THE BLOG
09/28/2016 01:54 pm ET Updated Sep 29, 2017

Gene Wilder's Greatest Performance, How to be a Cancer Advocate: Medical Tips for You

On 8-29-16, Gene Wilder passed away in Los Angeles. His greatest artistic performances have entertained generations of people. From Willie Wonka and the Chocolate Factory to Young Frankenstein, The Producers, Blazing Saddles, Silver Streak and Stir Crazy, as well as countless other performances, 7 decades of Gene Wilder roles have left memories of happiness, laughter and joy in most people's hearts.

But Gene Wilder's greatest performance (to cancer patients and survivors) extended beyond stage and screen into his mission to help reduce the impact of cancer. He came to this quest in a strange way.

In 1982, Wilder's wife Gilda Radner was afflicted with ovarian cancer in the middle of a comedienne career that included some of the most memorable skits and performances on Saturday Night Live, along with other live, film and radio performances. She married Gene Wilder in 1984. Sadly, after a life-challenging fight against ovarian cancer, she died after 3 years of treatments with surgery, radiation therapy and chemotherapy.

Remembering her fight against the ovarian cancer, Gene Wilder was frustrated how her symptoms went undiagnosed by many physicians. In 1985, she had begun developing fatigue, abdominal cramps, pains in her upper legs, and bloating of her abdomen. An ultrasound of her abdomen was interpreted as not showing cancer. But after the 10 months, in 1986 finally a diagnosis became apparent: advanced stage IV ovarian cancer. In 1988 she thought she had the cancer licked because she was in remission. However, by December 1988 it had spread to her liver and lungs, and in May 1989, she passed away.

It was then that Gene Wilder started Gilda's Club with Gilda's psychotherapist Joanna Bull, broadcaster Joel Siegel and actor Mandy Patinkin. The goals were to help patients through supportive care, advice, and the power of shared experiences in cancer patient groups. In efforts to help fight and conquer ovarian cancer, the group also promoted earlier diagnosis. Sadly, that fight to cure more cancers still continues. But the foundation has helped to focus interest in patient advocacy and to make people aware of the remarkable advances in treatment of ovarian malignancy. In 2009, Gilda's Clubs with 4200 members merged with the Wellness Community to form the Cancer Support Community, the largest patient support organization in the country. Gilda's legacy continues to grow today.

Gene Wilder went further. In 1991 he testified before congress about the need for earlier diagnosis of cancer and promoted funding of cancer research to develop diagnostic tests. He then supported Cedars-Sinai Medical Center in developing the Gilda Radner Ovarian Cancer Detection Program. Gene Wilder complained that despite Gilda's extensive family history of ovarian cancer in her grandmother, aunt and cousin, doctors still did not suspect ovarian cancer as a diagnosis until it was too late. So he then supported the Cedars-Sinai center for gene testing.

Ovarian cancer is the 5th most common cause of cancer deaths in women. In 2016, 22,300 women will develop ovarian cancer and over 14,000 will die of it. Because its symptoms are very mild in early stages of ovarian cancer, the disease is often only diagnosed in late stages when cure is less likely. Early symptoms of ovarian cancer can be misinterpreted as other diseases, as in Gilda's experience. Ovarian cancer symptoms include pelvic or abdominal pain, bloating, feeling full after eating, trouble eating, urinating frequently or feeling of having to urinate urgently, fatigue, constipation, pain after intercourse, changes in menstruation, weight loss or back pain. If you have any of these symptoms, check with your physician.

Treatments of ovarian cancer have also improved. The 5 year survival has improved from only 36% in 1975 to 46% in 2011. Advances have included the identification of genetic causes of ovarian malignancy (mutations in BRCA1 or BRCA2, PTEN, or the genes that cause hereditary colon cancer are examples), improvement of surgical removal of ovarian cancer, and the use of less toxic and more effective chemotherapy such as carboplatin and paclitaxel. Patients are helped by biological therapy such as bevacizumab, targeted therapy such as olaparib which can reduce the risk of ovarian cancer recurrence by 80% (this could have helped Gilda), and immunotherapy with nivolumab. Survivorship has improved with identification of methods to reduce side effects of treatments, about which Gilda's Club and the Cancer Support Community help make patients aware.

The passion that Gene Wilder brought to his support of Gilda's Club has helped to advance the care of cancer patients. This leadership makes Gene Wilder a hero for patients and families who face cancer and should be an example to survivors and their families. The challenges to cure cancer and support cancer patients is far from over, and individuals who care deeply about these issues should follow the path of the actor: become active with advocacy groups and charities that promote advances in cancer and help individuals fighting cancer.

Here are Dr. Cary's tips for women based on Gene Wilder's heroic life:

• Become active with a charity or patient advocacy organization which promotes cancer cure and research to improve patients' lives and survivorship. Don't just contribute money, but also volunteer to help in the mission and in fundraising. Become an ambassador for the progress being made in this devastating disease.
• Be aware of your risk for getting cancer. In women, emphasize finding out your risk of breast and ovarian cancer by using your physician to help determine your chances of getting these cancers. She/he can help you decide if you should get gene testing. Your family history, symptoms, and reproductive history can help to calculate how high your risk might be. If your doctor cannot tell you what your risk is, get a consultation with a specialist to help. More advice on prevention and risk assessment, getting specialist consultations, and obtaining second opinions can be found in my website and book Surviving American Medicine.
• If you have any of the symptoms of ovarian cancer I described above, be certain your doctor does the appropriate diagnostic tests (including ultrasound, CT scans, MRI scans, and blood tests) to diagnose the cause and make certain whether it is early stage ovarian cancer. If your physician cannot find the cause, get a second opinion.
• Screening tests to detect cancers earlier when they are more curable can be important in breast and ovarian cancer. Be sure to discuss when you should get mammograms, tomosynthesis (3D mammograms), ultrasound or breast MRI for breast cancer. Your doctor should also advise whether you should get trans-vaginal ultrasound (TVUS) and blood testing for CA125 to help detect ovarian cancer. If you have any symptoms, you should expect actual diagnostic tests, not just screening tests.
• If you have a family history of any cancer, be certain your primary care physician knows this. Remember to ask if you should have genetic testing or more frequent cancer screening tests.

Gene Wilder led an exciting and eventful life. But in addition, his exemplary promotion of cancer patient support, early diagnosis, and education through Gilda's Club was for cancer patients and survivors his greatest performance. Although he never received an Oscar for his acting, he deserves a Medical Oscar for his impactful efforts on behalf of cancer patients. His life should be one that inspires you as well.