I WISH I HAD KNOWN EARLIER…NOT EVERY ONCOLOGIST CAN OR SHOULD DELIVER SURVIVORSHIP CARE

By Jessie Gruman

April 2, 2014

I wish I’d known earlier that not all oncologists, internists or primary care clinicians 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 at the National Institutes of Health.

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 that first doctor early in the development of cancer survivorship as a focus for oncologists and primary care providers. The second and third were oncologists in major comprehensive cancer centers and were in charge of my survivorship care for extended periods in the late ’90s/early 2000s.

What’s up with that? Why was I so willing to be cared for by clinicians who 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 many 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 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 treat the late effects of breast cancer treatment. And many primary care clinicians agreed with the oncologists: Only 40 percent 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. It would be even better that they tell us candidly if they are unwilling or unable to work with us to fulfill that plan. If they are either, helping us find someone who is 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, a substantial part of the burden of finding good survivorship care may rest with us and our family caregivers. If you are in this situation, take a look at the survivorship guidelines for patients from the National Comprehensive Cancer Network (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 it. Similarly, cancer centers supported by the National Cancer Institute — large and small (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 more cancer-related health care, getting yourself the survivorship care that researchers and experts agree you need may not 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, I wish I didn’t have to.

This post is the third in a series about lessons I have learned over the years about the unique needs and responsibilities of those who have been diagnosed and treated for cancer. The series explores what it takes to find the right health care and make the most of it as part of our effort to live as well and as long as we can.

If you have been diagnosed and treated for cancer, I invite you to join me in this summer project. Interested in writing a blog for this series? Get in touch. Have a response to mine or others’ insights? Please comment.

Whether you get itchy when someone calls you a “cancer survivor” or you enjoy the extra love that comes with the term, join me in sharing with others the hard-won lessons you have learned over the years about what it takes to find the right health care and make the most of it as part of your effort to live as well and as long as you can:

• Part 1: What I Wish I’d Known Earlier about Cancer Survivorship
• Part 2: I Wish I Had Known Earlier…How Fear Can Get in the Way of Cancer Survivorship Care
• Part 3: I Wish I Had Known Earlier…Not Every Oncologist Can or Should Deliver Survivorship Care
• Part 4: I Wish I Had Known Earlier…For Many of Us, Symptoms and Late Effects Accumulate Rather Than Fade Over Time
• Part 5: I Wish I Had Known Earlier…To Cast a Cool Eye on Prognostic and Risk Statistics
• Part 6: I Wish I’d Known Earlier…I Still Need a Primary Care Provider Since Most Headaches Aren’t Brain Tumors
• Part 7: I Wish I’d Known Earlier…Survivorship Care Is a Mutual Enterprise
• Part 8: I Wish I’d Known Earlier…Each New Diagnosis Has Unique Demands
• Full series and posts by other cancer survivors

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.