Blog | Thursday, August 15, 2013

Not every oncologist can or should deliver survivorship care

I wish I had known earlier that not all oncologists, internist or primary care providers can or should provide survivorship care.

The first oncologist to provide me with survivorship care would feel the lymph nodes in my neck, ask me how I was feeling (“Fine.”) and then hold forth for a half hour about the wrong-headedness of federal research priorities, knowing that I worked for the National Cancer Institute.

Another oncologist I asked to provide me with comprehensive survivorship care balked when I asked him to feel the lymph nodes in my neck. He was an oncological gynecologist and my neck was “not (his) body part.” Comprehensive? Ahem.

Another oncologist to whom I was referred for survivorship care took one look at me when I showed up for a routine visit and exclaimed, “What are you doing here? I have sick people to take care of! Don’t worry, I won’t charge you for this visit.”

I encountered the first doctor early in the development of cancer survivorship as a focal area for oncologists and primary care providers. The second and third were oncologists in major urban comprehensive cancer centers and were in charge of my survivorship care for extended periods in the late ‘90s and early 2000s.

What’s up with that? Why was I so willing to be cared for by clinicians who I knew were so poorly matched to the challenges of guiding me as my care grew increasingly complex with each new cancer diagnosis? And why was it so hard to find someone who was actually willing to help me meet those challenges?  It’s not as though I didn’t have a clue what I needed, and it’s not as though survivorship care remained an unknown, unimportant part of the job of most oncologists and some primary care clinicians.

We are not the only ones who must be convinced that we have unique health concerns following the active treatment of our cancer. Clinicians must also believe that special care for us is important, and they have to learn how to provide that care. Then they have to take the time to listen to us and help us get the tests we need, find solutions for the sometimes intractable lingering physical, psychological and social symptoms of the disease and treatment, and keep a sharp eye out for late effects and recurrences. This is no small order, especially when time is short and insurance reimbursement can be tricky.

Here’s one source of the problem: Recent surveys published in the Journal of General Internal Medicine asked primary care clinicians and oncologists who should monitor and care for cancer patients once they finish active treatment. Almost two-thirds of oncologists had little confidence in the skills of primary care clinicians to order appropriate tests and care for the late effects of breast cancer treatment. And many primary care clinicians agreed with the oncologists: only 40% of primary care clinicians expressed confidence in their own knowledge about testing for recurrence and late effects. Further, in the survey cited above, although oncologists said that they provided treatment summaries or care plans to primary care clinicians a majority of the time, primary care clinicians reported receiving  them a minority of the time.

And so who is it, again, who will take responsibility for our survivorship care?

It would be wonderful if each of our oncologists sat down with us to complete a comprehensive survivorship care plan at the end of our active treatment. And it would be even better that they tell us candidly if they are unwilling or unable to fulfill that plan. If they are not, helping us find someone who will and then formally making the hand-off to them would make a big difference.

In spite of a heavy investment of effort by patient advocacy, professional and government groups with a stake in survivorship care, I don’t see this happening soon, especially with the reorganization of health care currently taking place and the workforce constraints mentioned above.

This means that for many of us, a substantial part of the burden of finding good survivorship care may rest with us and those who love us. If you are in this situation, take a look at this link (here for survivors of pediatric cancers) to see the full breadth and depth of what comprehensive survivorship care looks like. You need a template to make sure you and your new doctor are on the same wavelength: good survivorship care is not just periodic testing and the ritual palpation of lymph nodes.

If asking for a referral where you were treated hasn’t worked or you are unsatisfied with your current survivorship care, take a careful trip through the LiveStrong website where you will find good guidance about where to look for one. Similarly, cancer centers supported by the National Cancer Institute – large and small centers (here for pediatric survivors) – have survivorship programs that might offer you a choice of physicians who will provide comprehensive survivorship care.

Curiously, none of my subsequent cancers were detected by examining my lymph nodes. Some have been found via routine screenings based on survivorship guidelines, the others only through the vigilance of a unique physician who specializes in follow-up care for those treated for pediatric cancers.

It’s a sad surprise to realize that even if you can overcome your fear of recurrence or general resistance to even more contact with medical care, getting yourself the ongoing survivorship care you need (and researchers and experts agree that you do), may not necessarily be that easy.

I wish I’d known earlier that I was going to need to work at getting good survivorship care. And, even more so, I wish I didn’t have to.