Cancer

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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Cancer Scholarships and Grants

Cancer patients and their families experience a number of financial stresses related to their illness, medical, transportation, and care-giving costs in lost work time. There are agencies and foundations to provide support for medication costs and some supplies, but it often takes a savvy and committed patient to advocate for these service. Did I mention perseverent?

There are grants for living expenses, medical expenses and even fertility treatment. More common are education scholarships. Some are listed below.

Scholarships/Grants for Children with Cancer/Life Threatening Condition

Andre Sobel River of Life Foundation-Foundation offers financial assistance to single parents of chronically ill children referred by social workers, and an annual award from an Essay submission to young recipients (usually age 12-21) facing a life threatening illness. See Foundation website for current information.

Cancer for College awards scholarships to current and former cancer patients who are currently attending either a four year accredited university, junior college and/or graduate school.Scholarships applicants must already be accepted to a university and/or attending a junior college. Scholarship amounts vary, ranging from $100 one time scholarships to four year perpetual scholarships of larger dollar amounts.

Carolyn’s Compassionate Children Awards college scholarships in the amout of $1000.00 each to survivors of childhood cancer.

FinAid This page contains information about scholarships for cancer patients, cancer survivors, children of a cancer patient or survivor, students who lost a parent to cancer, and students pursuing careers in cancer treatment.

Friends of Scott Offers a $500 scholarship to college to cancer patient/cancer survivor. Also provides meals and transportation services for children in cancer treatment.

Kyle Lee Foundation College Scholarships for Childhood Cancer Survivors, especially Ewings Sarcoma

Michael A Hunter Memorial Scholarship leukemia or lymphoma patients and/or are children of non-surviving leukemia or lymphoma patients

National Collegiate Cancer Foundation-Offers scholarships for college students who have cancer and plan to continue their education. Essay required.

Nicki Leach Foundation-Provides grants/monies for cancer patients ages 16-25 opportunity to enjoy normal or unusual activities they might otherwise not be able to afford by providing them necessary funding which might include car expenses, clothing, hair or makeup costs as well as special funding that might include the purchase of a special trip, a camera, computer or cell phone.

Patient Advocate Foundation Scholarships for individuals that have or have had cancer or been diagnosed with a life threatening disease and are under the age of 25

Ryan Mullaly Second Chance Fund Scholarships to College bound cancer survivors 22 years and younger who underwent radiation/chemotherapy for cancer while in high school.

The Ulman Fund Scholarships for cancer survivors or children who have lost a parent to cancer.

Tim & Tom Gullikson Foundation Scholarships for post high school education are made available to brain tumor patients/survivors and/or children of brain tumor patients/survivors to enable them to pursue educational programs at accredited four-year colleges and universities, two-year colleges, vocational-technical schools or other institutions of higher learning.

Working Against Cancer’s Survival Scholarship Program assists young adult cancer survivors (ages 30 yrs and under) by providing awards toward academic and vocational education

Grants for Adult Cancer Patients

Brenda Mehling Cancer Fund The Brenda Mehling Cancer Fund (BMCF) supports patients ages 18-40 as they undergo cancer treatment. It provides services to meet daily needs that are not covered by insurance. Typical grants measure $600 and include co-payments, rent and mortgage, transportation, car insurance, repairs, and groceries.

The Sam Fund -Non-profit organization that provides grants and scholarships to young adult survivors of cancer for a variety of expenses- school, jobs, etc.

Breast Cancer Survivors Breast Cancer Survivors is a non-profit organization that provides temporary financial assistance to individuals undergoing treatment for breast cancer who are unable to meet their basic living expenses due to the impact of their disease. BCS currently helps individuals in selected areas in Southern California ONLY. If you live outside Southern California, we suggest contacting your local Susan G. Komen Foundation for possible resources in your area.

Other

Cancer Fund of America will send products- nutrient drinks, diapers, gloves- to cancer patients who fill out one page application, with doctor completing part of page.

The Sarcoma Alliance Financial Assistance for patients diagnosed with sarcoma cancers( child and adult) in the form of $1000.00 grants/stipends. Download application online.

One Step At A Time-Offers scholarships to send kids with a cancer diagnosis to camp.

: Cancer, scholarships & grants
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