Wednesday, March 19, 2008

Pediatric cancer survivors need long-term follow-up

I thought about making the title of this posting be something like the positive statement "My oncologist 'signs off'..." or the, hmmm, less than positive statement "the problems of success" (one of my husband's favorite phrases).

It's been ~13 years since my annual mammogram in 1995 showed highly suspicious areas not seen the year before. I was overbooked into the breast care clinic at the University of Michigan a few days later for a biopsy and subsequent evaluation where the consensus was that I was starting another hard year.

Fast forward 13 years. Yesterday, during my now once-a-year visit to my oncologist, which has been a mostly "social and/or advocacy visit" during the past several years, he and I discussed appropriate follow-up care from this point forward. He congratulated me on my success :-), and we talked about how my medical care could be handled most appropriately by my primary care physician and other health care professionals on my team of docs.

It was a special day, and I tried to focus on the success. However, I was very aware of the need for my extensive "team of docs" because my oncologist strongly recommended that I contact my cardiologist immediately to discuss the dosing of one of my medications.

I won't go into "boring details" but suffice it to say that I am at the leading edge of full understanding how childhood cancer therapies impact long-term health and functioning. I do have cardiac problems related to the radiation used to treatment my childhood cancer, which are likely compounded by the two rounds of chemotherapy I have received also.

The link to the title of this posting will take you to an article written in the recent NCI Cancer Bulletin describing the importance of full follow-up care of pediatric and adolescent cancer survivors, not just immediately for important educational, employment, and/or other social concerns, but long-term, meaning very long-term, for the appearance of medical concerns that may take decades to show up. Data being gathered on long-term childhood cancer survivors have shown that ~70% of survivors have at least one chronic health condition related to their cancer treatments such as premature heart disease, with women having higher risk than men, particularly for breast cancer (like me, twice).

(1) If your child is currently receiving cancer therapy, ask how long-term follow-up will be provided. Ask for copies of the clinical guidelines available for appropriate monitoring and/or screening depending on the type of cancer and the type(s) of treatments.
(2) If you are an adult survivor of a childhood/adolescent cancer, I urge you to make sure you have a primary care physician that you see for annual physicals and discussions of your health concerns with whom who feel comfortable and confident having in-depth discussions about your health. Gather as much information as you can about your cancer history to share with your PCP.

I highly recommend reading the book Childhood Cancer Survivors: A Practical Guide to Your Future (Childhood Cancer Guides), 2006, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione as an excellent source to start gathering an understanding of your medical needs with up-to-date and accurate information to help guide your doctors with appropriate follow-up care. You may get lucky and find a PCP who has a special interest in following cancer patients long-term and thus may already be aware of some of their unique health concerns, but chances are you will need to become your own advocate and help educate your PCP about appropriate follow-up. Keene's highly regarded book will help you do this.

Our snow is almost gone yet I still have not heard any robins singing in my neighborhood. However, I do hear them "chirping" and "chortling" constantly, so I know they are here. Friends and I are going to welcome spring with a celebration on Friday night that will feature some "spring chicks". I'll take lots of photos and let you know how we celebrated, even if the robins are not yet singing!

Welcoming spring with good wishes to all for another year of good health, healing, and hope!

Diana Dyer, MS, RD


michigan_herrs said...

Thank you for caring about children who survived cancer. I am looking for information about nutrituion for my son and am having difficulty find it.

Anonymous said...

Hi there,

I wanted to invite you to join a group of 2000 of us, individuals and organizations that have all come together to form a united voice to create awareness of childhood cancers....our name is People Against Childhood Cancer (PAC2). We also have a petition to create awareness of childhood cancers which, in about 6 months, has over 19,000 signatures.

Here is the link to our group site and petition.... PAC2

Thank you.

Kathi Clarke