on ovarian cancer. They introduced me to an endocrinologist at UCSF, Dr. Robert Jaffe — not a relation of mine, although we have the same last name.
We started the Helene Jaffe Ovarian Cancer Fund at UCSF. It's all grass-roots; I hand-address every envolope, 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 three 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 imporant 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 grass-roots level, like we're doing, or from NIH [the National Institutes of Health], is so important.
How were you treated when the cancer came back?
In 2001 I had a recurrence. It was picked up with a CA-125 test and confirmed in a PET scan. I had surgery and more chemotherapy, but the chemotherapy wasn't very effective. My [CA-125] numbers didn't go up or down. Eventually, with my doctor's permission, I went off some of the drugs. I had put on lots of weight and felt horrible, and if my numbers weren't going down, what was the point? When I went off them, my weight went down and my numbers went down.
After the recurrence, I really tried to avoid stress. I turned all the household stuff over to my husband. After running the house for years, I abdicated.
You didn't want to do the management aspect?
I didn't want to do anything. I wanted to read, I wanted to take care of me. I think there's a selfish component when you have a life-threatening disease, and I'm OK with that, because I'm very giving on many levels. I'm always there for my friends and family. I don't use the "cancer card" — at least I don't think I do — but I do understand my own mortality and I don't want to do what I don't want to do.
And you give to others as a UCSF peer counselor for other women facing ovarian cancer.
Yes. That's very rewarding. We don't hear a lot about ovarian cancer, so I think the fear factor is greater. It's important for patients to know that women with this cancer do survive — although I don't like to use the term survivor, because survivors also die. I don't say I'm a survivor, I say I'm a "NAD," for No Active Disease. If I had a button, that's what it would say.
Do you have any advice for others facing a cancer diagnosis?
You don't want to over-research a problem. The web can be your friend but it can also be your enemy, particularly with medical issues. So find those one or two doctors with whom you have a wonderful relationship, and ask them the right questions.
The first time around I had not a clue what to ask — you're in alien territory, called disease. That's where peer support can help.
What are the right questions to ask?
What is the genesis of the disease, and what are all of the possible ways of handling it? Is the cancer small enough to be operated on, or does it have to be shrunk prior to surgery? If so, what are the drugs? Tell your doctor, I want to go into this understanding my disease, understanding my treatment, understanding my outcome. What do I need to know that I haven't asked?
It's very important to tell your doctor that you want to live. I told my doctor, I. Want. To. Live. I want you do everything possible to make sure I come out of this. Take whatever organ you want, I'll deal with the consequences.
Ask, when you open me up and can determine what's at risk here, what are some of the possibilities that can take place? I learned the night before my surgery that there was a chance they would resect my bowel.
Any other advice?
Some women are going through it alone, some are going through it with a partner who doesn't understand what they're going through. Have someone you trust take your partner for a walk and educate him. They can be insensitive to our needs. My husband always saw me as a powerful woman — he didn't understand seeing me weak. He didn't feel I needed the help that I really needed.
There can be a lot of issues with insurance. If you can, assign a good friend, partner or spouse to deal with that for you. Call your insurance company when you're diagnosed and give your permission for that person to deal with insurance matters on your behalf. Don't try to do it yourself, because it's overwhelming.
Know your rights regarding insurance. I had a lot of problems with my insurance company when I was sick, so I called Barbara Boxer's office, who put me in touch with the insurance commissioner in Sacramento. When I explained what was going on they told me, 'Call your insurance company and ask them if they would like to continue doing business in California.' I got a check from the insurance company that week!
Set up your caregivers: who's going to drive you to appointments, who's going to bring groceries, who's going to deal with insurance. That's the very first thing to do when you're entering the disease process. Get all your players in place. Normally a dear friend will be the point person, so the patient won't be disturbed.
On good days surround yourself with people you love, doing things you enjoy, eating foods you love. Don't be afraid to tell them to go home. Try not to feel sorry for yourself.
Friends never know what to say, so they say the wrong thing. They trip over their tongues. Just forgive them. They may be thinking they're glad they don't have the disease; that doesn't mean they wish it on you.
There's a lot of anger with cancer. It's real, you can't make it go away. You need to channel it. One day you'll look back on the experiences and won't be able to remember those little nuances that were so frustrating to you.
Laughter goes a long way. When I was sick my brother brought me a whole box of Johnny Carson episodes.
That probably helps with feeling sorry for yourself.
Yes. But you're entitled, give yourself permission to feel sorry for yourself. Give yourself permission to cry. I found crying to be very cathartic. When I got into the shower in morning, I took in a deep breath and just let it all out. It was like an exercise for me.
I've given that advice to men and women because you can hear in their voices how pent-up they are. There's this idea that you have to be brave — but you're frightened and it's OK to let it out.
Interviewed October 2011 by Sierra Tzoore.
Photo by Eric Desch.