I was very disappointed with your story last night on NBC News about an obesity study and breast cancer recurrence. (http://video.msnbc.msn.com/nightly-news/48807195/#48807195)
Most people do not understand risk factors and I would have expected you, as a journalist and doctor, to put it into context. The American Cancer Society says: “Risk factors don’t tell us everything. Having a risk factor, or even several, does not mean that you will get the disease. Most women who have one or more breast cancer risk factors never develop the disease, while many women with breast cancer have no apparent risk factors (other than being a woman and growing older). Even when a woman with risk factors develops breast cancer, it is hard to know just how much these factors might have contributed.”
So this study showed a 25% increase in risk of recurrence if you are obese. That means in laymen terms, that if the recurrence rate is 30%, then obesity will increase your rate to 37.5% (which is a 25% increase in the rate) So instead of 3 chances in 10 of having a recurrence, an obese woman has 3.7 chances in 10. How many times now will we hear people say–she was fat, so that’s why the cancer recurred—or much more often: she wasn’t fat, so why?
Too much emphasis and story time is spent on risk factors. Most people would be surprised to know that only 15% of those with breast cancer have a family history and less than 10% have the BRCA mutations. Isn’t the real story to be reported this: The vast majority of early stage breast cancer cases and later metastatic recurrences, (which are deadly), happen without researchers knowing why?
We in the metastatic breast cancer community are bracing for October which is a grueling experience for us, with the media concentrating on prevention and early detection, placing the burden on patients to prevent their disease, and, once they get it, to be happy, proud, fighting ‘survivors.’ How about an honest story of those of us living with metastatic breast cancer who had their mammograms, ate well, exercised and had positive thoughts and still got metastatic disease? Or an honest story about research (or lack thereof) into metastasis, (cancer spreading or metastasizing to vital organs), which is the cause of breast cancer deaths.
We’d be happy to talk to you if you’re interested.
Sincerely,
Ginny Knackmuhs Metastatic Breast Cancer Network (MBCN) g.knackmuhs@mbcn.org
MBCNbuzz 
Wonderful letter;says what I think .
I just doubt the dr or anyone will pay attention;stage IV is just ignored by media and everyone else. Sad,but true
Reblogged this on ihatebreastcancer and commented:
Ginny takes exception to Dr. Nancy’s report on an obesity study and breast cancer recurrence. Asks Ginny: How about an honest story of those of us living with metastatic breast cancer who had their mammograms, ate well, exercised and had positive thoughts and still got metastatic disease?
You go, girl!
Excellent post, Ginny. Thank you.
Amen! Enough with the pink boas and inspirational stories…let’s get the REAL word out there…early detection is not the end all be all and risk factors are a bunch of B.S. Women are dying of breast cancer at a frightening rate and we need to get everyone educated to the realities of metastatic breast cancer. I fell for the early detection comfort zone…until I was diagnosed at Stage IV initially after years of mammograms AND sonograms. Yes, I am chubby and yes, I enjoy a glass of wine…that’s not the point…we need to find a CURE!!!!!
Go, GINNY!
Sending hugs across the island to you….
xoxox
thanks, all, for your comments and reposts. Pinktober starting early, but we can’t let them get away with this skewed reporting. It’s going to be a long Fall season!
Cheryl and Colleen
I don’t think we’ve met, but I appreciate your comments.Please take some time and send us your story. We want to feature 31 days of mbc stories in October. Every little bit helps to get us media attention. Send your story to mbcn@mbcn.org and we’ll help you edit it and get you started, if you need it. Many thanks!
According the the CDC in America:
“In the United States in 2007 (the most recent year for which statistics are available), 202,964 women were told they had breast cancer, and 40,598 women died from it.”
Since we haven’t made much progress in the death rates, that tells me that approximately 20% of all breast cancer cases will turn in to MBC and death. That tells me 1 in 5 women who get breast cancer will eventually get MBC and die from the disease. (For men its about 2000 cases and 400 deaths).
When the press wakes up and sees that in the US, one woman dies every 14 minutes from MBC maybe they will wake up and start reporting the truth.