All survivors need a long-term relationship with a knowledgeable and attentive healthcare provider (physician or nurse practitioner) whom they trust. If you are a cancer survivor, the provider you choose should oversee all of your medical care and refer you to specialists as the need arises. The provider should either specialize in treating survivors of cancer or be willing to work with you to keep up with the latest research and recommendations for care. Follow-up care for survivors of childhood cancer is lifelong. It is an investment in your future health, and perhaps your life, to spend time finding a healthcare provider who is capable of taking care of your particular needs.
The first thing you share with a healthcare provider is your medical history, which includes your cancer diagnosis and treatment. Many of the 325,000 survivors of childhood cancer in North America do not know the specifics of their treatments. 1 Some do not even know they had cancer. If you don’t have a detailed treatment summary, go back to your treating institution and get this important information. The more time passes, the harder it may be to track down the specifics of your treatment.
The easiest way to get a record of your treatments is to take the personal health history document in the back of this book to the healthcare providers who treated you when you had cancer and ask them to fill in the information. This health history will become an indispensable part of your medical records for the rest of your life. It should be kept in a safe place, and a copy should be given to each of your healthcare providers. When you leave home to begin your adult life, this document should go with you.
If you do not have a copy of your health history document, have a doctor or nurse at the institution that treated you write down the following important information:
Name of disease
Date of diagnosis and relapse, if any
Place of treatment
Dates of treatment
Clinical trial protocol number and name, if applicable
Names of attending oncologist and nurse practitioner
Names and total dosages of chemotherapy drugs used
Name of radiation center
Dates radiation was received
Amount of radiation and to what body part (for example, whole body, cranial, pelvis)
Date and type of any surgeries
Date and type of stem cell transplant(s), if any
Any major treatment complications
Any persistent side effects of treatment
Recommended medical follow-up
Contact numbers for treating institutions
It is also a good idea to obtain copies of key x-rays and scans. It is also important to get copies of the reports for x-rays, scans, and major surgeries that were part of your treatment. Hospitals and clinics may not retain these or they may be put in storage and be difficult to track down at a later date. You may be charged for copies, but it is well worth the price for the peace of mind that comes from having your own set of records. If you develop late effects from treatment, these early records are crucial for your current healthcare providers to review.
If late complications arise, the current doctors want to and need to see complete medical records. For instance, in my case they would have a much better idea of how extensive the heart muscle damage is if they could see the radiation records that don’t exist anymore. I have spent the last year chasing medical records. It just never occurred to me that I would need them or that they would in the end be unobtainable.
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I’m a social worker now, and I recently moved to a big city. I called the pediatric oncology clinic at the children’s hospital to ask about follow-up and was told they only follow kids who were treated there. They didn’t have a recommendation for me. Then I called the women’s hospitals, and they seemed to be most familiar with breast or ovarian cancer survivors—not childhood leukemia. Then I contacted the cancer society’s facilitator of young adult survivor programs. She gave me the name of a nurse, who recommended a doctor. I made an appointment with the doctor and told her that it had taken a long time to find her, but I didn’t know if I was in the right place. She told me I was. And it’s been perfect since then.
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 men and women faced complex medical and psychosocial effects from their years of treatment. Fitzhugh Mullan, M.D., 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.” 2
Some institutions, realizing the need for long-term services for survivors, started comprehensive programs. Other institutions have difficulty obtaining support and the financial resources to start and maintain follow-up programs.
You wouldn’t believe the problems survivors have with the medical community. Some doctors, acknowledging the rapidly growing body of biomedical literature demonstrating late effects as a major problem of “cure,” are managing it very well. And some are playing ostrich, sticking their heads in the sand and pretending it isn’t happening. The ostrich approach could cost us our lives. Ironically, I see the same set of responses from survivors themselves. We need to recognize that this isn’t time for us to panic or do the ostrich thing, but a time for us to face reality with all the courage we summoned up for that first battle. Then we can find the strength to deal with this.
I’m glad my doctor isn’t in the ostrich group. He deals with late effects realistically as things that may never happen to me, but problems that we simply need to keep a watchful eye out for, “just in case,” so they could be treated as early as possible. I think that the state of healthcare for long-term survivors is very much like the Titanic: those in charge of our care have stayed calm and complacent for far too long. We survivors don’t expect miracles, just the truth.
History of follow-up 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.” 3 In 2003, the Institute of Medicine published a book called Childhood Cancer Survivorship : Improving Care and Quality of Life , which stressed the importance of follow-up programs. The Children’s Oncology Group then published follow-up guidelines in 2004 to help survivors and the healthcare providers who treat them ( www.survivorshipguidelines.org ) . In addition, the American Academy of Pediatrics published guidelines in 2004 for pediatric cancer centers, which stressed the importance of long-term follow-up with “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.” 4
As a result of these recommendations and a growing awareness of the needs of survivors of childhood cancer, some institutions began follow-up clinics using a multidisciplinary team to monitor and support survivors. The nucleus of the team usually includes a nurse coordinator, pediatric oncologist, pediatric nurse practitioner, social worker, and psychologist. They have a close working relationship with cardiologists, endocrinologists, orthopedic surgeons, and other specialists whose services are needed by some survivors.
Every patient at our facility has a family care coordinator, which for us has been great. Before they started this program, every time we called we got a different nurse. Since my daughter has all sorts of late effects—seizures, brittle bones, a feeding tube, cognitive problems—trying to explain over and over again was difficult. Now we call and we always get our coordinator.
A nurse practitioner who runs a large, well-established follow-up clinic said:
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.
Comprehensive follow-up care
Follow-up 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 follow-up clinics not only provide comprehensive care for long-term survivors, but also participate in research projects that track the effectiveness of, and side effects from, various clinical trials. In addition, members of the follow-up 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.
I had neuroblastoma at age 9 months and I’m now 34. What they do in the long-term follow-up clinic is take an abdominal and chest x-ray and blood work. They ask how I am feeling, and then I leave. It is staffed by the oncologist I saw for treatment. They don’t even do a physical exam. I never have been cautioned about any behaviors that increased my risk for late effects. There is never a mention of eating, drinking, sex, or sun exposure. Nothing. I’m now on a committee to change that because a teenager is not going to volunteer information during a medical appointment. If we create a comfortable climate and give out brochures about potential problems and how to take care of your health, maybe our survivors will get better care.
My daughter had high-risk ALL (acute lymphoblastic leukemia) and has numerous late effects including learning disabilities, endocrine problems, hypothyroidism, osteopenia, and others. We go to an excellent follow-up program that not only provides thorough physical evaluations, but also discusses in a caring way what we may face in the future. They also talk with my teenage daughter about why doing illegal drugs, smoking, or having unsafe sex is riskier for her than for other teens. They have a whole group of specialists that we see during the same visit. The nurse practitioner writes summaries and sends them to my daughter’s pediatrician and us. And they help us educate the school, her doctors, and her therapists. They are wonderful.
Finding follow-up care
Many cancer centers see long-term survivors, but do not have a comprehensive program. Others have excellent follow-up clinics. A group of parents and professionals called more than 300 institutions in the United States and Canada that treat children with cancer to assess the services each provides for survivors. The results of this survey (which is updated periodically) are on the Internet at www.ped-onc.org/treatment/surclinics.html . 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?
The children’s hospital that treated my daughter has no follow-up program. So I did some research and now we fly 1,000 miles every year to the closest good program. The appointments last a couple of hours. We see the attending physician who specializes in late effects, a social worker, and an educational specialist. A pediatric radiologist reviews her bone age x-rays, and she has blood work done that is ordered by the pediatric endocrinologist there. They also do all of the recommended screenings that she needs such as an echo every 2 years and a bone density test every 3 years. They are very helpful and thorough.
I was diagnosed with retinoblastoma in both eyes in 1956 when I was 23 months old. Both eyes were removed and I had radiation. My mother took me back for checkups, but they ended when I was 5 years old. I’ve basically lived a normal life. I had no recurrence. The rehab agency sends me to a normal doctor every so often for a checkup. He looks and says, “Everything seems okay,” but I wouldn’t call it a thorough evaluation by any means. No one’s ever really followed my other late effects: hearing loss, dental problems, and sensitivity to the sun.
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 may help children who will be diagnosed in the future.
I think one of the most difficult issues surrounding late effects is that some doctors want to minimize their importance and get you to focus on the “big picture,” that you still have a living child. I think I can appreciate what the chemo and radiation did for my child and still get serious about getting him help to minimize the effects they will have on him as he grows older. Also, I find our oncologist to be much more straightforward about accepting and dealing with the clear-cut physical late effects of treatment. He is willing to talk very matter-of-factly about the destruction of my son’s tear ducts and the large cataract caused by high-dose radiation treatments, but he has been more hesitant to help us look into the neuromuscular issues caused by chemo that are harder to diagnose and more complicated to treat. Ultimately, though, when I persisted in asking him about what looked like pretty major deficits, he referred us to a terrific occupational therapist, and my son is making good progress.
Richard Klausner, M.D., 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.” 5
Our children’s hospital doesn’t have a follow-up program. Your child just sees whatever fellow happens to be there. There are no referrals, no discussion of what to watch out for. Basically it’s a CBC (complete blood count) and a physical exam. I really think part of the problem in establishing these programs is that the doctors don’t really want to learn about all of the late effects. I think they really feel a lot of satisfaction about curing so many kids (and we are grateful!), but knowing the price the survivors and their families sometimes pay can be very painful. That’s why I think there should be a completely different program with attending physicians who specialize in late effects seeing the survivors.
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 distress and frustration.
Well, we had our checkup yesterday, and our nurse practitioner gave us some good news. We will be transferring to the long-term effects clinic after our next appointment in 6 months. The long-term clinic focuses not so much on possible relapse, but on the long-term effects of childhood cancer. The clinic is run by an oncologist and a nurse. I was very happy to hear this. It really feels like we are putting this phase of our life on the back burner. I know it will never completely come off the stove, but knowing it is just simmering will be wonderful.
Some survivors feel that to express their resentment or anger 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 in late effects who was not involved in your treatment, you will not be invested in trying to protect your former healthcare provider’s feelings. These problems do not arise at institutions in which treatment teams work closely with late effects specialists. At these locations, survivors get the benefits of seeing both kinds of healthcare providers without having to choose between them.
I know that they had to do the treatments to save my life, but these treatments have lots of long-term effects. I think doctors who give front-line treatment have a moral and ethical responsibility to ensure that any child or teen they treat gets educated about the risks and steered toward a place where they can get comprehensive follow-up services. The harm that has been done in saving lives needs to be addressed. We can all have more than one feeling about this. Survivors are grateful for their lives, yet sad/angry/grieving about the price they paid. Doctors can be happy to cure the kids and be disappointed or pained or angry that late effects resulted. But let’s not use the difficult feelings to erect barriers to follow-up. Let’s work together to address the issues.
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I think emotionally it’s very difficult for healers to deal with late effects. They do cure lots of children with cancer these days, but often at great cost. It’s sometimes difficult for both survivors and treating doctors to face and discuss the physical, psychological, and social late effects. It reminds me of the line from the musical “The Wiz”: “Don’t nobody bring me no bad news.”
Creating your own follow-up 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 care 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.
I have multiple late effects and see many specialists. I don’t have a family doctor who looks at all of me. So I call my GI (gastrointestinal) doctor my “triage doctor.” He is the one who discovered my heart problems. Whenever I see him I ask him to look over my whole body, but I’ll only make him care for the GI problems. We are a good team.
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I was treated by an adult oncologist when I had Hodgkin’s and have continued to see him for 22 years. We never needed a follow-up schedule because I have so many late effects. I’ve seen him every 3 or 4 months since I was diagnosed. Thank heaven for my doctor. When I’m sick, I can call him up and he believes what I tell him. I don’t have to march my sick body down there every time to make sure I’m telling him the truth. We really trust one another and I’ve had great care.
The most important qualities to look for in your primary care 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.
I like being followed at a teaching hospital. I just don’t think most doctors have time to keep up with the literature. I think that’s why the conscientious ones go to seminars so they can get a bunch of information in a hurry. There is a lot for each doctor to know. So it does place responsibility on the patient. When you have an unusual pattern going on, have several doctors look at you. Go for that second opinion so you get more information. I don’t expect doctors to know everything, but I do wish that more were intellectually curious. Those are the ones who have helped me the most with my multiple late effects.
Try to find someone who is willing to work with you to address any health problems that arise and do 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. If your current healthcare provider stands with one hand on the doorknob while you are asking questions, it may be time to look elsewhere.
I was diagnosed in 1976 with leukemia (ALL). After 5 years of treatment, I maintained contact and had annual checkups with my cancer clinic as well as the family pediatrician. Clinic visits included blood tests and physicals, as well as psychosocial adjustment and learning patterns. During high school, I continued with checkups; during college, I may have missed a year.
In graduate school, I fell out of follow-up. This was due to many factors, including living out of state, no longer being covered under my parents’ insurance, and not really understanding the need to go back to the childhood cancer clinic. I really didn’t fit in there anymore. I did get a copy of my records and gave a copy to my general practice doctor. This was just in the nick of time as my hospital was bought out and closed down.
Then about 3 years ago, I moved to a large city, and after much struggle, I found a doctor who specialized in long-term cancer follow-up and late effects at a university hospital. I now see her annually as well as a general practitioner and a gynecologist.
The more informed you are about your own risk profile, the better you can advocate for appropriate care. 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. Spending the time to find a caring healthcare provider to whom you can go and say, “I’m having these symptoms,” is well worth it. Together you can work toward a healthy life.
I had Wilms tumor in 1962 when I was 2 years old. I have no late effects other than slight scoliosis (curvature of the spine). I went for yearly checkups with an obstetrician but never had a primary doctor until recently. I had had joint swelling off and on for years and had been to several doctors who all blew me off. I found a really great primary care doctor, and she sent me to a rheumatologist who found swollen lymph nodes. So I was sent to an oncologist for a thorough evaluation. It was not cancer, but I was very glad my primary care provider sent me to see the specialists.
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.
Our transplant center was relatively new (my daughter was their 21st patient) and thus inexperienced at follow-up. My daughter wasn’t growing and I pushed for an appointment with an endocrinologist. I knew she’d have endocrine problems because the tumor was right next to her pituitary gland and she got a lot of radiation there. After seeing the local endocrinologist, I told my oncologist that I didn’t have a lot of confidence in the endocrinologist. He said there were only a handful of doctors in the country who were experienced in what my daughter was going through. I researched the literature and went to get a second opinion from one of the leading pediatric endocrinologists in the country. He explained clearly what was known and what was not. It was reassuring to talk with him.
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I am a big fan of second opinions. They either reassure that you are on the right treatment plan or tell you are on the wrong treatment plan and explain why. What makes more sense than that?
The following are some ways to advocate for the best possible medical care:
Use the personal health record at the back of this book to educate your primary healthcare provider and all specialists about your treatments.
Refer to the Children’s Oncology Group’s recommendations for follow-up care.
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. A nurse practitioner from a busy follow-up clinic 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.
Find a resource person at a 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. 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.
I have been a Hodgkin’s survivor for 33 years. I recently asked my husband what his strongest memory about my health problems is. He said when I became proactive and insistent about my care 4 years ago. It changed my healthcare completely. Survivors need to get second opinions and insist on tests if they think something is going on. This reduces your anxiety as well as minimizes risks. I think we will educate the doctors, one by one, by providing them with information on survivorship that they don’t have. We all need to develop a partnership mentality. We survivors are on the leading edge of these changes. Doctors are strong team members with information and skills that we need. We, however, bring to the partnership knowledge, information, and late effects that the doctor may not have seen.
Learn what you need to know, surround yourself with knowledgeable professionals, and live your life to the fullest.
Information is a double-edged sword. There is considerable relief in knowing what the future might hold. But often when we are told we are cured, we go into magical thinking that it is over. It is not for most of us. Reading a book about late effects may bring grief. You may realize that life has been forever changed. But grieving the losses and even what the future may hold is a way of deepening your life.
Table of ContentsAll Guides
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating the System
- 5. Staying Healthy
- 6. Diseases
- 7. Fatigue
- 8. Brain and Nerves
- 9. Hormone-Producing Glands
- 10. Eyes and Ears
- 11. Head and Neck
- 12. Heart and Blood Vessels
- 13. Lungs
- 14. Kidneys, Bladder, and Genitals
- 15. Liver, Stomach, and Intestines
- 16. Immune System
- 17. Muscles and Bones
- 18. Skin, Breasts, and Hair
- 19. Second Cancers
- 20. Homage
- Appendix A. Survivor Sketches
- Appendix B. Resources
- Appendix C. References
- Appendix D. About the Authors
- Appendix E. Childhood Cancer Guides (TM)