I didn’t really like this surgeon very much. She was so young and soft spoken.
Many people say that being diagnosed with cancer is scary. I just don’t think that word does the moment justice. I couldn’t organize my thoughts or really decide what to do next. My obstetrician sent me for a mammogram when I first found a lump. When she called me back on Friday (of course), I found myself asking her to define things in a language I didn’t speak.
After a career in journalism, I was used to asking questions and knew how do to so rather well. But how do you ask questions about something you know nothing about? It reminded me of my first day at a large newspaper where I was to accompany another reporter to interview a world- renowned architect who had designed the new city hall. I planned to listen and learn. That was before this reporter, who I hope had this done to him one day, turned to me and said, “Why don’t you start.”
I didn’t have the words to ask the doctor what to do next and at least when I was talking about architecture, my life didn’t depend on what I did or did not know.
So, when she said, “your mammogram is highly suspicious,” I asked her what that meant. She replied, “You probably have breast cancer.”
“And now what?” I recall asking her.
“You need to go to a surgeon and an oncologist,” she said. “I recommend xxxxx and xxxxx.”
To my husband I said, “Get me to a bookstore.” As a journalist, my instinct was to research breast cancer while waiting for the appointment I made with the surgeon.
This was 1986 and the only book I could find was “Why Me? What Every Woman With Breast Cancer Should Know to Save Her Life,” by Rose Kushner, which I read in one sitting and then went through again with a marker to make a list of questions. I was finally getting the lingo, and Rose had turned me into an activist in one sitting. I laugh now when I think how nasty I must have sounded while giving my surgeon my list of demands about how the tumor be tested only to have her say, “We already do all of that.”
“Oh,” I said, sounding a lot like Gilda Radner on Saturday Night Live.
I didn’t really like this surgeon very much. She was so young and soft spoken. I found out later that she was only a year older than I was, and that I was in her first 10 patients in her new practice. (She won’t tell me if I was the first.)
“I want a second opinion,” I demanded.
“Sure,” she said in her soft voice. “Let me recommend a few and you can get one or more second opinions. Just tell me where to send the film.”
When I met the second surgeon, also a woman, I liked her a lot. She was loud, like me, and I just felt like we would be a better match. I asked her to take me on as a patient. She refused.
“If I thought there was any reason you would not get the latest and best treatment, I would take you immediately,” she said. “But I know Dr. x and she is fabulous, and you couldn’t be in better hands.”
“But she is so young,” I whined.
“Think of that as an advantage,” she said. “She has all the latest techniques.“
I was sold. I went back to Dr. X and am glad I did. She came to be a wonderful friend over the years and when I said she needed a support group in her office, she said, “OK, let’s do that. I know a good therapist to run it.”
But most of all, she listened to me. On the day of my surgery, literally her last visit with me before I was wheeled to the OR for a lumpectomy, I said to her, “If it’s worse than you thought, don’t take my breast off without waking me up.” She promised she wouldn’t.
And she didn’t. I woke up in recovery with her over me saying, “Well I didn’t do a mastectomy, but I need to. Your tumor has roots that extend beyond where I could get clear margins.”
How many surgeons would have honored that request, knowing that going under again in two days was not an optimal situation?
We laughed about it years later and she said, “I learned from you to always discuss what would happen if it was worse than we expected,” she said. “You taught me a lot.”
This was at dinner, one of many we had while setting up a free clinic for women without insurance that she ran for a number of years. I served as chair of the board and a number of her other patients, most from the support group she started, served in other roles. It began in in 1991, and is still going strong today.
All of this points to the fact that you may not know what is best for you at diagnosis. But I also learned from interviewing women for my book, “The Breast Cancer Companion,” that a doctor that one woman raves about may infuriate another woman in the same situation.
The choice of surgeon, oncologist and radiation oncologist are up to you, and if you want a second opinion and the doctor you are talking with has any problem with that, fire him or her. I wasn’t surprised to read in the Annals of Surgical Oncology that a review by a tumor board at an NCI-designated cancer center changed the diagnosis for 43 percent of patients. Think about it.