Archive for May, 2008

Cancer Survivorship

In 1971, there were less than 3 million cancer survivors living in the United States. In 2004, there were almost 11 million. As these numbers increase, and cancer survivors age and experience the late effects of treatments, new health challenges are faced that “everyday” doctors may not be familiar with. Cancer survivors are often in a position to need to advocate for their health needs in a different way than others.

Cancer Survivorship - Childhood Cancer

  • Childhood Survivor Health Clinic Link to childhood survivor health clinics. Survivors of childhood cancer may visit these clinics (no cost) for screenings for late effects. Clinics are listed by state. Adult clinics are also listed at the Livestrong site. In Southern California UCLA has both an adult and childhood cancer survivor clinic.
  • Children’s Oncology Group -Guidelines for the care of survivor’s of childhood cancer, download-able for primary care physicians if survivors do not live near a survivorship clinic. Guidelines per type of cancer treatment, late effects possible, symptoms, treatment, and screening necessary. It was in the 70′s and early 80′s that cancer began to be treatable, and children who had these treatments are now getting older and having the late effects. It is this model that the adult guidelines will be based on.
  • Cancer Survivorship This is the CDC page on cancer survivorship, on the main page there is also a link to the Spanish translation of the site. Additionally there are resources for primary care physicians who will be dealing with the 10 million cancer survivors and the late effects they face.
  • NCI – also has a summary of this article and a list of articles and studies that have been published from this long term/longitudinal study.
  • Cancer Survivors Project – The Cancer Survivors Project is an organized, international community of long-term cancer survivors and their friends working together to improve the lives of children and adults after cancer. This is a private organization, founded by cancer survivors experiencing the late effects of treatment even before the research was published. There are many resources to research articles, books, and medical-care guidelines provided here.

Research Articles

Chronic Health Conditions in Adult Survivors of Childhood Cancer Kevin C. Oeffinger, M.D., Ann C. Mertens, Ph.D., Charles A. Sklar, M.D., Toana Kawashima, M.S., Melissa M. Hudson, M.D., Anna T. Meadows, M.D., Debra L. Friedman, M.D., Neyssa Marina, M.D., Wendy Hobbie, C.P.N.P., Nina S. Kadan-Lottick, M.D., Cindy L. Schwartz, M.D., Wendy Leisenring, Sc.D., Leslie L. Robison, Ph.D., for the Childhood Cancer Survivor Study. This is the link to the full text article that the New England Journal of Medicine published in 10/2006 on the Late Effects of Childhood Cancer. (link is to full article)
The Two-Edged Sword of Curing Childhood Cancer , Philip M. Rosoff, MD. New England Journal of Medicine, October, 2006. (link is to full article)

St Jude Long Term Follow Up Study – The Childhood Cancer Survivor Study (CCSS). St. Jude coordinates this on-going long term study. Not an article exactly, but the study on which many of the research is built.

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Cancer – Support

Support- Groups and Forums

Cancer Care-Non-profit agency that provides free professional support for those who have or are dealing with cancer. Support groups are for patients with cancer- by cancer types and in general, for caregivers, partners, and spouses, and for those who have lost a loved one to cancer- groups for those who have lost a partner, parents who have lost a child, and those who have lost loved ones.

Care to Share Cancer Connection-National Children’s Cancer Society forums

Planet Cancer – Primarily for young adults with cancer. An upbeat site. Check out the “cancertainment” tab at the top if you want a little ‘sick’ cancer humor. Links to some excellent information with a kind of ‘in your face” attitude. Some of the comics and items in the store are really funny. Sick and kind of should be wrong, but really funny.

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Cancer- General Sites

General Sites

1. American Cancer Society This is a very broad site that provides information on types of cancer, treatments, research, survivorship, and links to get more information. It does provide information about cancer in Spanish which also makes it a good resource.

2. Lance Armstrong Foundation A very optimistic, positive organization on an individual and organizational level. Find information and links for support, grants, opportunities to volunteer, and hear other survivors stories.

3. Planet Cancer – Primarily for young adults with cancer. An upbeat site. Check out the “cancertainment” tab at the top if you want a little ‘sick’ cancer humor. Links to some excellent information with a kind of ‘in your face” attitude. Some of the comics and items in the store are really funny. Sick and kind of should be wrong, but really funny.

4 .ACOR-Association of Cancer Online Resources -This is an excellent site with links to books, clinical trials, publications, and support groups. The researchers at UCLA and USC gave me this site as a reference and it is invaluable.

5 . National Cancer Institute – treatment protocols, clinical trials

6 . Cancer Quest Put on by Emory University this is one of the best sites to explain the disease process, detection, diagnosis and treatment for those of us who are not neurobiologists. No assumptions are made regarding prior knowledge about cancer, and the information is sufficiently detailed. It is also nicely presented for those of us who like a good video production.

7. Radiologyinfo – Developed by the American College of radiology, patient guide to radiology procedures (radiation/MRI/nuclear medicine).

6. Clinical Trials Government listing of clinical trials for cancer and other medical conditions

7. CURE – is a quarterly publication of research, updates, and treatments. Online and free paper mailings for cancer patients.

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Books- Cancer

Survivors

Anticancer: A New Way of Life David Servan Schreiber is clinical psychiatrist at the University of Pittsburgh and a cancer survivor. I this book he weaves compelling research about a cancer prevention lifestyle along with his own story.


Cancer Survivorship: Today and Tomorrow- Dr. Ganz is a UCLA researcher and heads the Adult survivorship clinic there. This book is written for nurses, social workers, mental health professionals and medical providers of service for long term survivors.

Survivors of Childhood and Adolescent Cancer: A Multidisciplinary Approach (Pediatric Oncology)Wendy Hobbie & Kathleen Ruccione have been published extensively over the years in the field of childhood cancer survivorship. They- and the other authors have written this book about a multidisciplinary approach to the care of survivors managing late effects. Given recent research, I am sure newer information will be coming out, by these author

Childhood Cancer Survivors: A Practical Guide to Your Future (Childhood Cancer Guides) Book written for survivors.

Children

How to Help Children Through a Parent’s Serious Illness

Tickles Tabitha’s Cancer-tankerous Mommy

Grief/Loss

 

The Fall of Freddie the Leaf: 20th Aniversary Edition From Publisher-Originally published in the fall of 1982, the wonderfully wise and strikingly simple story of a leaf named Freddie has become one of the most popular books of our times. How Freddie and his companion leaves change with the passing seasons, finally falling to the ground with a winter’s snow, is an inspiring allegory illustrating the delicate balance between life and death.

The Next Place-An inspirational journey of light and hope to a place where earthly hurts are left behind.

Tear Soup Nicely illustrated, told in fable form.

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Volunteer

Volunteer work is a great way for children to learn empathy, teach gratitude, give back to the community, and help others. It does not hurt to earn those community service hours either. While many teenagers may not have time for a job with busy schedules, or teens younger than 16 may not be able to work, there are volunteer opportunities for children ages 5 and up.

Search for Volunteer Opportunities

Volunteer

  • CHOC Volunteer at Children’s Hospital Orange County. Must be 16.
  • Kaboom national non-profit organization that envisions a great place to play within walking distance of every child in America. Volunteer or start a playground in your area.
  • Locks of Love Donate your ponytail for people experiencing hair loss from chemotherapy
  • Teen Angels a group of 13-18 year-old volunteers that have been specially trained by the local law enforcement, and many other leading safety experts in all aspects of online safety, privacy, and security

Global Projects/Travel

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