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Transitioning care from your primary oncologist to the Survivorship Clinic

What happens when you complete therapy

When you were first diagnosed with cancer, you met many unfamiliar faces. These people gave you your cancer diagnosis, discussed your treatment options, administered your chemotherapy, laughed with you, cried with you, and celebrated with you. Over time, these unfamiliar faces became the faces of those you trusted most with your health. They became a beloved part of your family. In fact, you probably saw them more than most of your family members.

Then you became a childhood cancer survivor – a title you have been fighting for, often for many months or years. Every survivor’s story is unique. Some of you have been cancer-free for many years. Some of you had to face more hurdles and needed additional therapies. No matter what your story is, you can now call yourself a “childhood cancer survivor.”

Since your therapy is now complete, your visits to the oncology clinic have become less frequent — a sign of improved health, and most importantly, being cancer-free. The main purpose of follow-up visits with your primary oncologist is to ensure that you remain cancer-free.

However, it is always an added bonus when you have the opportunity to reunite with your Penn State Children’s Hospital family. “You develop this bond with the team since you are there so frequently during treatment … so when you don’t see them as often, you miss them,” said the mother of a 7-year-old survivor of acute lymphoblastic leukemia.

The first five years following therapy is the time of highest risk for cancer recurrence. As a survivor who is treated at Penn State Children’s Hospital, you will continue to see your primary oncologist routinely until you are at least two years off therapy; albeit with less frequency as you celebrate each additional year of survivorship.

Once you are at least five years from your diagnosis and at least two years off therapy, you are eligible to come to the Penn State Children’s Hospital Childhood Cancer Survivorship Clinic. The mission of the Survivorship Clinic is to educate survivors about the therapy they have received and the late effects for which they are at risk, and monitor for those late effects. For those who are fewer than five years off therapy, this visit replaces just one appointment with your primary oncologist each year. Once you are five years off therapy, care is completely transitioned from your primary oncologist to the Survivorship Clinic.

Reaching the “five years off therapy” mark is an enormous milestone. You are no longer a cancer patient, but instead a survivor who has very minimal risk of cancer recurrence. The focus of your follow-up visits will reflect that. Although the Survivorship Clinic team will continue to ensure you are cancer-free each year, the main focus is providing you with the knowledge and resources to help you be as healthy as possible and to maximize your quality of life.

The thought of transitioning care from your primary oncologist — the person who has been with you on this journey since day one, your beloved family member and familiar face – to a new group of unfamiliar faces can elicit many feelings. “At first, I was skeptical since I had been seen by Dr. Comito for my entire treatment. But I really liked the Survivorship Clinic. The education was very detailed and it put my mind at ease now that I know what to look for,” said a 20-year-old survivor of osteogenic sarcoma.

The mother of a 7-year-old survivor of leukemia discussed how she, her husband, and her son “were apprehensive about transitioning to a new doctor. We fell in love with Dr. Neely and didn’t want to leave him. That’s who we were used to. We worried about how [our son] would react to a new doctor, new team, new clinic. Once we got into the new clinic, the transition was fine. I don’t know what we worried about.”

“Initially, we were a little sad since we were getting away from seeing Dr. Freiberg and the primary team that we had worked with for the past four years,” commented the mother of a 7-year-old survivor of acute lymphoblastic leukemia. “Once we had our appointment, we were very pleased and excited. We found it very helpful and informative and felt a lot more comfortable. It was as if we knew the new team for years.”

When you are eligible for the Survivorship Clinic, your primary oncologist speaks with you about transitioning care. The feelings of anxiety, skepticism, apprehension, and sadness that you likely will feel are normal. Remember how you felt when you first met those unfamiliar faces years ago? These new, unfamiliar faces will soon become those who laugh with you, cry with you, and celebrate with you. They will soon become familiar and one day they may also become your beloved family. Besides, your primary care team members (including your oncologist, nurse, social worker) are always around, available and eager to catch up on all of the important milestones in your life.