Friday, August 14, 2009

My response to article about dietitians for cancer patients

The Utne Reader published the following article earlier this week. I only saw it this morning. In many ways, the author of this article did thoughtfully highlight some of the difficulties of incorporating reliable nutrition information into true comprehensive cancer care.

Well, I could not let this just hang out there in cyberspace without a few comments of my own! :-) Unfortunately, my on-line comments were truncated, even though there was no indication of space/character limitation on the comment page. So here are my full comments for your reading pleasure. If you are one of my long-time blog readers, or have heard me speak in person, you will have heard all these words before, and I can even see you nodding your head a little as you read them, with both agreement and empathetic understanding. :-)

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The positive in this article is that a cancer patient is proactively seeking out reliable nutrition advice as a necessary component of his personal approach to true comprehensive cancer care.

However, as both a registered dietitian (RD) and a cancer survivor, I can assure the author and other readers from my own experience that navigating the scope of nutrition information and misinformation available to a cancer patient today is mind-boggling and stressful, complicating an already highly stressful situation. The stress is compounded when a person has to try to seek out helpful (and reliable) nutrition information on their own, as I did because there was no RD at my cancer center in 1995, plus has to balance the pros and cons of information from multiple sources (i.e., friends, relatives, co-workers, strangers, the 'wide-open-west' of the internet, and various health care professionals).

What is it going to take for all people diagnosed with cancer to not feel they need to take this aspect of care into their own hands but instead have a nutrition status assessment and appropriate advice included as an automatic component of their cancer care, done pro-actively and individualized to a person's own cancer, stage, anticipated nutritional consequences of the selected cancer therapy, while first taking the patient's prior medical history into account and then helping the patient identify and prioritize short-term and long-term nutritional goals to optimize the hoped for beneficial results of their cancer therapy plus overall health, wellness, and quality of life after therapy is completed?

That was a very long sentence but still does not fully cover what an experienced RD with the Certified Specialist in Oncology (CSO) credential can offer to an oncology patient. Yes, in addition to the importance of including all food groups in the diet along a refresher about portion sizes (that is the starting point for some people), RD-CSO's will be able to help a patient sort out the info (i.e., the research showing what's known, what's unknown) about the Budwig diet and the other promoted anti-cancer dietary approaches, turmeric and other herbs or dietary supplements with anti-cancer activity, shiitake mushrooms and other foods with cancer-fighting components, whether weight gain, loss, or maintenance is recommended, and much much more.

Nutritional care for oncology patients is very uneven in this country. Some outpatient cancer centers have RDs, some don't; of those that do, some are appropriately staffed but most are woefully understaffed; some rely on standards that an RD simply be "available" and certainly not a specialist (i.e. usually pulled from an inpatient oncology floor or even possibly other area to suddenly see a last minute, and usually complex, oncology outpatient); of those who have RDs, some centers include the professional costs of providing nutritional care as part of the "package", some require patients to pay extra; I could go on and on.

I don't yet fully understand all the obstacles (real and/or perceived) for why nutritional oncology is not yet included with true comprehensive cancer care everywhere. However, in the meantime, if you are currently being treated for cancer, don't wait for that to be figured out. My recommendation, right now, today, is to do the following:

• If you are fortunate to be receiving care at a cancer center that has an RD on staff (hopefully an RD-CSO), (1) make an appointment to see her/him or ask for a referral if needed, (2) please thank your doctor and cancer center administrator! Tell them you value this aspect of your cancer care.
• If your cancer center is one of those that does not yet have an "up to date" RD as a member of their multi-disciplinary oncology health care team serving outpatients receiving cancer therapies, speak up and ask and ask (and ask again) "Why not?". Patient voices matter. Remember, you are the customer here!

Over the past 12+ years, I have met hundreds of RDs throughout the country who work with oncology patients because they are drawn to this medical specialty and deeply care for their patients. Many (if not most) of them have had to 'fight' to get the door open to be included on the outpatient oncology teams. To a one, they are all deeply compassionate caregivers and go above and beyond to deliver the very best individualized and up to date nutritional oncology care to their patients. (Not a single one that I have met would "scold" a patient - yikes, what an upsetting experience that must have been. I'm sorry.)

Yes, by all means, seek out the best cancer care for yourself, which hopefully will include an RD-CSO at your own cancer treatment facility. Doing so is giving yourself the best odds for both extending your life and optimizing your quality of life.

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Inch by inch, row by row, progress is made, however, much too slowly for the 1+ million newly diagnosed cancer patients each year in the US alone plus all the millions and millions of cancer survivors. Please add your voice and speak up at your cancer center, either to say "Thanks!!" if you are one of the fortunate patients whose comprehensive cancer care included nutrition or to ask, ask, and ask again "Why not?" if your cancer care is still not truly comprehensive.

Please consider being part of the effort that is improving cancer care. I deeply thank you and so will all the patients that are still to be diagnosed.

Diana Dyer, MS, RD

2 comments:

Jen of A2eatwrite said...

Since I have not yet had the chance to hear you speak on this, Diana, I found your comments illuminating. I know that in my father's battle with cancer, nutrition ammunition was one of the ways he was able to fight as long as he did. He felt it was an absolutely integral part of his treatment.

KT said...

Diana, very powerful words! I agree with you, cancer patients (like me) don't have time to do all this research themselves. I wonder if we have an RD-CSO available here in Richmond VA?

I am considered "terminal" at this point but haven't given up hope and am looking into alternative medical treatments. At the very least I'd like to get my immune system in order, and to stop the growth of the cancer would be a wonderful outcome too.

I found a doctor who has had success with patients like me. He's in Charlottesville VA (1+ hours from here) and is a "natural" doctor (not sure what to call him, he is a medically certified familly doctor but also has studied homeopathic/natural methods of treatment and nutrition) and had a long phone conversation with him Thursday. He started me on some supplements for strengthening the immune system and ceasing cancer regrowth, but he is also very interested in learning my medical AND emotional histories. I actually have homework (a term paper of sorts, to answer his many questions about my medical history plus describing my personality, moods, reactions to different situations,etc.) before I meet with him personally!

Anyway, this last post of yours opened my eyes to the benefits of this approach. And to the benefits of having an RD-CSO in town. I will check at my cancer center, to see what they offer.

Thank you,
Katie