Taking Charge of Follow-Up Care

doctor visit
Every cancer patient looks forward to the day when the doctor says that treatment is finally complete. At that point, the end of cancer treatment signals the beginning of a new journey: survivorship.

Every cancer patient looks forward to the day when the doctor says that treatment is finally complete. At that point, the end of cancer treatment signals the beginning of a new journey: survivorship.

Although you and your doctor may talk about the risk of a cancer recurrence down the road, it is also important to talk about "late effects" of treatment -- side effects that may not become apparent until years later -- and your overall plan for follow-up visits and cancer prevention.

Write it Down

Health care professionals now recognize that they need to better prepare patients for this next phase of life. Yet patients may need to take the reins in this area until formal survivorship plans are developed. This means they will need to schedule appointments for follow-up testing; communicate appropriate information to each of their doctors; and engage in healthy lifestyle practices.

Pediatric oncologists are leading the way in survivorship initiatives, thanks to the long-term survival of children with cancer. While the experts work out the details, make sure you document the following to start building your own survivorship plan:

  • What type of cancer you had
  • The names of the treatments you received
  • The names of the drugs you took and/or were administered
  • What follow-up tests and appointments are required and at what intervals

"If you don’t know the answers, call your physicians and get them," urges Lidia Schapira, M.D., medical oncologist at the Gillette Center for Breast Cancer at Massachusetts General Hospital Cancer Center in Boston and assistant professor of medicine at Harvard Medical School. The more details you can get, the better, she says.

Create Your Own Medical Record

Electronic medical records are still not widely used or required by the federal government, but you can improvise by creating your own. In addition to documenting the basics, you may want to record more detail, including:

  • Your cancer diagnosis; treatment dates; drug names and doses, including chemotherapy; surgeries performed; and, if you received radiation, the specific areas of the body that were radiated, including organs in the path of exposure.
  • What doctor to see -- and when -- for future tests and check-ups
  • Contact information for all physicians involved in your treatment -- oncologists, surgeons, radiation therapists, and other specialists, as well as your primary care physician
  • Facilities where X-rays, MRIs, CAT scans, and other studies were performed and where these records are stored
  • Results of key lab tests and/or diagnostic studies

You may also choose to include:

  • Other relevant data about your medical history
  • Your blood type
  • Current medications

To protect your privacy, do not record your Social Security number on any of the documents.

Collect this information on an ongoing basis. Near the end of your treatment, ask the doctor or nurse practitioner who is handling your care if he or she would review your "medical record" and notes for accuracy.

You may want to:

  • Print out copies of the documents or photocopy your handwritten documents
  • Download the electronic data to a flash drive or CD and have the handwritten documents scanned and save them to the same media
  • Store the flash drive or CD in a safe location
  • Give copies to trusted family members or friends in case you are hospitalized
  • Take the flash drive, CD, or printouts with you to all doctors' appointments
  • Take documentation with you when you travel – particularly overseas

Just as patients with allergies or certain diseases wear bracelets to alert medical personnel, your record provides valuable details to better manage your medical care, prevent complications, or save your life.

For example, patients who once received the chemotherapy drug bleomycin may have developed diminished lung capacity, which would need to be communicated to an anesthesiologist before any future surgery. And because the drug doxorubicin can affect cardiac function, former cancer patients need to relay this information to both their primary care doctor and specialists.

Make a Plan

Because cancer treatment usually involves multiple medical professionals, people may be confused about whom to see for follow-up care. Do they return to their primary care physician or schedule visits with specialists or their oncologist?

Start by asking your oncologist if you should schedule follow-up appointments with him or her and, if so, for how many months or years. Ask if and when your care should be turned over to your primary care physician or nurse practitioner.

If your care is assigned to your primary care professional, provide him or her with the medical record you created, as described above.

Professional associations including the Institute of Medicine and the American Society of Clinical Oncology, as well as the LIVESTRONG Foundation, are working to create formal guidance to physicians on creating survivorship plans.

The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) have provided information to doctors about surveillance following completion of therapy, but NCCN is now expanding many of the NCCN Guidelines to include continuing and late effects of various treatments. The NCCN Guidelines for Survivorship were released in March 2013. These guidelines were written for doctors but may be helpful to cancer patients and survivors, as well.

Until formal survivorship plans are widely adopted, people who arm themselves with information and documentation about their care will be in a good position to make a smooth transition from cancer patient to survivor.