Survivorship Care Plan

Some patients can return to their transplant center for long-term follow-up care. Others are referred back to their local healthcare provider for follow-up care. Most primary care physicians, community oncologists, and hematologists have received little or no training in the care of transplant survivors. Thus, you will need a good long-term follow-up plan prepared by your transplant team to enable your local doctors to provide you with appropriate follow-up care. This is sometimes called a Survivorship Care Plan.

What Should Be in the Plan?

Ideally, your long-term follow-up plan should include the following information:

• tests and clinical evaluations that should be done periodically to detect possible problems, and their frequency
• whom your doctor should contact for questions and instructions
• the date, dosage, and type of chemotherapy you received, including any you received prior to your referral to the transplant center
• the date, type and site of any radiation you received, including any you received prior your referral to the transplant center
• other medications you received while being treated for your disease that have potential long-term health effects
• any serious infections you developed during transplant and how they were treated
• other major complications that could have long-term effects
•  whether you developed graft-versus-host disease (GVHD), how it was treated, and for how long it was treated
• if you relapsed after transplant, how it was treated
• your current medications and allergies
• your vaccination history
• potential mental health effects of therapies you received

Make several copies of your long-term follow-up plan, and be sure to give it to each of your doctors, including dentists. Since you have a complicated medical history, you will need to make sure that all your doctors know about any medical issues that can arise after transplant.

The symptoms of some transplant-related complications, such as graft-versus-host disease, can resemble other disorders doctors often see. Without knowledge of your medical background, your local doctor may miss a problem or diagnose it incorrectly and begin inappropriate treatment.

Transplant survivors often develop transplant-related side effects, such as heart problems, at an earlier age than when doctors typically screen for them. Your survivorship care plan will let your local doctors know if you need earlier or more frequent screening.

Next Page: Late and Long-Term Side Effects