The Clock Stops Here...

Friday, October 3, 2008

In the Pink

Well, it's October already and Breast Cancer Awareness month is in full swing.
On Tuesday, members of my Force group (Facing Our Risk Against Cancer Empowered), were invited to be members of the Good Morning America audience, have a studio tour and face time with Diane and Robin.

Under normal circumstances, the only thing that could get be out of bed in still darkness, is a town car headed for the airport. But, it sounded like fun and a great opportunity to see some of my Force pals and meet new ones. I would rally...Big disappointment.

First of all, where was my seat??? If I knew I was expected to stand and watch, it would have been an automatic deal breaker. Second, why were we asked to be here? The content of the show had nothing to do with breast cancer. Third, do I look like I am from Peoria??? Do I care about what goes on in the control room and green room??? I think not. Fourth, where was our face time with our hosts? Smile, nod and a quick, perfunctory group shot and in a nano, we were kicked to the curb. Wha happin??? We were duped.

At 4:00, Christina Applegate was appearing on Oprah to discuss her decision to have a bilateral prophylactic mastectomy, after receiving a breast cancer diagnosis and testing positively, for a Braca 1, mutation.

My Force pals, have dreamed of our Oprah moment for years...Bravely, a very public figure, was putting a face (or bust) on the challenges of being at familial high risk for breast and ovarian cancer. Oprah would lay bare, all the misconceptions what the media loves to call a, "radical approach" that has women, "mutilating themselves" and "chopping off their breasts".

It was not to be...Oprah was in a fog, not prepared and definitely, not, someone who has experienced any of this, in any first hand way. Christina, struck me like a deer in the headlights, shell shocked and not truly informed. Her oncologist left out many important points and gave, incorrect, numbers, instead of risk ranges for those with BRCA 1 & 2 mutations. No plastic surgeons were featured, to explain the fantastic improvements and beautiful reconstruction results, that are now possible. Insensitively, they had a former guest who was losing her battle with breast cancer, in deep recurrence with brain, liver and lung metastasis, SKYPED in from her living room, to discuss how little progress has been made. I am sure Christina was shaken to her core. Duped again...

Fortunately, my week brightened considerably! Wednesday, Joanna Rudnick's film, "In the Family", (which I saw at a Force Conference in May), was being aired nationally, on PBS. This is Joanna's deeply moving, personal journey, about finding out about her Braca 1 mutation, and the stresses and challenges she faces while undergoing surveillance and contemplating prophylactic surgeries. It is available for viewing all month on Her brave, funny, sad, informative film is a must see for any woman at high risk. Don't miss it, either way. This is the real deal.

On Thursday, a lovely thank you lunch, for Breast Cancer Alliance committee members, was held at the Belle Haven Club, where Ellen Matloff, M.S. was the speaker. Ellen Matloff is the Director of Cancer Genetics at Yale. She is preeminent in her field. How I wished, she was on Oprah, clearly and specifically explaining who was at high risk and would benefit from Genetics Counseling. In a nutshell:

*Anyone diagnosed with breast cancer under the age of 45
*Any diagnosed with ovarian cancer, at any age
*Multiple cases of breast or ovarian cancer on either the maternal
or paternal side
*Male breast cancer
*Multiple breast, ovarian or pancreatic cancers in a family or individual
*Jewish ancestry, with even one case of breast or ovarian cancer
*Tumor pathology that indicates medullary or "triple negative" breast cancer.

Individuals with Braca mutations have a 55-87% breast cancer risk, before the age of 70, and a 15-60% chance of developing ovarian cancer.

Conversely, the general population has a 12-13% chance of developing bc by age 70 and a 1-2% chance of developing ovarian cancer.

, is the information that needs an "Oprah" forum. This is the real deal.

Thursday evening, was a joy. My original Breast Oncologist, world re known breast surgeon, Dr. Roy Ashikari, was honored at a fundraiser for the Ashikari Breast Center, at the Ritz Carlton in White Plains. His partners, colleagues and patients came out to pay their respects and kick off a fundraising effort to continue to make the Ashikari Breast Center a top U.S. destination, for first class, caring, breast health and cutting edge reconstruction. I was extremely proud to be featured in the patient testimonial video. As well, to be acknowledged by Dr. Ashikari, as the person who started the brigade, (of high risk patients from all over the country), to choose their brilliant, nipple sparing, "one step" prophylactic mastectomy, with Dr. Andrew Ashikari and Dr. Andrew Salzberg. I am so pleased to call many of these women my dear friends, and to have been a small part in helping them reduce their breast cancer risk to less then the general population (about 2%) and have gorgeous, natural looking reconstruction, that leaves them feeling whole, and safe.
This is the real deal.

Lastly, Totalbeauty Bloggers are joining forces this month, to raise money toward a breast cancer cure. I hope this weekend, to figure out how to post this information and put up the features for sponsor giveaways and donation opportunities. This too, is the real deal...

And we have a whole month to go...




  1. .you go girl! glad you just tell it like it is...that's why we all luv ya! happy to hear the great docs were honored...truly deserving!
    again...would never have found out about this revolutionary procedure and have had the successful outcome without you as the gorgeous captain of my cheerleading squad! YOu deserve the honors too!
    shameshame on OPRAH...she could have reached so many more women!MAL

  2. Thank you for this post and your awareness-raising. It has been a pretty amazing week, with Christina on Tuesday and then POV as well. I taped the documentary and just finished watching it, tissues in hand. Two weeks out from my own surgery, I feel an enormous weight lifted and am inspired by the work you're doing to educate others. Thanks.

    p.s. Oprah really looked totally spaced out.

  3. Thank you Ladies for your kind words.

    It has taken me a long time to put myself out there, exposing such personal information, but responses like yours, make it all seem worthwhile.

    Huge congrats!!! Be proud of this gift to yourself and your family.

    All the best,

  4. Debbi,
    Beautiful post. I was with you for 2 of your events and I also felt incredibly let down by Good Morning America. They wasted the program on silly "spots" when they could have used the time to educate America about breast cancer.
    The Ashikari benefit was beautiful and you and many survivors shared your personal stories and gave courage to so many women. Bravo!
    Take care and know that you have made a big impression on so many women.

  5. Debbi,
    Great post. Did you know there is a genetics practice in Greenwich that cares for BRCA patients?


  6. Thank you E.! Your friendship and support is a treasure!

    Dr. Steve,
    Please tell us more! The only specific program I am aware of, his the Genetic Counseling services offered at Greenwich Hospital in conjunction with Yale (and Dr. Ellen Matloff).




Related Posts Plugin for WordPress, Blogger...