Cancer Survivorship Program at the Cancer Center

Frequently Asked Questions About Pediatric Cancer Survivorship

Who is considered a survivor?

There are many ways to define a survivor of pediatric cancer. Some consider survivors to be anyone from the day of diagnosis of cancer; others consider anyone who has completed all therapy and is free of any signs of disease. Our Cancer Survivorship Program has agreed to focus on survivors who are at least five years from diagnosis and at least two years from the completion of all pediatric cancer therapy.

Who may use our pediatric cancer survivorship services?

Anyone who was treated in childhood or adolescence for cancer and is now at least five years from diagnosis and at least two years from the completion of all pediatric cancer therapy can use our clinic. Some patients may come to us sooner if they are no longer at great risk for recurrence of their original disease. Patients who have graduated to yearly appointments with an oncologist are likely to benefit from a visit to our program and should ask for more information about our clinic. We are available for a one-time consultation or for visits on a regular basis. Visits are made with either our weekly General Cancer Survivorship Clinic or our once monthly Multidisciplinary Cancer Survivorship Clinic.

Even if you may not be quite ready to come to the clinic, our team is available at any time to anyone who has specific questions about late effects or is interested in knowing more about survivorship.

What is the Multidisciplinary Cancer Survivorship Clinic? Do I need this service?

Once a month, our Cancer Survivorship Program offers a specialized clinic for survivors with more complex long-term medical needs. Our Multidisciplinary Survivorship Clinic provides same-day, same-clinic access to oncology follow-up as well as to physicians and nurse practitioners from endocrinology, pulmonology and cardiology. A nutritionist and psychologist are also part of the team. All of these providers have expertise in the long-term health issues that some survivors face. If you currently see one or more of these specialists for your care or if you are at high risk for certain late effects because of the therapy that you received, you would be a good candidate for this clinic. To learn more about our Multidisciplinary Clinic, call Claire Carlson at 215-590-0432.

What happens before and on the day of my visit?

Before a visit, we review all of your patient treatment records and construct a summary of treatment from diagnosis to the present. We use this information to develop a list of potential late effects that you may be at risk for based on your treatment exposures. Using long-term follow-up guidelines from Children's Oncology Group, we develop a plan for routine health screening and management of actual or potential late effects of therapy.

On the day of your visit, you are seen by a pediatric oncologist or nurse practitioner who specializes in the care of childhood cancer survivors. You will have a complete physical exam and any required laboratory or diagnostic testing. The team will review any potential long-term effects of your cancer and then provide guidance on ways to improve your quality of life and future health. A psychologist is also available for consultation at every visit. If you are coming to a Multidisciplinary Survivorship Clinic, you will be seen by additional specialists as needed.

Will my primary oncologist refer me to the Cancer Survivorship Program?

Some primary oncologists will refer their patients to our program. However, you do not need to wait to be referred to our program. All eligible survivors who are coming to yearly appointments with their primary oncologist should ask whether a visit to the Survivorship Program is appropriate. We are available for both one-time consultation or regular annual visits.

If I come to the Survivorship Clinic, will I still see my primary oncologist on that day?

When you come to the Cancer Survivorship Clinic, a different team of physicians and nurse practitioners will care for you. Your visit will not be with your primary oncologist. However, we are happy to let them know that you are seeing us so that they can say hello to you when you are here. We also make sure that they receive a copy of the visit letter so that they know how you are doing from year to year.

Does the Cancer Survivorship team work with my primary care provider?

Working with your primary care physician is a very important part of the services that we offer in the Cancer Survivorship Program. We think our program provides the perfect partnership to the care given by your primary caregiver in the community. After a visit in our clinic, we will send a letter to your primary care physician, summarizing your history and providing guidance for follow-up care.

I don't have any long-term problems from my cancer therapy. Do I really have to come to the Survivorship Clinic?

We know that many survivors are doing very well and have few, if any, medical problems related to their cancer therapy. Although there may not be any late effects at this time, it is important for every cancer survivor to know about their treatment and to understand how that treatment may have the potential for long-term complications. Most survivors who see a family practitioner, internist or pediatrician regularly will still benefit from our services and should have at least yearly contact with a specialist who understands their medical history and their long-term needs. For some patients, there may be a point in time when you do not need the level of care provided in our Survivorship clinic. We will work with you to determine what is the best plan for your follow-up care.   

Can survivors who were not treated at the Cancer Center at CHOP still be seen in the Survivorship Clinic?

Yes, anyone treated for cancer in childhood or adolescence can be seen. In order for us to provide a clinical visit that is useful to you, medical records from the treating institution will need to be sent to us before you come. We can help you to obtain these records before the visit if necessary.

How do I make an appointment with the Cancer Survivorship Program?

To make an appointment with the Cancer Survivorship Program, call 215-590-3025. Be sure to identify yourself as a long-term survivor and ask for an appointment with the Late Effects team. Our team sees patients on Wednesdays, in the morning and the afternoon. If you have been to our clinic before and know what testing is needed with your visit, you can ask the schedulers to arrange your testing at the time of the call. If you are not sure what testing you need or if it is your first visit, do not worry. Our team reviews every patient's chart before the visit and we will let you know what blood work and other testing is needed. We will schedule that testing for you whenever possible.

For specific questions about a scheduled visit in the General Cancer Survivorship Clinic, call Maureen Reilly at 267-426-0210. To schedule an appointment with the Multidisciplinary Cancer Survivorship Clinic, call Claire Carlson at 215-590-0432.

Will insurance cover a visit to the Cancer Survivorship Program?

A visit to our clinic is a medical visit and is often covered, just as a visit to an oncologist or primary care physician would be. However, coverage varies depending on the insurance company. Be sure to check with the insurance company before making an appointment. You can also direct your questions about insurance coverage and visit referrals to the Oncology division's insurance specialist, Kathy Barbone, at 215-590-4184.

Who can participate in research?

There are many opportunities to participate in research studies on the late effects of therapy. A research nurse is available during clinic visits to discuss eligibility for participation in a variety of studies taking place at CHOP.

What if I have a question or concern that is not answered here

Our team is available at any time. If you have questions, comments or concerns, feel free to call one of our clinic nurses. They will make sure that you are directed to the correct resource.

 

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