Thursday, December 15, 2011

MEDICAL ADVICE FROM A CELEBRITY MAY BE BAD FOR YOUR HEALTH

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.




10 comments:

  1. I think the mainstream media and the "celebrity" cancer stories have a lot to answer for actually. I quite agree with you that we generally only get a snippet of the story if we're lucky and whatever we do get also lacks context. Very dangerous because it does perpetuate the myth that all breast cancers behave the same way, and that all treatments are the same. Great post!

    ReplyDelete
  2. Thanks, Rach...
    I think this is an important story to tell, especially with the recent headlines about the others whose diagnosis have been splashed across the headlines. Your comments mean so much to me. I have so much respect for your knowledge (just thought I'd share that in a most public way!!).... Thanks for the vote of support. It REALLY means a lot!!
    Sending love....
    AnneMarie

    ReplyDelete
  3. Excellent post. Thank you for a wonderful blog. "Chemo Brain," grabbed me right away. I'll have to bookmark you so I won't forget, lol!

    ReplyDelete
  4. Thank you Peggy Sue! Always appreciate to know people are reading. Bookmark---- ha! See the list with all the blogs.... I forget, duh!!!

    ReplyDelete
  5. I could not agree more. Positive thinking is one thing; realism, while searching for calm and inner peace, is another. My book, Fine Black Lines: Reflections on Facing Cancer, Fear, and Loneliness is more along those lines and has resonated with thousands of women and those who care for them.

    ReplyDelete
  6. http://www.facingbreastcancer.com/fine_black_lines.htm

    Thank you, Lois for taking the time to comment here. I know the comment links aren't clickable but I wanted to put the web address for anyone who is interested. Love this: Realism while searching for calm and inner peace!!!

    Best to you and thanks so much for sharing your thoughts.

    AnneMarie

    ReplyDelete
  7. Awesome Post dear!
    Your story is too good thanks for posting.
    Great job...

    ReplyDelete
  8. Thank you for such a kind compliment! It's very encouraging to see some of the things I believe to be very important being acknowledged by others. Again, thanks much for commenting!!

    AnneMarie

    ReplyDelete
  9. Well written AnneMarie. I hate celebrity snippets and soundbites being used to make what could be life and death decisions. One xize defintiely does not fit all

    ReplyDelete
  10. Crawford GlissadevilleFebruary 9, 2012 at 1:08 AM

    This blog post needs to be reprinted and published over and over. So sad to see eager short sighted fanboys, swallow a famous stranger's advice whole.

    ReplyDelete