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First Person: An Advocate for Healthcare Innovations Becomes a Patient

October 8, 2010
Patients are always on our minds at BIO as we work to increase access to safe and effective therapies by advancing policies that support innovation. We all have friends and family members living with chronic conditions or fighting life-threatening diseases, such as cancer, Parkinson’s or ALS.

Disease hit close to home recently when a member of the BIO family, Deputy General Counsel for Healthcare Sandi Dennis, was diagnosed with breast cancer. Fortunately, it was caught early and her prognosis for a long and healthy life is very good. Sandi’s positive attitude, bravery and ability to find the humor in the daily challenges she has faced (from chemotherapy to wig-shopping) has been an inspiration to all of us. In observance of National Breast Cancer Awareness Month, Sandi agreed to share her experience as a patient with us.

Although there have been great strides in cancer treatments in the past few decades, including innovative biologics that eliminate the need for traditional chemotherapy, we still have a long way to go. While scientists conduct research in labs across the country, we at BIO will continue to educate policymakers on the need to have public policy that supports innovation through strong intellectual property protection, fair and appropriate reimbursement, and government funding for early-stage research. -- James C. Greenwood

Life took an unexpected detour for me this year as I learned first-hand what it is like to be a cancer patient. I’ve long understood the importance of therapeutic advances for patients with serious diseases from the perspective of a healthcare lawyer and advocate for the biopharmaceutical industry. But suddenly, cancer was not just them. Cancer was me.

Late one night in April, while trying to print out my boarding pass for an early morning flight to Mexico for a week of yoga and hiking, I felt a marble-like mass above my right breast. It really was just a random movement, scratching under my arm or something. If my Internet connection had been better, I may never have felt it. I’m healthy, exercise almost every day and have no family history of breast cancer, so I was shocked to learn two weeks later that the mass was malignant.

In fact, I should not have been surprised. One in eight women who live to the age of 85 (which I fully expect to do) will develop breast cancer. It is the most common cancer diagnosed in women in the United States, excluding skin cancer. One in two men and one in three women will get cancer sometime in their lives. I am female; over age 50; had my first (and only) child after the age of 30. These are my risk factors. Someday, through advances in comparative analysis and personalized medicine, physicians will be able to ascertain the exact genetic determinants for each individual patient’s cancer.

The next surprise really rocked my world. Based on my pathology report, I learned that in addition to a lumpectomy and radiation, chemo would be part of my treatment. The dreaded element of chemo – a vision of months of illness, being bald and pale and sickly – had not been on my radar screen. I learned that it’s not only size that matters, but also the type of tumor. And while advances in medicine now enable targeted, gentler treatments for tumors that test positively for estrogen, progesterone, or the Her2 protein, those of us with so-called triple negative breast cancer are left with plain old-fashioned chemo.

My surgery in early May brought more good news, bad news: successful lumpectomy, clean margins, but some positive lymph nodes, making me stage II. Very significantly, my other good news was that my survival was never in question. My oncologist said my chance of survival was 100 percent, and he is an extremely sober and wise man. I began to focus on preparing for what would come next – the beginning of chemo and loss of my hair.

It is perhaps shallow but true that hair loss is traumatic; clearly it is temporary and far less significant than being diagnosed with a serious disease or other side effects of cancer. But in my pre-cancer world, even a bad haircut or otherwise bad hair day could be disconcerting. Now, every day would be not just a bad hair day, but a reminder of my status as a cancer patient.

Meanwhile, back at BIO headquarters, three colleagues in the legal department decided to shave their heads to show solidarity with me and to raise money for breast cancer research. How could I be distraught over my own circumstances when my colleagues were making such a sacrifice and public showing of support? Granted, at least one of them was already follicularly challenged, but the other two had full heads of hair. I never imagined that anyone would take an action so dramatic to support a colleague.

I felt like the luckiest girl in the world as colleagues turned our conference room into a barber shop and created a party atmosphere with snacks and music. The shaving was done by me and BIO’s COO Scott Whitaker, who had driven home that morning to get his electric razor after determining that the one we had was inadequate.

Not everyone chooses to make their treatment so public, and it is obviously a personal choice, with no right or wrong decision. For me, it was really helpful. I felt folks rally around me, especially my close friends and even a few staff members I barely knew who wrote to me of their own cancer experiences and sent poems and headscarves.

My most difficult decision was whether to choose standard treatment or to participate in a clinical trial. The standard treatment (one of several standard treatments actually) would work just fine, I was told, but the experimental version might be even better. I read medical literature about the drugs and treatment regimens, and I was fortunate to have friends with the expertise to help me evaluate the information and access to experts at NIH and in the oncology community. Still, I struggled with the decision. The clinical trial would be cutting edge; I would help to advance science; and I might be treated with what would later become the gold standard. Then again, it is randomized, so I might not. I opted for standard treatment, as I could not ignore the voices in my head that warned of the unknown.

After the BIO International Convention in May, I started chemotherapy. I underwent six treatments, three weeks apart. Fortunately, the treatment overall has been far more tolerable than I anticipated. Even I, who have been involved in healthcare policy for decades, did not realize how advanced treatment of the side effects of chemotherapy had become. Killing whatever stray cancer cells might be floating around my body is a laudable goal, but to me, the real wonder drugs are those that helped me maintain my quality of life and made me so much less cancer-patientish. I had worked on cancer treatments before, even worked on the FDA approval of one of the three drugs I was treated with. I expected a very tough road. I worried about everything from nausea to the suppressed immunity that many cancer patients experience.

I was lucky that most of these worries were not realized. I took a relatively new drug that blocks the nausea trigger in the brain, and it really worked for me. I got shots to maintain my white blood cell count so I was not immunocompromised. For the first half of chemo treatment, I felt really good – probably about 95 percent of my usual self. I worked every day except for a day or two around treatment and continued to work out and practice yoga. That changed in the second half, as the drugs accumulated in my body and worked their magic. It took longer to recover from each treatment and by the last one, I was exhausted. My red blood cell counts were low, causing anemia (which lingers still) and some other minor side effects. I felt a bit like the Princess and the Pea near the end; anything that might happen in regular life was magnified while under the influence of chemotherapy.

I finished chemo in September and just started daily radiation treatments which will last for at least six weeks. I celebrated a bit when chemo was over, and I’m sure the end of radiation will feel like a huge step. I can get back to my life with fewer interruptions and start to have some days when perhaps I don’t even think about cancer. I admit it has taken an emotional toll as I try to integrate my status as a cancer patient into my life.

I have learned so much from this experience. One can actually have a meaningful and joyful life while undergoing treatment. And while the treatment of cancer has advanced significantly in recent years, there is much more to discover. Most of all I’ve learned that the silver lining is truly being held up by family, friends, and colleagues – people who have been there for me on good days and bad days, who help me keep the faith and know that very soon I’ll get my mojo back.