Five Years, Follow Ups, For Life
It is that time of year again for me, twice a year, every six months, follow ups with doctors as a cancer survivor. Many get confused when they hear that I see doctors for this reason, when it has been over 36 years that I have been in remission. And honestly, once I hit my five-year mark, and my oncologist declared I no longer needed to be seen, no surprise, I was more than willing and happy to move on with my life. And for eighteen years, it worked, and then it didn’t. You can dig in to “Paul’s Heart” for the many reasons why this was a mistake to move on after oncology. I want to start at the beginning.
Why primary care remains essential after oncology follow-up ends?
Being released from an oncologist after five years of remission is an important milestone, but it does NOT mean that medical follow-up is no longer necessary. It usually means that the risk of recurrence of the cancer has fallen enough that routine care can be transferred to your primary care provider, sometimes working with a cancer survivorship clinic or the oncology team if or when needed. It is frustrating to me that after all these years, oncologists still do not either mention or emphasize that cancer survivorship is lifelong, and most survivors should have continuing follow-ups for their general health, and “possible” recurrence (not definite or likely), new cancers, and any possible delayed side effects from treatments.
While I and many cancer survivors may mark their calendars with the date, the significance of five years being a milestone is not just as an expiration date, but varies considerably according to the type and stage of the cancer a patient goes through. Some cancers rarely recur after that point while others can return many years later. More importantly, chemotherapy, radiation therapy, and surgery may cause health problems that do not appear until years or even decades after treatment. These are what you have often heard me refer to as “late side effects”.
It is your oncologist’s responsibility to make sure that your primary care provider (PCP) know the exact cancer diagnosis and stage you had, the chemo drugs received including cumulative doses when available, locations and doses of radiation, surgeries performed and any organs removed, and this is important, any known or possible treatment complications, and the recommended schedule for future follow-ups, tests and screenings, including baseline measurements for future comparisons.
This information should be written up as a treatment summary and survivorship care plan. This not only tells your PCP what needs to be done, but any future clinicians that you come across in your care, the follow-up care needed, what late effects may occur and what warning signs require attention.
So what does your PCP oversee after the five year mark?
Your PCP becomes the main contact, the main coordinator, the facilitator of your care for the rest of your life. Though unlikely after five years, your PCP will monitor for any recurrence. The PCP needs to know what symptoms, physical exams, and lab studies or imaging tests are appropriate for the original cancer. Routine testsing should be based on the particular diagnosis rather than performed indiscriminately.
Your PCP should screen for additional cancers as some previous treatments can increase the risk of a second or secondary cancer. Screenings may need to begin earlier than others patients (such as for colon cancer or breast cancer), occur more frequently or include tests that are not normally recommended for someone of the same age without your treatment history.
And as I found out eighteen years after my remission date, the PCP should look for treatment-related late side effects. Depending on the treatment received, these can involved the heart, blood vessels, lungs, thyroid, bones, kidney, nerves, reproductive system, digestive tract, immune system, cognition, or other organs. As I have said before, these things can pop up as early as months, or as late as years or even decades later.
Of course, your PCP will also still manage your ordinary health conditions. You still should have regular physicals to monitor blood pressure, cholesterol, diabetes, vaccinations, infections, weight, bone health and other age-appropriate screenings. This is important because some cancer treatments can raise the risks for cardiovascular, metabolic or bones.
Always put on the back burner or forgotten, is the care the PCP provides for emotional or mental health. The mental trauma from cancer lasts a lifetime. Whether it be fear of recurrence, anxiety, depression, fatigue, changes in identity and “scanxiety” continue long after treatment ends. It is important to understand, this is not the same or to be confused with “moving on.” Your follow up care has nothing to do with “moving on.”
Look at it this way, leaving your oncologist should be viewed as a transition, not a discharge or dismissal from health surveillence. Yes, celebrate hitting the five-year mark! That is a big deal. But the goal now changes from concentrating on eliminating cancer to protecting your long-term health and quality of life. A cancer survivor should never be treated as though their cancer history became irrelevant after the five year mark. That history remains as important a part of the person’s medical identity, and will inform and support your care for the rest of your life
