If I Knew Then What I Know Now …
by Julie K. Silver, MD
One evening at a cancer survivors’ conference in which I gave a talk, a woman came up to me and told me a story I’ll never forget. She said that she had been diagnosed with breast cancer a year earlier. All during treatment she counted the days until she was finished. Excited about the end of treatment, she made herself a pink graduation cap and gown for her last chemotherapy appointment. As she handed me the picture of her “chemo graduation,” she told me that the happiness she felt when the photo was taken had dimmed over time because she still didn’t feel very well. Then she asked me a question I hear a lot: “Why do I feel so bad so many months later? I thought I was done and would heal right away!”
As a doctor of physical medicine and rehabilitation, my work is focused on helping cancer survivors heal as well as possible from the side effects of treatment. I tell my patients that it might take many months or even several years to heal optimally. It is true that despite an intense desire to “get back to normal,” people often end up having to accept a “new normal.” I frequently tell people, however, not to accept a new normal too early – instead try and heal optimally first.
When I interviewed cancer survivors for my new book with the American Cancer Society, What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope, I asked them what they know now that they wish they had known from the start.
Pam, also a breast cancer survivor, explained, “My doctor told me that it would be a minimum of two years before my life would start to turn around. I just didn’t believe her.” However, Pam’s oncologist was right. Though Pam’s doctor told her from the start what to expect, she didn’t really believe it until she experienced it for herself. Sometimes it’s hard to accept what your doctor may be telling you, and other times there is just so much information that it’s hard to take it all in.
Despite an intense desire to “get back to normal,” people often end up having to accept a “new normal.”
Doctors can’t always predict how well someone will tolerate treatment. Mary, an attorney who went through breast cancer treatment, wrote, “I wish I had known that I was going to be physically well throughout my surgery, chemotherapy, and radiation.” Mary worried about how she was going to manage her “busy and complicated life” during treatment, and it turned out that it wasn’t nearly as bad as she thought. Of course, this is often more the exception than the rule. Mary credits “taking everything off my plate so that I could completely devote my energy toward recovery” as the reason that she felt much better than she expected.
David, a journeyman sheet metal worker (also a breast cancer survivor), had the opposite experience. “I wish I had known that chemo treatments were cumulative in the body and that recovery from each successive treatment would be more difficult,” he responded.
Another answer survivors gave quite often is that they wish they had known they were going to be around many years after their cancer diagnosis. They wrote about how they would have worried less and enjoyed the intervening years more. Janet, an elementary school teacher who was diagnosed in 1993 with colon cancer, shared, “I learned not to listen to survival statistics.” Danielle, a melanoma survivor wrote, “I wish I had known that I would be a survivor and had not wasted so much time in self-pity.”
Of course, knowing what the future holds is impossible, and it’s hard not to worry. Still, it was heartening to hear from so many survivors how well they are doing many years after the initial diagnosis. One strong message that people who had been through cancer wanted those who were newly diagnosed to know is that there is hope. Pearl, a young breast cancer survivor in Glasgow, Scotland, summed it up this way, “It would have helped me to know that there was a good, but different, life after all the treatment – that I would probably never feel so much heartbreak as I did, but that it would ease in time.”
“There is always hope ... It means something different for each person.”
Certainly, survivors may feel more or less hopeful at different times. There’s plenty of bad news that comes with the initial diagnosis and beyond. However, one woman who had a very poor prognosis when she was diagnosed with colon cancer in 1998 wrote, “There is always hope, and that hope is sometimes changing. It means something different for each person in any given situation. When one doctor tells you there is nothing more that can be done, he is merely saying that he has exhausted his expertise. The next oncologist may have more up his sleeve. Hope may come in the second, third, or fourth opinion, or totally evolve in a different form.”
My friend and colleague, Dr. David Johnson, who is the director of the division of Hematology and Oncology at Vanderbilt-Ingram Cancer Center in Nashville, TN, put it this way, “Hope is what you feel when you know your doctors and other care partners are doing everything that is possible and reasonable to help you get well. Hope stems from that support you get from your family and friends.”
What many survivors said they learned on their journeys and felt they would have been better off understanding from the start is this: It may take a long time to heal after treatment. Don’t be surprised if you are alive many years from now. And there is always hope in one form or another.
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Dr. Julie Silver, a physiatrist, is an assistant professor at Harvard Medical School in Boston, MA. She has authored over a dozen books, including her guidebook to recovery from cancer treatment, After Cancer Treatment: Heal Faster, Better, Stronger. Her book, published by the American Cancer Society, What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope, marks her fifth year of survivorship.
This article was originally published in Coping® with Cancer magazine, March/April 2009.