Thursday, August 21, 2008

alternative thinking

I'm not sure where to start with this post. About a year ago I stumbled upon this book called crazysexycancer tips. You may have seen Kris (the author) on Oprah - she also did a documentary on TLC (I think) entitled crazysexycancer. It was basically her story about having an incurable, indolent cancer and learning how to make herself as healthy as she could, and live WITH cancer. Though I don't always agree with everything she writes (she's a big advocate of raw foods, juicing, complementary/alternative meds, etc), I like her attitude and think she's a positive person. She has a website, sort of like a web community, and I've been part of it for probably about 6 months now, or something like that....and it's getting harder for me to digest much of what is written. Many of these people have cancer, or have a family member with cancer, and are big proponents of CAM (complementary/alternative medicine). Don't get me wrong, CAM has its place - in conjunction with Western medicine. But when a chemo patient is posting that their oncologist told them to stay away from raw food and other people are telling this patient "no, it's fine, don't listen to him", I feel the need to step in and say, there's a reason he told you that - your immune system is decimated by the chemo and you need to minimize your chance of infection. PLEASE talk to your oncologist about it. Needless to say, much of the time, this is either ignored or debated. I feel like many of these patients aren't talking to their oncologists, and it's worrisome to me. One woman posted about having a mastectomy last week and she is trying to decide whether or not to do chemo. Cancer was also found in her lymph nodes. She was exploring "alternative" treatments. It took all my willpower not to post anything, and just to close the screen. Of course, it's an individual choice about whether to do chemo. But one of her reasons was watching her mom go through it decades ago for Hodgkins. Things are much, much different now - yes, I will fully admit that it's still a toxic experience and we need more body-friendly treatments, but for now, it's the best we have. I just worry about patients like this because, like I saw at the breast cancer conference back in Feb, when someone is really, really sick, they'll grab onto anything that provides a kernel of hope. Anything. And when someone posts about how they "cured" cervical dysplasia with their diet, or how vaccines are bad, or how they won't even eat fruit because of the sugar and so forth, it's really hard for me to read this with an open mind. 
As I progress further and further in my academic career and down the path of my journey in oncology, I'm beginning to want more empirically-based information, more info backed up by hard facts. I don't know........I guess maybe I'm torn between being cynical and being hopeful. 

6 comments:

Lindsay said...

I know what you mean. I started really thinking about my diet and wondering if I caused this cancer. But I could never give up fruit...one of my favorite foods! And many are against meat, and I don't eat tons of it, but it's what helped me gain back my weight after surgery, when I lost almost 15 pounds and was TINY. I just try to eat balanced. I think it's a great site, but I could never be so devoted to being raw...I enjoy food too much.

Obsessedwithlife said...

Jaime-
I totally agree. I have thought this for a long time about the CSC movement. I think there's a lot of good but a lot of extremes there too. I think that when curing any disease, there should be a mix of medical doctors and some alternative stuff (or whatever works for the person). I think that the false hope thing is bad too.

I have learned about some great foods from the CSC stuff and other things but I cannot go that extreme-it would be restricting my life too much and one has to find a balance between both.

R

Ned said...

Just found your blog and I totally agree. I am a 12 yr Hodgkins Disease survivor. It has been a long haul...we need more people like you! ned (No Evidence of Disease wink, wink)

Anonymous said...

Great blog, Jaime! I would be one of the first persons to say that all too often physicians don't give credence to what a patient "knows" to be true about his/her own body and the way it reacts, even when that may differ from information in medical textbooks. To totally ignore conventional wisdom and treatment, however, is another story. It's my view that many/most people need to more carefully discriminate between quality information and junk information and give it proper weight when they research and try to self-educate, in order to best take advantage of accepted courses of treatment while simultaneously keeping an open mind to the alternatives. It is very frustrating when valid research information is unavailable.

My sister is a proponent of a physician's alternative medicine web site that often leaves me shaking my head. To me, an adult ought to have ultimate control in making his or her own lifestyle and treatment choices even when others may not agree. It is when a person is making those decisions for a minor child, or are trying to influence the decisions of others, that this subject becomes seriously concerning. You may take some commentary heat from the crowd, but if your head and heart and formal training tell you that bad information is being tossed around in someone's blog, please don't be afraid to offer your own view.

Ned said...

You may add me to your list. Thanks for the invite.

Obsessedwithlife said...

ps-thanks for the link to my blog-i just saw it!!

Truly appreciate it.

-R