Wednesday, February 9, 2011

Less is more, or at least equal

In case you're a day or two behind with 'big news', yesterday really big news regarding standard breast cancer treatment was released indicating that there is no decrease in life expectancy in women diagnosed with breast cancer that has spread to the axillary lymph system who have only a sentinel lymph node removed versus those who have had a full lymph node dissection.

This is important information for all women to know, and thank goodness these researchers went ahead with their study to evaluate "conventional wisdom", even though some cancer centers refused to participate, saying it was unethical. (I suggest reading the full article from the New York Times and/or JAMA for further information about the women included in this study and discuss with your own doctor how these results may or may not be applicable in any specific breast cancer case.)

I am glad science (and resulting medical care) keeps marching on and changing based on more thinking and understanding (someone asking "why not?" instead of just "why?"), in this case, changing to be less damaging to women undergoing this drastic surgery of removal of large numbers of (potentially healthy) lymph nodes, leaving them with increased risk of developing multiple physical problems. Even though I have been very fortunate to not have had to suffer with the development of lymphedema since either surgery (1984 and 1995), I know that it could still develop, and I am one of these women for whom neither right or left shoulder, arm, or hand function or sensation has ever returned to normal.

I have been left with limitation of the use of both of my arms (and I had to beg for physical therapy in 1995 to even get back as much range of motion and function as I have in that arm and shoulder). in addition, I had significant pain in my arm after my 1995 surgery for which my surgeon offered no post-op explanation, advice, let alone any sympathy.  Eventually 3+ years after my surgery, I casually mentioned this pain to a massage therapist (I had gone for another reason) who worked specifically with shiatsu therapy on that pain. Even though I was pleasantly skeptical that anything would help, and almost did not go back to the second appointment because the first session initially increased the pain level in that arm, I burst into tears during the second session when I could actually feel the pain traveling down my arm, leaving my body through my fingers, never to return. I still have all the same movement and sensation limitations I had developed post-surgery, but at least I continue to be pain-free, which has been a huge quality of life improvement.

Oh my, that experience sealed the deal with me to be forthright in saying our 'conventional medicine' as practiced here in the US knows just the tip of the iceberg about how the body works, how the body heals, and how to prevent or treat illness with minimal 'collateral' damage and in a manner that takes into account a person's humanity.

I share all this not for sympathy but to share a real life example of why this finding is important, why the research itself was important, and to say thank you to the researchers who initially questioned the conventional standard of care and pursued the study (in spite of challenges) in order to provide data that will now allow more humane treatment for many women diagnosed with breast cancer without sacrificing long-term life-expectancy.

I have just received a copy of all the research projects being funded by The American Institute of Cancer Research (AICR) for 2011, from among which I will choose the one where money from The Diana Dyer Nutrition for Cancer Survivors' Research Endowment at AICR (funded by proceeds from the sale of my book A Dietitian's Cancer Story) will be focused. I have not even glanced at them yet, they are always all very interesting, but this year I think I will look at them thinking which one is asking "why not?", i.e., which one is questioning standard of care. Of course, since for so long the lack of nutritional care during and after a cancer diagnosis has been considered the standard for cancer care, it is likely that all of these studies could fit my thinking this year!

No, no, I'm not a cynical person, in spite of how that last sentence may have sounded! I'm always looking forward with hope and action. Hopefully (hope), you or someone you know will be able to put this information to use (action), too. My endowment was founded for those two reasons. :-)

"Cultivate your life - you are what you grow - inch by inch, row by row"

Diana Dyer, MS, RD


Anonymous said...

Thank you for putting this out there so that women can be reminded that there are options, and they need to insist upon exploring each one before making any treatment decisions. I might be facing that situation myself soon (but hoping my tests come out negative!), and appreciate your book, blog, and continued efforts to empower women by sharing your story.

Elaine said...

Thank you for sharing more details about your personal story, Diana. I'm learning more about how strong, courageous, and generous you are.

I, too, admire investigators who ask "why not". And although I have to read new and information-dense articles regularly, think critically & consider how to translate theory to practice, (phew, lots of heavy thinking) I too am glad science "marches on". Colleagues like you are so helpful in highlighting important findings.

I'm so happy you found relief for your pain. Today's unconventional therapy may be tomorrow's standard treatment.

Anonymous said...

Diana, Thank you for this. Yesterday I attended the TedX Manhattan viewing sponsored by Slow Food Huron Valley:

One of the presenters shared this video as well as a question and answer session on anti-angiogenesis -

William Li: Can We Eat to Starve Cancer

I am very encouraged by your blog and learning about how I can take steps to minimize my genetic disposition toward cancer. Thank you for sharing your hope, knowledge, and experiences!