Childhood Cancer

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Childhood Cancer Survivors

Comprehensive Follow-Up Clinic Or Survivorship Programs

In the past, survivors of cancer were often on their own after treatment ended. With increasing numbers of long-term survivors, it became apparent that these young adults faced complex medical and psychosocial effects from their years of treatment. Fitzhugh Mullan, MD, co-founder of the National Coalition for Cancer Survivorship, said, “It is as if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and sputter on their own in the belief that we have done all we can” (Mullan, 1984).

Some institutions, realizing the need for long-term services for survivors, started comprehensive programs, now called survivorship programs. There are many health care facilities that have survivorship programs but may have a different title, such as long-term follow-up clinics or comprehensive follow-up clinics. Other institutions have difficulty obtaining support and the financial resources to start and maintain survivorship programs.

For about a year after completing my treatment. I had monthly checkups at the oncology clinic with my oncologist which included blood work and scans (MRI, bone scan, CT, x-rays). After the first year those visits changed to every three months, then every 6 months, until I was about 5 years out from treatment, then just an annual visit. I also had frequent follow-ups with my orthopedic surgeon since all of my surgeries and my surgeon were located at a different hospital from where I received my cancer treatment with my primary oncologist.

The clinic where I received my post-treatment care had a well-established pipeline for patients finishing therapy, so from my perspective the follow-up was fortunately pretty straightforward. An area that was difficult for me was fully understanding why I still had to keep going back to the clinic, albeit less frequently. There was so much build-up to the end of treatment, and being so young, it was hard to wrap my head around why I had to return for follow-ups and frequently after I was “done.” This was especially true around scan days which were very anxiety-inducing.

 

I don’t remember much about the transition because I was only in 1st grade, but we continued to see my doctors fairly regularly after finishing chemo (maybe once a month) for a year, then steadily decreased until it was only once a year as part of a Survivorship Clinic. It was a comprehensive team and it was set up by the hospital, so we did not have to find doctors or ask for referrals.

 

I am impacted both physically and emotionally by late medical effects. I also have a rare blood disease, so it is very difficult. After treatment was complete, I am required to go to survivorship clinic also known as “forever care.” I also have a doctor for every organ in my body to follow up yearly or more often if needed as symptoms present, which unfortunately is more often than I like.

 

We are lucky to have the Survivorship Clinic at CHOP. We keep in touch with the oncologist via email—this relationship is wonderful and extremely helpful as she has gone through the process to be classified as a para-rower, applied for grants to cover her rowing fees, applied for childhood cancer scholarships and struggled with some long-term physical issues. I also send regular updates to her doctor—I am so grateful, and I know her job is impossible. She has had an amazing impact on my daughter’s life.

History of survivorship care

In 1996, the International Society of Pediatric Oncologists developed guidelines for the care of childhood cancer survivors and stressed the importance of psychological support and the education of patients about a healthy lifestyle. They stated, “We advocate the establishment of a specialty clinic oriented to the preventive medical and psychosocial care of long-term survivors . . . The goal is to promote long-term physical, psychosocial, and socioeconomic health and productivity, not merely to maintain an absence of disease or dysfunction.” (Masera, 1996) In 2003, the Institute of Medicine published a book called Childhood Cancer Survivorship: Improving Care and Q uality of Life, which stressed the importance of follow-up programs.

The Children’s Oncology Group (COG) first published follow-up guidelines in 2004 to help survivors and the healthcare providers who treat them. COG guidelines are periodically updated as research and treatment evolve. The most recent COG updates Version 6 were published in 2023. In addition, the American Academy of Pediatrics published guidelines in 2004 for pediatric cancer centers, which stressed the importance of long-term follow-up and described survivorship programs as “An established program designed to provide long-term, multidisciplinary follow-up of successfully treated patients at the original treatment center or by a team of healthcare professionals who are familiar with the potential adverse effects of treatment for childhood cancer” (Corrigan, 2004).

As a result of these recommendations and a growing awareness of the needs of survivors of childhood cancer, some institutions began survivorship clinics using a multidisciplinary team to monitor and support survivors. The nucleus of the team usually includes a nurse coordinator, pediatric oncologist (physician), pediatric nurse practitioner, and sometimes a social worker and/or psychologist. They have a close working relationship with cardiologists, endocrinologists, orthopedic surgeons, and other specialists whose services are needed by some survivors.

What survivorship programs provide

Survivorship programs usually provide a review of treatments received, counseling about potential health risks, and any necessary diagnostic tests such as cardiac evaluations, hormonal studies, psychological evaluations, or testing for learning disabilities. These survivorship clinics not only provide comprehensive care for long-term survivors, but also participate in research projects that track the effectiveness of and late-effects from various clinical trials. In addition, members of the survivorship clinic team act as advocates for survivors with schools, health insurance agencies, and employers. The focus of these programs should be to educate survivors about strategies to maximize their health and well-being.

Finding survivorship clinics or comprehensive follow-up care

Many cancer centers do see long-term survivors, but do not have a survivorship or comprehensive program. Others have excellent survivorship clinics. The first step in finding a survivorship clinic is to ask your pediatric oncology provider for guidance and recommendations for transitioning to an adult program. Then try to find a survivorship program near you (for help, see Resources at the end of the chapter).

To assess the programs nearest to you, you can ask the following questions:

  • How do you provide follow-up for childhood cancer survivors?

  • Who is in charge of the program (doctor, nurse practitioner)?

  • What is your experience in treating the late effects of childhood cancer?

  • Which other professionals are part of the team?

  • What is a typical visit to the follow-up clinic like?

  • What transition services from child to adult care do you provide?

  • Are there support groups or mentoring programs available?

Richard Klausner, MD, former director of the National Cancer Institute, wrote, “We must move away from the ‘take no prisoners’ theory of cancer care and begin considering the sequelae of the treatment we are giving patients. We have to overhaul our programs so that we can follow survivors, ask the questions, and get the answers we need to evaluate the effects of cancer treatment on long-term health.”

Comprehensive follow-up not only improves the health and quality of life for survivors, but also helps physicians evaluate the long-term effects of cancer therapies and develop safer therapies for newly diagnosed children. Advocating for comprehensive follow-up not only helps you as an individual, but helps children diagnosed in the future.

Transition from your treatment facility to survivor follow- up healthcare team

It is sometimes difficult to leave your treating physician and staff for new healthcare providers. Often, the deep trust and strong ties you feel for the staff are hard to give up. However, sometimes continuing to see your treating oncologist for follow-up can create barriers to communication. Many survivors don’t want to disappoint their doctors. They feel that discussing their complex feelings after treatment is not worthy of the doctor’s time. Survivors are frequently reminded how lucky they are to be alive. Often gratitude for their life is the only socially acceptable emotion for survivors. The lack of support from society and the medical community for the difficulties that survivors often face can increase their distress and frustration.

Some survivors feel that to express their resentment or anger for having cancer will make the doctor think they are ungrateful. If you go to the oncology clinic and wait for your appointment with patients who are on treatment, you may feel that your problems are too insignificant to mention. And healthcare providers who treated you are sometimes—perhaps unconsciously—unwilling or unable to elicit all of the late effects information necessary to give good follow-up care. If you go to a specialist knowledgeable in late-effects who was not involved in your treatment, you will not feel like you need to protect your former healthcare provider’s feelings. Such problems do not arise at institutions where treatment teams work closely with late effects specialists, such as cardiologists, endocrinologists, orthopedic surgeons, and other specialists whose services are needed by some survivors. At these locations, survivors get the benefits of seeing both kinds of healthcare providers without having to choose between them.

Creating your own follow-up healthcare team

If you do not live near a comprehensive follow-up clinic, you will need to assemble a team of healthcare providers in your community. The first and most important member of the team is a primary healthcare provider. This could be an internist, pediatrician, nurse practitioner, or women’s health specialist (gynecologist). You may need to interview several healthcare providers to find the best fit.

The most important qualities to look for in your primary healthcare provider are the abilities to care about you, listen to you, work with you to assemble a team, and read the literature about late-effects. The provider should refer you to specialists as needed, organize your healthcare, and function as your medical case manager.

Try to find someone who is willing to work with you to address any health problems that arise and perform thorough checkups to find any problems early. You need someone who listens, provides plenty of time, and is interested in working with you to make a long-term health plan. Healthcare professionals who do not regularly care for survivors of pediatric malignancies are encouraged to consult with a pediatric oncology long-term follow-up center if any questions or concerns arise when reviewing or using these guidelines. If your current healthcare provider doesn’t give you the time you need or stands with one hand on the doorknob while you are asking questions, it may be time to look elsewhere.

Our care team made sure our transition was smooth. We did not have to build our own team. We would see the oncologist every week at first. Then we went to biweekly, and eventually monthly. Four years after treatment, we still see the oncologist every three months, but we also go to the survivor clinic. The survivor clinic checks bloodwork, mental health, and side effects from chemotherapy treatments.

 

Our oncologist and pediatrician really helped inform us about issues we might face and give referrals when we asked for them. They have been great cheerleaders, supportive and helped us advocate well. I definitely think there will always be some ongoing anxiety that we aren’t doing something, or we will miss something that will be crucial later on.

 

Late medical effects are difficult because there is so much unknown. The fear around late effects is a regular issue, as there are so many possibilities to watch for. Maintaining a positive relationship with my current care team and having access to my cancer treatment medical records, as well as staying aware of new research, have been helpful in alleviating the burden.

 

Our daughter’s transition after the end of treatment was more gradual because of her follow-up MRI’s. The first year they were every 3 months, then every 6 months, and now every year. The gradual decrease in visits really helped us transition. I used to get so anxious whenever scan appointments came up, but this has gotten a little easier with time. She also had a lot of rehabilitation appointments after treatment ended. Having that 5-year treatment plan was extremely helpful to know what to expect and when. Our clinic has a great comprehensive follow-up clinic where she has an annual visit.

Be informed about your own medical history and potential risk factors and communicate with your healthcare team when you have concerns or symptoms.

The more informed you are about your own risk profile, the better you can advocate for appropriate care. After you have educated yourself about your history and risks, do not hesitate to be a friendly advocate. Explain (in person, on the phone, or by email) your position and concerns, and state what you would like to have happen.

For example, if you know you are at risk for thickening of the wall of the heart and you are having chest pains, you can ask your primary healthcare provider for a referral to a cardiologist. If you then tell the cardiologist your history, symptoms, and what you are at risk for, you are much more likely to be properly diagnosed. It is well worth it to invest the time to find a caring healthcare provider to whom you go for a visit and say, “I’m having these symptoms,” and allow her/him to investigate and get early treatment. Together you can work toward a healthy life.

Ways to advocate for the best possible medical care:

  • Use a Cancer Treatment Summary (see example of blank Comprehensive Summary of Cancer Treatment form used by the Children’s Oncology Group at (http://www.survivorshipguidelines.org/. Take this form to your oncology team that treated you to fill in and then educate your primary healthcare provider and all specialists about your treatments.

  • Refer to the Children’s Oncology Group’s recommendations for follow-up care and Healthlinks for Patient Education (see Resource list, COG Long-term follow-up guidelines for survivors (Version 6, revised Oct 2023).

  • Keep files containing copies of key x-rays, diagnostic tests, and reports.

  • Keep your healthcare provider updated about any health concerns or symptoms you have.

  • Find a resource person at a survivorship clinic or comprehensive follow-up clinic whom your healthcare provider can call for specialized information or advice. Phone consultations are common.

  • Based on an accurate understanding of your treatment, know what medical services you require and what type of monitoring you need, and ensure that these are provided by your healthcare team. See Healthlinks for Patient Education at (www.survivorshipguidelines.org). If you are not getting the follow-up you need, consider having a frank discussion about your concerns or locating a primary care provider with a better understanding of survivorship.

  • Learn what you need to know, surround yourself with knowledgeable professionals, and live your life to the fullest.

A nurse practitioner who runs a large, well-established survivorship clinic described: We really need to educate the community of healthcare providers. We have problems with healthcare workers who are attributing medical problems to cancer treatment that have nothing to do with the survivor’s cancer treatment. The opposite problem happens, too. Many physicians and nurses miss obvious and sometimes life-threatening late effects. For instance, women who had high-dose radiation to the chest may develop heart disease at a young age. They are too often diagnosed with asthma or anxiety, when they really have restrictive pericarditis.

Another nurse practitioner said: I’ve been taking care of survivors for 18 years. Many of them apologize for “bothering me” when they call with a question or concern. Almost always they are calling with good questions about appropriate issues. Even if you think it is insignificant, if it bothers you, discuss it with your healthcare provider by phone, email, or during an appointment.

My care team prepared me very well! A follow-up team had already been formed for me before I was cancer-free, which was incredibly helpful. Immediately after end-of-treatment, I had monthly check-ups. After a year, the check-ups became bi-monthly, then every 4 months, then every 6 months, and eventually yearly. The check-ups were done to ensure that the cancer did not come back, and included bloodwork, EKGs, x-rays, and ultrasounds.

 

The most helpful thing in working with my follow-up teams has been the consistency of the care providers. Seeing the same social worker, nurses, and specialists allowed me to feel comfortable and create a rapport with them over many different years. My physician ended up leaving at the end of high school and was replaced with a new doctor. This new physician is wonderfully qualified and cares a lot for me. It has all worked out, but it was definitely a difficult adjustment.

 

My treatment took place from age 4 to 6. I made frequent visits to the hospital most of grade school for checkups. Immediately following treatment, we continued routine bloodwork and follow-up visits which became increasingly less frequent. My care team continued to follow-up with me until I was 18, at which point I was finally phased out of hospital visits. A week after my 18th birthday, my mom and I took our last trip to the hospital and walked out knowing it was the last one. It felt like stepping over a threshold into a new era. Now, my current team of doctors still follow up with occasional bloodwork.

Working With Healthcare ProvidersReferences

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