When Beating Cancer is Only the Beginning: Survivorship at the CBCC

By itself, a defeated cancer does not generally leave scars behind. The experience and therapies designed to defeat it are another matter.

"The intense effort to care for and cure a child with cancer does not end with survival." [1]

Life After Cancer

This is medicine's miraculous modern trade-off: the possibility of life after cancer in exchange for some of the quality of that life. Cancer has been the scourge of humankind for longer than recorded history, and until very recently, there was no trade-off. The disease was an unstoppable malignancy on a one-way street.

Thus the advent of such a trade-off – the era of relatively large numbers of people surviving cancer – was and is an extraordinary achievement. Of course, it is an ongoing, unfinished one but it has given life to a new challenge: how to keep those cancer survivors in good health as they resume their lives.

One solution is continuous modification of the harsh treatments needed to beat cancer, to mitigate their toxic effects. Another is the survivorship care plan.

Survivorship Care Plans

In the cancer world, a survivorship care plan (SCP) is like a parting gift to contestants on game shows, except these players didn't lose a game – they won a battle. With an estimated 13 million cancer survivors in the U.S. today and 18 million expected in 2022 [2], there is a a need among survivors to continue health care that emphasizes the fact that they beat cancer.

This is certainly the reality for the 360,000 childhood cancer survivors [3]. In 2003, the Institute of Medicine released the consensus report "Childhood Cancer Survivorship: Improving Care and Quality of Life." [1] This report helped shape where post-treatment care should take place for childhood cancer survivors, who should provide the care, and what its components should be.

A decade later, long-term survivorship plan guidelines for childhood cancer survivors are the responsibility of Children's Oncology Group [4], the biggest and most influential pediatric oncology cooperative in North America, if not the world.

SCPs at the Children's Blood and Cancer Center

The Children's Blood and Cancer Center at Dell has its own Cancer Survivorship Clinic, run by nurse practitioner Sharon Odozynski, RN, MSN, FNP-C. The Chief of Survivorship Services is Dr. Virginia Harrod, M.D., Ph.D., a board-certified pediatrician and pediatric oncologist who developed the clinic according to the cancer survivorship center concept, in which patients are seen in a place devoted to survivorship and physically separate from where they received their treatment.

Given their limited space, which they technically share with the treatment center, the clinic has done a remarkably good job in achieving this.

"We make sure the patients enter through a different door than the one they used during treatment, there's a different check-in, the whole 'feeling' is different, and this is important," says Dr. Harrod. "It's also important that our clinic deals strictly with issues related to cancer survivorship. These patients are best served by this approach, and not by one where they're being seen alongside patients who are actively dealing with disease."

The focus changes from the acute minutiae of frequent blood tests to a more holistic, whole-patient approach.

"Our focus is on how the patient is doing – how things are going at school, or at work, or at home; what kinds of goals they have, what they're doing towards reaching those goals. Within that framework we integrate their medical care. And we might still be dealing with issues relating to sedentary lifestyle, nutrition, even physical therapy."

One major problem is reintegrating – returning to the world they lived in before their diagnosis – but Harrod says that's just the tip of the iceberg.

"While the mental and psychological scars have until recently been undervalued and under-appreciated in survivorship, the physical problems facing young survivors include just about everything you can think of. Almost no organ function is safe."

Because every patient receives individualized treatment based on factors like age and symptoms, the standard guidelines for long-term follow-up care can't rely on something so basic as cancer subtype.

"Individually, survivorship care plans begin with the treatments they received, then we tailor that down to cumulative dosages and exposures – for instance, how much total radiation did they receive and to what areas of the body, what drugs were they given and in what dosages – because we can expect that lifetime exposures to certain drugs or therapies will have potential consequences to certain organs."

Mitigating Toxicity: An Example

The Passport for Care®

All treatment information is included in a survivorship summary prepared for each patient, detailing not only those specifics but also including things like screening recommendations. When patients have completed treatment, the CBCC utilizes a web-based program called the Passport for Care® Survivorship Care Plan. The idea is that once patients reach what Dr. Harrod calls "the very vague 'age of independence'" and they transition away from the survivorship clinic and pediatric care to adult care elsewhere, they will use the information to make informed health decisions for years to come.

Yet no matter how much information the Clinic can compile for the patient, there's only so much they can do. For this reason, Harrod puts a strong emphasis on education.

"Education is a huge component of what we do. It's important to convince them that ongoing medical care is crucial and that they need to be vigilant. That gets a little bit easier as we're able to show them statistics that illuminate their risks of experiencing late effects from treatment."

And their risks are indeed high. A 2006 survey of 10,000 survivors showed that 73 percent had chronic health conditions 30 years after diagnosis, and 42 percent of those were severe or life-threatening. So, as an example, a person who was 10 years old when treated for cancer might now be 40 with a chronic health condition that was likely caused by their treatment.

"I can't emphasize this enough, childhood cancer survivors need to still be in a medical environment, because often it's the small things, the silent things, the things you can't feel but that are there, like having high blood pressure or being in a pre-diabetic stage, that cause the biggest issues. These are health conditions that might affect the general population in their 50s or 60s; they affect our survivors in their 30s and 40s."

This means that some national screening guidelines won't apply to childhood cancer survivors. For example, the survivorship summary for a female who had Hodgkin's lymphoma and whose treatment included chest radiation might include a recommendation that breast cancer screening begin a decade earlier for her than it would for women with no such risk factor.

Without a plan, and the wisdom and diligence to adhere to it, survivors won't know these things. Survivorship care plans therefore testify as much to preventive health care as they do to quality of life.

"Unfortunately, cancer survivors or not, a lot of 30- and 40-year olds don't go to the doctor," adds Harrod. "This makes it that much more crucial that we, their original providers, equip our patients and their future providers with all the information needed to offer them not just a long life, but a healthy and fulfilling one as well."

This is the eighth installment in my series on the Children's Blood and Cancer Center at Dell Children's Hospital in Austin, Texas. The prior seven are listed below:

• Introduction: Uncommonly Ordinary
• Part I: Not Your Average Prom
• Part II: Teenage Cancer: One Girl's Story
• Part III: A Food Fight for Life
• Part IV: Clowning Achievement
• Part V: Superhero Kids
• Part VI: Peaceable Kingdom

End Notes:
1. Maria Hewitt, Susan L. Weiner, and Joseph V. Simone, Editors, National Research Council. Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: The National Academies Press, 2003.

2. Siegel R, DeSantis C, Virgo K, et al. Cancer treatment and survivorship statistics. CA Cancer J Clin 2012 62:220–241.

3. Armenian SH et al. Children's Oncology Group's 2013 blueprint for research: survivorship and outcomes. Pediatr Blood Cancer. 2013 Jun;60(6):1063-8.

4. Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 3.0. Arcadia, CA: Children's Oncology Group; October 2008.

5. Krull KR et al. Long-term decline in intelligence among adult survivors of childhood acute lymphoblastic leukemia treated with cranial radiation. Blood, 2013 Jul 25;122(4):550-3.

6. Duffner PK. Long-term effects of radiation therapy on cognitive and endocrine function in children with leukemia and brain tumors. Neurologist. 2004 Nov;10(6):293-310.

The following table, from the IOM's 2003 report and reprinted here without permission, highlights only selected late effects of treatment for certain cancers among children: