Thursday, June 20, 2013


I don't know why I'm doing this.  I've already established my issues with celebrities using their voices when it comes to illness.  Their own illness.  To comment on someone else's choice, unless you are a doctor, best left alone.  A simple, "She made the choice that was right for her."  Leave it there.

Yes, we are back on Angelina Jolie and the comments made by Melissa Etheridge stating that the choice made by AJ was not a brave choice.

This is exactly what ME said in her interview with Washington Blade:

"I have to say I feel a little differently. I have that gene mutation too and it’s not something I would believe in for myself. I wouldn’t call it the brave choice. I actually think it’s the most fearful choice you can make when confronting anything with cancer. My belief is that cancer comes from inside you and so much of it has to do with the environment of your body. It’s the stress that will turn that gene on or not. Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do and to really consider the advancements we’ve made in things like nutrition and stress levels. I’ve been cancer free for nine years now and looking back, I completely understand why I got cancer. There was so much acidity in everything. I really encourage people to go a lot longer and further before coming to that conclusion."

Yes, that statement created a media uproar that I missed.  Apparently Brad Pitt made a comment and I have NO idea who else jumped in to the fray.  The follow up comment made by Melissa Etheridge says the following:

"I don't have any opinion of what she 'should have' done. All are free to choose. I only objected to the term 'brave' describing it," Etheridge said in a statement to ABC News. 

That's the end of the war of words.  And here are my observations (did you seriously think I would not express an opinion??).  This has nothing to do with AJ's choice or ME's opinion.  It has to do solely with the statement that is in print for all to see.  My objection isn't over bravery or fear (although I do fall on the bravery side of that equation if you are interested).  I'm not going to comment about whether or not that initial statement confers an opinion on the part of ME (all I'm sayin' is read it carefully and you decide).

Let's be clear.  Melissa Etheridge is a musician.  Angelina Jolie is an actress.  Fans tend to hang on to their words.  As a responsible advocate who understands the importance of evidence based medicine not opinions or things that seem likely, I am going to address the comment.

  •  "My belief is that cancer comes from inside you and so much of it has to do with the environment of your body"  (Yes, I agree-tumor microenvironment or as Dr. Love says, "the neighborhood")
  • "It’s the stress that will turn that gene on or not." (ABSOLUTELY NOT TRUE not matter how much you may think this is the case, there is no evidence to support such a statement although the importance of reducing stress can not be understated for plenty of reasons.  Activating a mutated BRCA gene to turn on is NOT one of them.)
  • "Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do" (GROSS MISREPRESENTATION of the very real risks associated with a BRCA mutated gene.  The risk in the general population is 1 in 8 at age 70.  BRCA mutated patients?  6 in 10 [and earlier onset?].  In other words, the risk is five times greater in patients with BRCA mutations.)
  • "and to really consider the advancements we’ve made in things like nutrition and stress levels."  (Stress, previously discussed.  Nutrition?  This is sounding like the blame game.  There is NOTHING we can do to eliminate risk through nutrition or by avoiding potential environmental factors that may be within our control, like for example, moving far from a city where the air is less polluted. These measures will only reduce the risk by a very small percentage.  I have many things swirling in my head regarding numbers so I'm going on the high side. I think we are in control of perhaps 30% of our cancer risk across ALL cancers through behavior modifications. The rest?  A crap shoot.  And not with such great odds if you happen to have a mutated gene.  And medical advances, treatment options, chances of metastases... not much has changed in decades.)
  • "I’ve been cancer free for nine years now and looking back, I completely understand why I got cancer." (Really???? Did she REALLY SAY THAT????  Yes, she did.  I'm fairly certain her understanding would be appreciated by the thousands of researchers who have yet to crack that code.)
  • "I really encourage people to go a lot longer and further before coming to that conclusion."  (No.  What you should be doing is encouraging people to do their homework and make the choice that is right for them.  This sounds like she may not be telling AJ what she should have done as she states in her rebuttal comment, but she IS telling the rest of us what she thinks WE should do.)
And, if you make the same decision as AJ, you will be doing so because you made the most fearful choice, not the brave choice.  I suppose I am a big coward, but I can assure you, I made my fearful choice based upon lots of thought, lots of questions and lots of research.  I found my notes from 2006 when I was looking for the copies of my BRCA results that I'm submitting (along with my saliva) to a researcher as part of a clinical study.  I think they were pretty good questions for someone who didn't know a damn thing about breast cancer aside from the fact that my mom was treated in 1987 and it sucked.  I was an e-Patient before I knew what that even meant.  Engaged, Empowered.  What I'd call the choice? AGONIZING.  And, obviously, well thought out and INFORMED.  And No One Else's Business.  And this is why celebrities should keep their opinions to themselves.


  1. Very thorough breakdown, and many of your points had me nodding. These are clearly her deep beliefs, and everyone is entitled to their beliefs - but you later point sums it up so well: choices are a personal matter, and in these cases we ought to respect that.

    1. Yes, we all must do what's right for us. Hopefully, we are making educated choices using evidence based information. I'm all about "Show me the data" to steal the line of a doc at MSK! I think that's fairly obvious in 5 sheets of paper that basically repeat many of the same questions and concerns in 12 different ways!!!

      And absolutely, we need to be respectful of the choices of others... AND, watch our words. Words matter and in this case, those words, although directed at AJ, on some level, were directed at every person who made a similar choice. I can even agree that my decision was based in fear but it takes tremendous courage to choose something so drastic knowing, as I believed for my own circumstances, was the right choice FOR ME.

      You are always mindful of your words and that is part of what makes you so special to me!


  2. dear Annemarie,

    your post brings both clarity and truth about the comments of me, and I am so grateful you took the time to factually and respectfully rebut her remarks. me probably won't change her mind; but you provide excellent guidance, backed by the science you researched, so that one day, if any of your readers are forced to make the decision for mastectomy or other modes of dealing with the risk of BRCA mutated genes, they will be empowered to do their own due diligence - then make the choice that is right for them. it hurts my heart to think of how remarks like those of me could affect other cancer patients who have or are struggling with these issues. we so need voices like yours to set the record straight and fully support them.

    love, XOXOXOXO

    karen, TC

    1. Karen...

      I ALWAYS cherish your words and I so appreciate that you can read my mind when I put things on paper. You've explained, perfectly I might add, my reasons for writing this post. Whenever anyone in the public eye who doesn't have a medical background steps out and makes firm statements like "stress will turn on the gene" .... I fear some will read that and think if they do enough yoga or eat enough anxiety meds, they can prevent cancer from developing. I WORRY about this. I just want people to have accurate information and to speak to their doctors and listen more closely to the opinions (seeking more than one if necessary) of those who understand the evidence rather than celebrities who, for the most part, should NOT be dispensing medical advice. For what it's worth, Dr. Oz is now a celebrity. I'm just sayin'


      LOVE you.....

  3. Thank you! You put to words what was rattling around in my brain.
    I believe you speak for so many of us!
    Love, Love, Love.

    1. THANK YOU my tweetie friend! Your tweets have directed me to more things in two weeks than I would have found on my own...

      I'm not about bashing, but setting the record straight using info we know to be based in evidence? I can do that....


  4. I think I understand what ME was trying to say; though she didn't say it very well. As part of my whole process of diagnosis and treatment options I was informed of my extremely high risk profile and the need for close following because of what is seen on mammograms, ultrasounds, and MRIs of both breasts. I am at very high risk of developing bc in my other breast. A double mastectomy was an option. Rather than take the radical route, we decided to closely follow, and I decided to try to reduce my risk through diet and exercise. Why the decision? Because there are options to reduce your risk and there have been medical advancements in the diagnosis and treatment of breast cancer. Our hope (mine and my husband) is that by the time I develop something else it will 1). be caught early enough to not be an issue or 2). we will have better treatment options. Possibly even a cure.

    I guess what I'm trying to say is that maybe ME was putting forward some of these thoughts, but she didn't say it very well. Diet and exercise "do" reduce risk. One of the risk factors for cancer listed on the ACS website is being overweight. Also, the medical community has made great strides in treatment. It used to be a "one size fits all" approach. Breast cancer resulted in a mastectomy, and staging resulted in chemotherapy and radiation treatments.

    I completely agree that fully informed treatment options are the only way to make a decision. And any decision is personal and ultimately the right choice for the individual. It is not up to outsiders to second guess. What is right for AJ or ME was not right for me and it's nobody else's business.

    1. Thank you Heather!

      I agree with every single thing you said and I'm banking on some meaningful advances in development of better ways to treat those of us who will develop breast cancer, those whose cancer metastasizes and most especially, those who have already metastasized. I think we are at a turning point and I HOPE I'm right. Point very well taken about making decisions today for a future "maybe" especially when one considers the fact that breakthroughs can be (are?) within our grasp.

      It's so important for us to be mindful of what you wrote in that last paragraph and to be respectful of the choices others have made. I cringe when someone shares what I think is a wrong choice but it's an internal cringe and I offer my unconditional support (Unless it involves apricot pits or coffee enemas..then, I'll open my mouth because I have no filter where it involves things that have no evidence to support and people are being taken advantage of at the most vulnerable time in their lives)

      Diet and exercise is important but for ME to say that stress caused her cancer is completely unfounded at this point in time. In fact, I was JUST at a presentation and there will be findings published about stress as it relates to a first cancer diagnosis v a recurrent cancer. Compelling connections were found relating stress to recurrent disease but no such link was established in triggering initial disease. I'm waiting for the publication so I can read the study design. I will say, the researcher is prominent but still..... until I see it....

      My point? To imply that she knows what caused her cancer and that stress turned on the gene flies in the face of any medically proven evidence. There are brilliant minds trying to establish these cause/effect relationships and they haven't been able to show this. It worries me (not good for me to worry if I'm stressing out over it!) that people will walk away blaming themselves for their disease.

      Following a healthy lifestyle is so important and yes, it all helps reduce risk. As of now, however, at least 70% of cancer that develops does so for reasons completely beyond our control. It may be higher for some cancers and lower for others (ie-smoking considerably reduces risk of lung cancer and many other cancers too, but the greatest benefit is seen for lung cancer).

      So many people read headlines and hang on to the words of "famous" people which is why I disagree with ME's statement. Celebrities should stick to their craft and entertain us and let the doctors and scientists discuss the medical stuff.

      Just my two cents....


  5. I love your copious notes, illustrating that patients often don't make fly-by-night decisions! Good for you -- BRAVO -- for writing this post. I strongly dislike (OK, hate) the whole "cancer comes from within" rhetoric. There's a blame the victim tone here. I am wary of anyone who believes he/she knows where cancer comes from. I look back at my life and see many things that might have caused cancer, but we really don't know much. Thank you for once again dispelling myths in favor of the truth!

  6. As always, great post! Thank you. No one "knows" - and if they say they do, I tend to think they are fools.

    And I love your notes. I recently came across a bunch of my notes from the early days (way back in 2001). Pretty interesting to read through my thought process as I tried to to be a good student in my crash course and make sense of all this.

  7. Succintly put! Thank you.

    We do not need the R word being used, as in you are 'Responsible' for your illness. Yes! I do look at what I eat and how I exercise; I can try to avoid getting stressed too, but that doesn't mean I was responsible for getting breast cancer.

    You reminded me that I too made notes to try and make sense of it all, and see where & when decisions needed to be made and what those decisions would entail. Its strange to look back on them now.


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