Cancer Survivor: The Transition from Oncology to Primary Care

I have a genetic autoimmune disorder known as mixed connective tissue disease  and I was very lucky to have had some great doctors working with me when I went through leiomyosarcoma. My father was equally lucky to have some top-notch physicians and oncologists during his cancer war also. After it was all over, however, I no longer needed  to see my oncologist on a regular basis, and there was no recommended “survivorship” plan or support group to help me figure out what to do next. 

Like most cancer survivors I went back to my regular doctor for follow-ups  and treatment of my autoimmune disease, but I felt like something was missing. Although I believe in my heart I have one of the best doctor s ever, she simply wasn’t able to support me emotionally or to help me with the long-term side effects of  cancer treatment effectively in a way that felt useful to me and I often felt like an experiment gone wrong.  

It is not unusual, after cancer treatments are complete, for most patients to be transferred back from their oncologists back to their primary care physicians. Most cancer survivors will agree that their primary care physicians are not always prepared or equipped for dealing with them as cancer survivors simply because that is not part of their medical training.

Study Shows Doctors Need More Training in Survivorship

A recent study found that many doctors, particularly primary care doctors, don’t feel very confident in their ability to take care of cancer survivors. Oncologists, too, believe that primary care physicians aren’t adequately educated for the task. Regular doctors, for example, tend to “over-test” for cancer recurrence because they’re not sure how much is too much. They may also not be fully prepared to deal with post-treatment concerns like lasting side effects,  psychological support, and managing other related diseases and conditions.

“More training and education of cancer survivorship is critical for the primary care physician and the oncologist,” says Julia Rowland, Ph.D., director of the Office of Cancer Survivorship and the National Cancer Institute.

Suggestions for a Smooth Transition

What can you do to help make the transition from your cancer-care team to your regular doctor go more smoothly? The authors of the study suggest the following:

• Meet with your oncologist after treatments are over and ask for a summary of the care you received, plus an outline of recommended follow-up care that you can then take to your regular doctor.
• Ask about what aspects of your care the oncologist will take care of, and what aspects your regular doctor should take care of.

In addition, here are some other things you can do—from my experience!

• If something feels “off,” ask about it. You know your body better than anyone.
• Ask your oncologist or doctor about important post-treatment care like support groups, counseling, massage, acupuncture, and other types of therapies. He or she may know about reputable programs that offer services for free or for reduced rates to cancer survivors.
• If your regular doctor isn’t communicating well with you, consider transferring to one who will.
• Check with a dietician or nutritionist to get on top of your post-treatment diet.
• Get into a regular exercise program—one you enjoy doing.
• Take responsibility for your own care. Most of us feel depressed, overwhelmed and confused after treatments are over. Get the help and the support you need to make it through this difficult time by attending a support group, seeing a life coach who specializes in cancer survivorship, and by surrounding yourself with other survivors who understand.

Did you find it difficult to talk to your regular doctor after cancer treatments? Please share your story.

Source: Georgetown University Medical Center. “Doctors differ in how best to care for America’s 12 million cancer survivors.” ScienceDaily, 25 Jul. 2011. Web. 26 Sep. 2011.