A Funny Thing Happened On The Way To Survival

I guess I am a born philosopher; I came out of the womb asking, “Why?”   You can imagine that when I got breast cancer twice I had lots of whys.   I never asked, “Why me?” but I DID ask, “Why at all?  Why should anyone have to suffer like this?”  Refusing to let my suffering go to waste I determined to give it meaning by helping others who were facing the same ordeal.  I wrote my story on websites and message boards, lending support, answering questions and warning people about pitfalls to avoid.  I hopefully probably offended more than a few members of the medical establishment.  I really didn’t care!

At the time I had my mastectomies DIEP flap reconstruction was just gaining popularity. Since I was overjoyed with my results I eagerly shared my success with anyone who was interested. In fact, I loved my breasts so much that on more than one occasion I flashed them faster than folks could say, “No thank you!”  To me they were medical marvels!  It became a joke among my friends to say, “Is there anyone in the country who hasn’t seen your breasts?”

That was 2006—fast forward to June 2011 and the FORCE conference in Orlando.  FORCE stands for Facing Our Risk of Cancer Empowered and is dedicated to fighting hereditary breast and ovarian cancer. Since I tested negative for the genes I never thought I belonged in the organization, but I wanted to visit friends in Florida and the conference gave me a neat business write-off.  (Not very noble of me, I confess.)

Truthfully, I dreaded going because I didn’t know a soul, and for the first day I felt so out of it that all I could think about was leaving early.  Why in the world did I come here? I didn’t belong.  Alas, changing the flight would cost a fortune, so I quit feeling sorry for myself and jumped into the program wholeheartedly.  

The day ended with a gathering called “Show and Tell” where attendees could speak directly with surgeons about treatment procedures they might be considering.  To my surprise I walked into cocktail party with no signs of surgeons or presentations. I asked one of the FORCE volunteers why, and learned that the “Show and Tell” took place in the next room, where women at various stages of reconstruction would show themselves to women facing mastectomy.  Next thing I knew I was standing, bare-breasted, in a circle of grateful women asking me life-changing questions about my surgeries.   

Now I knew the reason why I had come—to help people, in the flesh, who were worried and frightened by this awful disease.

Oh, and also because there were some people in the country who had not seen my breasts.

Great Resource on Breast Reconstruction

 I am delighted to announce that the American Society of Plastic Surgeons has produced a beautiful brochure that enables women facing mastectomy to begin the decision process well informed.  It shows before and after photos of every surgical option available, including the pros and cons of each procedure.

And I am proud to have been featured as one of  four women who have had reconstruction and are now active in breast cancer awareness.  

Grow Breasts from Fat: the Future of Breast Reconstruction

A new form of breast reconstruction that allows women to re-grow breasts from their own fat stem cells after a mastectomy could be offered to British and Australian breast cancer patients for the first time in 2010.

A human trial of the new technique is being planned by plastic surgeons at a London hospital. The trial will study whether fat cells can be induced to multiply and fill a breast-shaped mold implanted under the chest skin to recreate a breast after mastectomy. Australian scientists also recently announced that they would start similar treatments on women within six months, following animal studies involving mice and pigs that successfully re-grew breasts from fat.
To read the full story visit the blog of Dr. Minas Chrysopoulo, Board Certified Plastic Surgeon, and Twitter friend @mchrysopoulo.

Why some mastectomy patients are denied the best treatment available. HINT: Follow the money.

Research shows that only 25% of patients facing mastectomy are informed about the option of breast reconstruction. In my work in the breast cancer community I have met women whose own reconstructive surgeons did not tell them about these state-of-the-art procedures, even though they lived metropolitan areas where several surgeons did perform them. Since the DIEP procedure has been done in the US for over 15 years and is well known among reconstructive surgeons, what conclusion can we draw except that these doctors choose to keep their patients in the dark in order to keep them in their practices.

The problem doesn't end with physican turf wars: the following article from CancerCompass reveals that "...some insurance companies will discourage a patient from pursuing such advanced options because cheaper alternatives only may be provided by their 'in-network' providers."
Hand me my smelling salts!

The complete original cited in CancerCompass has been deactivated: DIEP And SIEA Microsurgery Flaps -- The Gold Standards In Breast Reconstruction: And Why Insurance Must Cover Them