Another Celebrity Miss

Oh geez, here I’m about to go again.

I haven’t previously attend the #BRCA chat on Twitter.  It’s at 9pm on Thursdays and that is just too late for this mama (usually that’s the time I’m falling asleep while watching Project Runway).  But last night I could not resist since I knew, from the BRCA Commons Facebook Group, there was a chance that Melissa Etheridge might show up.  Now, I don’t really follow what ME has to say about BRCA the same way I obsessively follow Angelina Jolie.  I’m doing a research project on AJ, so I kind of have to be following what she says and what’s said about her.  To be honest, I heard what ME said about AJ after her prophylactic surgery (that her choice was “not brave” and in fact “fearful) and basically I stopped listening after that.  So I’m not incredibly informed about her views about BRCA.  It doesn’t seem like they have evolved much since then. My cousin just told me that in a very recent AARP article, ME said that her breast cancer “was of my own doing, and I take responsibility, ” and, “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on or off. I turned my gene on with my very poor diet.”

Of course, those participating in the #BRCA chat don’t take this type of comment lightly, although they treated her with so much restraint and respect when she deserved such a smack down for that bullshit – BRAVO community!  I’m proud of us.

My suspicion is that the common response to these comments is that ME is simply misinformed. We know (from science) that genes are not turned on and off.  Our community is concerned that ME is spreading this misinformation.  I’m guessing that another common response is that ME’s comments are insulting.   She insinuates that those of us who have been diagnosed with cancer are at fault!  I ate french fries and missed a few days at the gym, therefore I gave myself cancer.  I deserved it.  Wow – thanks ME.  Because I didn’t feel badly enough.  I know the main response to ME is that she is using her celebratory platform in the worst way – she could be doing so much good for the BRCA+ community and instead she is misleading people.

One response that I don’t really see has to do with guilt.  Guilt is a major reality in the life of a previvor; we feel it in a lot of ways.  We feel guilty that someone else had to suffer or even die from cancer so that we could learn that there is a mutation in our family.  We feel guilty that family and friends have to take care of us while we recover from surgeries.   We feel guilty that we might have passed a mutation down to our own children before we knew of the mutation (my father feels this guilt every day, regardless of how often I tell him that he shouldn’t).  I know I feel a lot of guilt – I got pregnant and had my child even knowing of my BRCA2 mutation and my husband’s BRCA1 mutation.  But at least I know one thing for sure:  I got DCIS because of my genes – I had a 50% chance of getting that gene mutation, and I just got unlucky.  It had nothing to do with what I ate, nothing to do with how I treated my body.  I also have Rheumatoid Arthritis, and I’ve asked my rheumatologist that question too – did I do this to myself?  Nope.  Just part of your physiology.  Could’ve been a virus, could be genetic.  No one knows.  But it is not my fault.  And it is not ME’s fault either.

What’s the major take away here?  I hope Melissa Etheridge has a good therapist because that guilt she must carry – thinking she gave herself cancer; it was her “own doing” – that must be an unbearable weight.  I am so glad that the previvor community knows better than to listen to her crap – the last thing we need to be doing is blaming ourselves for losing the 50/50 chance.

More importantly, I remembered that I love communicating with the #BRCA community.  I will definitely be making the chat a more regular part of my schedule.  It’s such a great community of wise, generous, humorous, and insightful people, and it’s worth the time to talk to them – even if I have to DVR Project Runway.

Thanks to Andrea Downing of BraveBosom, here’s the transcript of last night’s #BRCA chat with Melissa Etheridge.

Advertisements

9 comments

  1. I missed the chat. I didn’t even realize there was a #BRCA chat. Where have I been? I will have to try to make it from time to time now that I know about it. ME has rubbed me the wrong way due to some other things she’s said about cancer, something along the lines of that whole cancer is a gift notion. Enough said. Enjoyed your post. Thank you for writing it.

  2. She responded to me with regards to the open letter I posted on my blog. I tried to respond to her in a way that was not defensive or rude, but she is very much convinced that genes can be turned on or off. What is more upsetting now, is I get notifications every time someone favorites her tweet to me and it’s alarming how many of her fans are doing that. I feel so concerned that they believe what she’s saying when there is no scientific evidence to back it up!

    1. I don’t think she was replying to what anyone said in the chat. I think she had an agenda – to make sure we heard what she’s been spouting in other forums for the last few months. And once she got those words out, she left. Plain and simple. I’m sure she wasn’t even reading what anyone was saying in the chat.

  3. Setting aside Melissa Etheridge for a moment (who seems to have been conned by a particular strain an older and damaging superstition that encourages people to blames themselves for all their illnesses), what are your views on the role of diet, exercise, environmental pollution, etc on BRCA carriers? I think about this a lot. As a BRCA1 carrier, I know that my biggest risk factor is my mutated 17th chromosome. And there’s nothing I can do about that! But it is also a medical fact that a healthy lifestyle (which is something we each have some control over) supports the immune system – even the immune system of a BRCA carrier – and that at a population level women who eat healthily and take regular exercise have lower cancer rates. (Of course, we all know super-fit women who are diagnosed – I’m talking about stats at a population level.) Eating healthily may not save me from cancer forever, but has it played a small role in my continuing cancer-free status? I don’t know! Other BRCA1 members of my family have had breast cancer diagnoses at younger ages than I am now. Has diet played some small part in this? It is possible that dietary choices made by my parents when I was young and by me as an adult have helped. If so, I would love us all to be given this information. My three-year old niece may be BRCA1 and if there was medical evidence suggesting that BRCA carriers who maintain high vegetable and fruit consumption and/or low meat and dairy consumption or low refined suger intake tend to have lower cancer rates or later diagnoses I know my niece’s parents would want that information. Is this how you see it, too? Or no?

    1. I honestly have no idea – I don’t think there’s a lot of scientific evidence to support that a good diet can prevent recurrence for BRCA carriers. And I don’t think there’s a way for scientists to really prove causation between a good diet and prevention of a first instance of cancer. Perhaps they are working on this sort of data though. I’m sure we all know though that it can’t hurt to eat well!

    2. I tested positive for BRCA II earlier this year, as well as my younger sister ( age 37) who was diagnosed with breast cancer, stage I. She is fighting for her life as she also has Sickle Cell Anemia, not a great combination. I’m 44 years of age and I often wonder if my lifestyle is the reason cancer was delayed for me. I’ve been an avid runner for years, eat fruit/veggies and rarely consume red meat. My daughter will be 18 soon and wants to get tested. My worst nightmare is for her to test positive. She stays active and eats pretty healthy to so I to, @geneticgrrl, would love to know of any medical evidence that will delay/prevent cancer due to lifestyle. I’ve lost many family members (men and woman) to cancer, but one thing they had in common was smoking and not the best eating regimen. My deceased family members were older and did not have the option of genetic testing. I sometimes wonder which relatives actually had the mutated gene, due to an article posted in Women’s Health titled Just In – Mixed Signals stating “Woman who have tested negative for the BRCA gene mutation but have family members with it are still four times likely to develop breast cancer than the general population is, reports a study in the journal cancer Epidemiology, Bio Markers & prevention.”

      I made the decision to have my reproductive system removed as well as my breasts. I’m scheduled to have my exchange done 12/1/14. I feel a sense of relief, but I’m often targeted negatively because of my decision. I felt alone at times so I am grateful to have found your blog, @bsf, where I can interact with the BRCA community. I am a Black American woman and often I am told by people who look like me to pray and let GOD. Great, but GOD has given us the tools to succeed via medicine/scientist for a reason. It’s never an easy decision to remove body parts, but my percentages were too high to sit and ponder. Before I made the decision to undergo surgery, I visited many chemo patients with the mutated gene that basically conveyed the same message to me “Don’t wait!”

      1. Thanks for your comment and for reading. There are lots of other places where you can connect to the BRCA+ community. There are FORCE message boards (facingourrisk.org), as well as lots of Facebook groups: BRCA Sisterhood, Previvors, Young Previvors, BRCA Commons – all great groups to join – and I wouldn’t be surprised if there is a BRCA Group for Black Americans as well on Facebook – or maybe you could start one! I’m no medical doctor, but I would say that there is obviously no harm in eating healthy and staying physically fit. But I haven’t heard of any scientific research that is able to prove any connection between physical fitness/diet and delaying or mitigating breast cancer. Good luck with your upcoming surgery!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s