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For Pediatric and AYA Cancer Survivors a “Cure is NOT Enough”

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I’ve never said the phrase A Cure Is Not Enough out loud. It sounds like the title of some sort of weird movie. I feel selfish for even thinking it. I am a long-term survivor of an incurable blood cancer and I thank my lucky stars daily for living as long as I have. I was diagnosed in 1994 at the age of 34. At the time I didn’t think of myself as an adolescent and young adult (AYA) cancer patient but I learned later that the AYA group means anyone diagnosed between the ages of 15-39.

The reason for writing a blog post titled A Cure Is Not Enough is also something I have learned in the years after my cancer diagnosis and chemotherapy and radiation treatments in the late nineties.

My post cancer therapy life is all about the long-term and late stage side effects that result from aggressive toxic chemotherapy and radiation. The articles and studies linked below parse the cancers and health problems that come from all the toxicity that pediatric and AYA cancer survivors may be in store for but the bottom line is that all of us live with an increased risk of health problems that result from our cancer therapies.

The reason why I write A Cure Is Not Enough for pediatric and AYA cancer survivors is that I believe that many if not all of the long-term and late stage side effects from toxic therapies can be both managed and or healed. I believe this because I have spent the past twenty or so years learning to manage and or heal my own late-stage and long term side effects.

For more information about preventing, managing or healing long-term and late stage side effects from aggressive toxic therapies scroll down the page, post a question and I will reply ASAP.

Thank you,

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

For Patients With Cancer, Cure Is Not Enough

“Many studies have shown that childhood and adolescent cancer survivors are at increased risk for chronic medical problems and emotional late effects as they age.2– 5These late effects influence overall health and quality of life…

While the impact of cancer and its treatment on children is an area of increasing research, there is a paucity of late-effects data for young adults

Initial studies of neurocognitive late effects in pediatric survivors have focused on the harmful effects of cranial irradiation on the developing brain, but more recent studies have examined the impact of chemotherapy alone in survivors of acute lymphoblastic leukemia (ALL). A recent meta-analysis of 10 studies included 509 survivors of ALL treated with chemotherapy alone and 555 controls.11 The study showed significant moderate impairments in full scale intelligence quotient (IQ), verbal IQ, performance IQ, working memory, information processing speed, and fine motor domains. However, while the neurocognitive impairments in patients with ALL have been well-established, there is a paucity of information about these outcomes in survivors of pediatric solid tumors….”

Long-term outcomes in childhood, young adult cancer survivors

“…examined the risk for hospitalization up to 34 years after a diagnosis of adolescent and young adult cancer. The study included 33,555 five-year cancer survivors diagnosed from 1943 through 2004 with a comparison group from the general population. The authors identified 53,032 hospitalizations in cancer survivors for one or more of 97 disease categories….”

Cancer survivors had an overall increased relative risk for hospitalization compared with those in the general population…

“Advances in cancer therapy have led to increased survival; there are more than 9 million 5-year survivors of cancer in the United States…

While the progress made in the management of cancer in children and young adults has been gratifying, we must remember the words of Giulio D’Angio, who reminds us that ‘cure is not enough.'”

Long-term Risk of Hospitalization for Somatic Diseases in Survivors of Adolescent or Young Adult Cancer

Objective  To examine relative and absolute excess risk for hospitalizations up to 34 years after diagnosis of adolescent and young adult cancer compared with population comparisons…

Results  After a median follow-up of 14 years, we identified 53 032 hospitalizations in cancer survivors, whereas 38 423 were expected, resulting in an overall RR of 1.38 (95% CI, 1.37-1.39)…

Conclusions and Relevance  The large number of survivors and the use of hospital discharge diagnoses made it possible to draw a comprehensive picture of the complex inpatient disease burden experienced by survivors of adolescent and young adult cancer. The findings underscore a great diversity of cancer-related health problems that physicians and patients should be knowledgeable about.”

 

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3 comments
Chemotherapy Side-Effects- Can you Heal Chemobrain? says 5 years ago

[…] This shouldn’t be a surprise. Chemotherapy causes collateral damage. The kind of damage that doesn’t heal in kids. So why should adults think that they can […]

Reply
Laurie Ellis says 6 years ago

Hi David,
I like you am a cancer survivor. I was diagnosed with ALL in 1973, I was 4 years old then.
I had high dose cranial radiation and chemo, which they didn’t even know would work then.
I went into remission but relapsed in 1987. right before freshman year in college and had to start a year later while going through chemo again. I have been in remission ever since but like you, after 20 plus years am dealing with a lot of late side effects of my treatment.

I had my share of issues growing up too. Learning disability (Memory and test taking problems) and I had horrible math problems and stuggled the whole way through school and college. Now at the age of 47 I am having some health issues.

I had a TIA (mini stroke) in 2010, My doctors said was due to narrowed blood vessels in my brain. (from the radiation) I have osteoarthritis in both knees and deteriorating cartilege. Among a miriad of other issues.

In short I know exactly what you mean and People, survivors and people going through treatment need to be made aware of the late efects of their treatment. When I first got sick, there was no knowledge of this but now there is and it needs to be heard.

Thanks for the blog,
It means a lot that there are other survivors out there experiencing what I have.

Laurie Ellis

I agree with you, that curing any childhood cancer

Reply
    David Emerson says 6 years ago

    Hi Laurie-

    Thank you very much for your input. I think I can appreciate all sides of this debate, thinking, whatever. Please hang in there and let me know if there is anything that PBC can do for you.

    Thanks,

    David Emerson

    Reply
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