Patty Gelman - Humor After the Tumor: One Womans Look at Her Year With Breast Cancer

Thank you to all the people on my email list who responded to my missives with gratitude and support. Without their suggestions to turn the emails into some sort of publication, it would never have occurred to me to do so.

We appreciate the time and talent Leslie Zemsky donated to this project. Her enthusiasm encouraged me and her illustrations enhanced the book.

Thank you to the two members of my Park School of Buffalo family: Amy Greene, my friend since the fourth grade at Park, and Margaret Marcus, my former colleague when we taught together at Park in the 70s. They were my editors and tweaked the emails, turning my banter into a better book.

I have enjoyed working with Julianna Jacoby-Patronski, the coordinator of this project at Roswell Park Cancer Institute, and Beth Manos, our layout and design artist.

Thank you to my daughters, Sarah, Lisa, and Susan, and to my husband, Warren. They offered the perfect combination of curiosity, concern, and honest criticism.

Dr. Stephen B. Edge, M.D.,

Chair, Department of Breast and Soft Tissue Surgery, Roswell Park Cancer Institute Professor of Surgery, State University of New York at Buffalo

So that's Patty's story, told as it happened. A personal and unique story. But it's also everyone's story retold with individual perspectives and personal twists by hundreds of thousands of women with breast cancer, and millions of people worldwide with cancer, every year.

Cancer is an intensely personal experience. It affects every aspect of life. Cancer can bring disfigurement, pain, suffering, and premature death. It changes a person's interaction with the world. It affects relationships with family, friends, and colleagues. Ultimately, it changes a life forever. For those who beat the disease, and even for many who don't, cancer redefines life.

Patty gives us an intimate look into her thoughts and feelings during that initial acute phase of diagnosis and treatment. She shows us the coldly rational being, and the emotional and spiritual soul. She shows the interplay of family, friends, and faith in recovery; how zest for life and optimism affect treatment and outlook; and how a cancer victim brings laughter and love to what is otherwise a bleak and humorless picture.

Patty's story also tells of the great strides we have made in treating cancer. When viewed over the decades, the advances are amazing. You only have to go back to 1970one generationto see these changes. In 1970, mammography was a new, unproven, and crude technique. In fact breast cancer treatment was virtually unchanged from the time of Dr. Roswell Park, one of the visionaries in cancer medicine at the turn of the last century. Virtually all women had radical mastectomy, with its severe disfigurement, pain, permanent impairment of the shoulder, and swelling of the arm. Nothing else was available. And even with this, most women eventually died from cancer that spread to other organs.

But in the 70s radical mastectomy gave way to radical change with the application of scientific method to cancer medicine. Research showed that radical mastectomy was not necessary, and the operation was relegated to history (I started surgical training in 1979 and never performed a radical mastectomy in trainingfor surgeons 5 years my senior, it was all they did). And building on these advances, subsequent research studies showed that removal of only the lump itself was needed, so that now we are able to treat most women without removing the breast.

Though mammography then provided crude, unfocused images by current standards, studies started in the 1970s showed that mammography could find small breast cancers that could not be felt as a lump. And the studies proved that mammography improves the odds of survival leading to the current recommendation that all women undergo periodic mammography.

Advances in understanding the biology of breast cancer led to the development of treatments that addressed the cancer cells that spread beyond the breast. Chemotherapy and anti-estrogen hormone drugs given after surgery were shown to actually cure many women who previously would have died from breast cancer with surgery alone. And recent studies showed that Tamoxifen, one of these anti-estrogen drugs, given to women at higher risk of breast cancer, actually reduces their chance of getting the disease in the first place.

Most importantly, work building on research of the last 30 years is revealing the secrets of cancer biology that will provide new approaches that will fundamentally change the way we approach this disease in the coming decades. There is now real reason to believe that the next generation, or perhaps the generation after that, will see cancer as a chronic, controllable disorder: we will be able to predict who will get it, to prevail in its treatment, and even to prevent it from occurring at all.

But Patty's story also sobers us with the many shortcomings and frustrations of breast cancer therapy.

• Despite the proven value of mammography, it did not help Patty. Hers was one of the 10% of breast cancers invisible to mammography. It was only found when she noticed a large lump in her armpit from breast cancer spread to lymph nodes. This is just the situation that we hope to prevent with screening mammography.
• Patty had to receive chemotherapy. We know that 60 to 70% of women with a cancer spread to the lymph nodes like Patty's actually have cancer spread to other organs, and that this cancer will eventually manifest itself, and result in death. But we have no way of determining who are among the 70% and who are not. Despite normal x-rays and scans showing no evidence of this spread, we know it has occurred, albeit in microscopic amounts, in most cases. The only option is to treat all of these women.
• Chemotherapy only helps some of the women who get it. It only reduces the chance of cancer recurrence, and ultimately of premature death, by about one-third. So in Patty's case, the chance of recurrence drops from, say, 60 to 70% to 40 to 45%. In the rest of the cases, the cancer cells survive the toxic chemotherapy drugs and continue growing. We cannot determine in which cases the cancer cells are susceptible to chemotherapy and in which they are not. Looked at another way, almost three-quarters of the women who receive chemotherapy for breast cancer gain nothingeither they weren't going to have cancer recurrence, or the chemotherapy doesn't prevent it. So while it may be life saving, and while women like Patty should take it, we must improve these therapies, and apply them only to those who benefit.
• We are unable to define who will get breast cancer. Patty assumed all her life that she would get it because of her family history. And though she did get cancer, testing for changes in the genes that we know are responsible for breast cancer in many families did not reveal a change in Patty. (We were surprised with this result because of her family history, and her ancestryalterations in the common breast cancer genes occur more frequently in people of Ashkenazi Jewish ancestry.)

These shortcomings are not for want of looking for answers. Thousands of brilliant, dedicated people around the world have spent their entire careers trying to answer each of these questions. And they have made real progress. But we have a long way to go. This underscores the need for continued support for research in basic cancer biology and breast cancer treatment. It is only through this work that we will be able to resolve these questions and change the outlook for Patty's children and grandchildren.