Tuesday, August 21, 2012

SNAKE OIL KILLS.

There was a post on this blog in December that is worthy of repeating.

Last night, I participated in my #BCSM tweet chat.  The topic was Alternative medicine and how to weed out the snake oil cures.  It was lively.  I'm willing to go out on that proverbial limb and say this may be on a very short list of most active chats to date.

Earlier in the day, I was watching a live feed from Washington DC about participatory medicine. Actually, it was about much more than that BUT that was the part that most interested me.  That, AND the talk about science based medicine and evidence based science.  It was interactive and I was following a twitter feed as I was listening.

Technology is quite awesome.  I was able to watch (now on a very large "Smart TV" that connects to my wireless internet) and I was able to tweet out some of what was being said to anyone who could not see the feed.  The panel of speakers was impressive.  Among them?  Dr. Otis Brawley who is the Chief Medical Officer for the American Cancer Society.  I saw Dr. Brawley at NBCC.  He is an informative and engaging speaker.  The absolute highlight of my remote attendance in that session?  I sent a question via twitter and at the very conclusion of the program, the question was read and discussed by the panel in Washington.  From MY den via my laptop, to a microphone addressing a room filled with conference attendees and to the other 600+ people in 7 or 8 different countries.  That, my friends, is what social media is able to do.  That is how social media WILL change the world.

Back to Otis Brawley.  During his presentation he began to talk about an interview he did with Larry King.  When he mentioned he was having a discussion on television with a "certain blonde actress" who was selling snake-oil (don't go screaming at poor Otis... those are MY words), I had to smile.  My friend, Xeni just made a brilliant statement in a blog she wrote.  "I think people who sell fake cancer cures are murderers."  Well, Xeni.... I KNOW that people who sell fake cancer cures are murderers.  They prey on those who are at quite possibly the single most vulnerable and frightening moment in their lives.  They prey on that fear knowing some may grab at ANYTHING.  They ARE murderers.

And the blonde actress?  Suzanne Somers.  I'm not a fan of her snake-oil.  Here was MY take on the damage she may have done pitching her bill of goods.  Originally Titled "Taking Advice From A Celebrity May Be Bad For Your Health," this first appeared on December 15.  I still stand by every word.


Here’s my disclaimer.  As I sit here putting my thoughts on paper, the television show has not aired which may be a good thing.  Or not.

Tomorrow, Suzanne Somers is going to appear on Doctor Oz to discuss the “revolutionary surgery to rebuild her breast.”  Let me start by saying I think Suzanne Somers looks absolutely stunning.  She is drinking from the fountain of youth and despite some tragic life events, her smile lights up the stage.  She has an infectious laugh.  I like Suzanne Somers.

However, (you knew there would be a “but”….. ) I hope that people don’t get too caught up in whatever she is going to announce on television.  I don’t remember precisely when Suzanne Somers was diagnosed with breast cancer and I did not closely follow her treatment choices.  I could do a quick internet detour to speak specifically about that but I would be missing the most important point.

I am an actively involved patient.  I’m Inspector Clouseau heading up my own version of The Pink Panther chasing down whatever I could find about my disease, which, fortunately, impressed or more likely, amused my medical team.  I was asking my oncologist about testing my tumor “biology” to determine if chemotherapy was necessary way back in 2006.  Fortunately for HIM, he knew exactly what I was talking about or he would have been replaced.  I can’t know more than my doctor about the newest treatment advances.

The flip side?  My doctors, while I expect them to be at the forefront of everything new in breast cancer treatment, cannot and do not know more about my body than I do.  I ask questions and I take notice of things in my body.  That is just the collateral damage of a cancer diagnosis.  You are all nodding in agreement.  I know.  We get it.  Let the doctor tell me if that pain has to potential to be “something,” or more than likely, is “nothing.”  I’m not a hypochondriac about this either otherwise I’m fairly certain I would have been asked to find new doctors.  Or the more realistic scenario, I would have been treated somewhat dismissively and most definitely would be known as “The Obnoxious Patient.”

Calling the oncologist twelve days in a three week period freaking out about a headache is a very nervous cancer patient (understandably so) or a hypochondriac.  My job, however, as my own advocate is to bring (in this example) the headache to the attention of my doctor and to have my concerns addressed promptly, properly and respectfully.  I have a right to expect answers or explanations.  When I call with the same issue on Monday, Tuesday and Friday in a single week, I earned the obnoxious title and it’s incumbent upon me to consider any suggestions from those doctors about finding ways to manage my anxiety. 

Cancer may be a solo journey but it’s a team sport and we are the most important player on the team.  Everyone on that team should be kept in the loop with all the nuances specific to your disease and the treatment plan.  I can’t think of a WORSE place to seek medical advice than from a celebrity via a television.

Every cancer is different and one person’s magic pill is another’s poison or, perhaps even their lethal injection.  I know in my own case, if I were to follow what Suzanne preaches I would be putting myself at risk.  I can’t take hormones.  There goes my shot at her great sex life and fabulous skin.  For me, it’s a big trade off.  Am I fueling a rogue cancer cell by following her regiment?  The answer is yes.  Quite possibly, I am.

My cancer is different.  OR, my cancer is NOT different and Suzanne Somers just happens to be lucky.  There will always be those who fall on the good side of a statistic.  As I already stated, I don’t know the specifics with regard to Suzanne Somers but I do believe the majority of breast cancers are fueled by estrogen.  Slathering hormone cream or taking pills is not something I would even entertain.  Staying alive and cancer free is far more important than taking a risk because it worked for a celebrity.

I am beginning to see many retweets about the surgery that is going to offer hope to “millions of women.”  I can see this reaching a fever pitch by the time Thursday night rolls around.  The hype is beginning and it’s only Tuesday afternoon as I type this.
I did a little poking around and this surgical breakthrough is a “cell-assisted lipotransfer” which is in a clinical trial and Suzanne Somers is the FIRST enrollee.  The trial is based upon “promising results” of an earlier Japanese study.  I will let those lines speak for themselves.  I have no doubt the surgery was a success or there would be no appearance on Doctor Oz.  I am thrilled for her and I say that with deep sincerity and complete honesty.
I just hope that anyone who is a fellow passenger on this cancer bus realizes they should not be making personal decisions based upon what a celebrity is choosing to do.  My cancer is different.  Your cancer is different.
Learn everything you possibly can about your own disease.  Speak to your doctors.  Reach out to reputable websites like Is My Cancer Different.  Find breast cancer support communities in the real world or online.  Ask questions.  See what Dr. Susan Love is saying.  She did write the book often referred to as The Bible on breast cancer.  Learn how to read statistics rather than parrot a soundbite.  Talk to survivors.  Gather your information.  Make the best decisions for YOU and then, turn on the TV to see the choices made by Suzanne Somers.
I applaud any public figure whose voice will reach millions who is willing to say that all cancers are different and there is no “cookie cutter” treatment.  I am really impressed by those who take the time to explain a little about the nature of their disease to help us understand how they came to their decisions.  And I have enormous respect for those in the public eye who ask us to respect their privacy when faced with a serious health issue.  
It irks me when to hear half a story.  It irks me even more when I hear anyone in such a position make statements that aren't exactly accurate (that's another story that's already been told by bloggers far wiser than I am).  Tell the whole story or, just announce the diagnosis and ask for privacy.  I believe it is incumbent upon anyone with celebrity status to do one or the other.  Go public and tell all or go public and say nothing beyond the diagnosis.  Once you are on an interview sofa, in my most humble opinion, a person who is reaching many and then is unwilling to say anything but “I refused chemo and look at me,” is doing a disservice.  And, quite possibly is advancing some else's disease because there are people in the audience hanging on to their every word.
Her cancer may have been different.  Or maybe she was lucky.  If it was the latter, is that a chance you are willing to take?  I know it’s a chance I won’t take.   I’m sticking with the proven science that is medically accepted by the doctors and researchers around the world.  I like a holistic approach.  I embrace herbs and botanicals as long as I understand what they are doing to my body and how they may negate the benefits of medication that has been proven effective.
Your cancer is different.  Treatment should be custom tailored to your unique circumstances.  When a breakthrough that provides hope for millions of women is available, it won’t be advertised with headline teasers about a celebrity appearance on a popular TV show.  It will be a quiet scientist who publishes a research paper that will hit one of my medical feeds and go viral.

Thank you for the good folks at Is My Cancer Different for asking me to share my thoughts about the FACT that breast cancer is many diseases and one (treatment) size does not fit all.  It's an important message.


4 comments:

  1. Susanne Summers is to breast cancer what Jenny McCarthy is to vaccines.

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    1. A-MEN. That grassy knoll is getting very crowded with a cohort of morons with big audiences....... It's destructive and it pisses me off.

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  2. AnneMarie, this is so well written and thought out. I had watched Suzanne Summers while going through treatment and started reading into her hormone theory. Without knowing much about her breast cancer and missing hormones terribly. I wanted to believe the book she suggested called "WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT BREAST CANCER How Hormone Balance Can Help Save Your Life" By John R. Lee, M.D., David Zava Ph.D., and Virginia Hopkins. I look back at it now knowing that I was ER+ PR- (hoping I could have progesterone) and while reading your blog it occurs to me Suzanne Summers never talked about her specific case. For all we know she was DCIS, and/or node negative-hormone negative etc. Now I see through her special breast surgery which I am sure she got for free to elevate her Doctors status. We should not be fooled by her good looks since there are so many kinds of plastic surgery and fillers for lines at every plastic surgeons office. Thank you for writing this and opening my eyes to how vulnerable I was from my chemo brain and letting me use all of the science I have learned so much about from LEAD and SABCS, ASCO, social media, etc. Great post! Thank you!-Susan

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  3. There is plenty of information available on the Internet from survivors who want to share their stories, and from alternative health practitioners who have successfully treated cancer over and over again. Cancer survivors from alternative cancer treatment center did a lot of research and as well as sharing in the internet and thanks for posting by the way.

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