You Survived Cancer…Now What?

By Alice Lesch Kelly
Reviewed by John D. Hainsworth, MD, and Roy S. Weiner, MD

Seven years ago, when I completed my breast cancer treatment—surgery, three months of chemo and six weeks of radiation—my radiation oncologist shook my hand and wished me luck. While I was relieved to have my treatment behind me, leaving my cancer center triggered feelings of vulnerability. I felt that as long as I was under my oncologist’s care, I was protected from a recurrence. I later learned this is a fairly common reaction among cancer survivors.

Fortunately, survivors need not worry. Armed with the right information, we can still get excellent follow-up care—even after we stop seeing our oncologists. That’s good news, because there’s a looming shortage of oncologists in the U.S. By 2020, the demand for oncology services will increase by 48%, but the number of oncologists may fall by as many as 3,800, according to a study published in the Journal of Clinical Oncology. “The pinch is beginning to be felt,” says Lillian Shockney, RN, BS, MAS, administrative director and a certified patient navigator at the Johns Hopkins Breast Center in Baltimore. In light of this, primary care physicians (PCPs) and other noncancer specialists will increasingly be charged with caring for survivors, whose numbers are expected to swell from 12 million today to 18 million in 2020, according to the American Cancer Society (ACS).

Whether and when you transition from your oncologist back to your PCP depends on several factors, including the type and stage of your cancer, your treatment, your risk of recurrence, the potential for future health problems related to your cancer and the type of medical surveillance you’ll need. For example, if you had advanced-stage cancer or a rare type of cancer, you’ll be more likely to stay with your oncologist. But if your cancer was caught very early and you require minimal follow-up, you’ll probably do just fine with a PCP.

The key to a smooth transition is partnering with your healthcare providers to stay on top of your health. Take these steps to help your providers put a monitoring plan in place—and feel at ease at checkups.

  1. Talk with your oncologist about your concerns.
    If you’re feeling nervous about transitioning back to a PCP, ask your oncologist for reassurance that it’s the right choice for you. Ask for advice on whether you should stick with your pre-cancer PCP or see someone who has more experience managing post-cancer care. “If you aren’t satisfied with your PCP, try to find somebody else,” advises Hester Hill Schnipper, LICSW, chief of oncology social work at Beth Israel Deaconess Medical Center in Boston.
  2. Ask your oncologist for a treatment summary.
    Don’t count on remembering the names of your chemo drugs or the details of your radiology treatment. Instead, ask your oncologist or hospital for a written summary of your treatment (including cancer type and stage, pathology details, and the names and dosages of all medications and radiation you received). Make several copies of it; keep one for yourself and give one to your PCP. Knowing these details allows your PCP to watch for side effects such as neuropathy, low bone density, and other concerns that can surface long after treatment has ended.
  3. Share your treatment summary with specialists and other healthcare providers.
    Even years later, your cancer experience may affect your risk or treatment of other health conditions, so be sure to have your summary in hand when you see new providers. For example, any specialist who oversees your heart health should know whether you received the chemo drug doxorubicin (including your total dosage), because it can damage heart tissue. Even your dentist should be in the loop, because some cancer drugs can contribute to tooth decay and gum disease.
  4. Ask your oncologist for a detailed follow-up plan.
    A written plan should include a schedule for checkups, blood work, scans and other tests. Your plan can also include answers to questions that may arise, such as: What kinds of symptoms should you and your PCP watch for? What can you do to prevent health problems that are more likely to occur in people who have survived your kind of cancer? Under what circumstances should you call your oncologist? What steps should you take if a certain test shows an unexpected result?
  5. Make it easy for your providers to communicate.
    Round up phone numbers and email addresses for everyone on your oncology team (including radiologists and surgeons) in case questions arise in the future. It’s hard to believe, but as time passes, the details of your treatment—which are probably fresh in your mind right now—will begin to fade from your memory.
Published March 2014

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