Preventative Double Mastectomy w/ DIEP Flap reconstruction

LEP and Jeanmae - I am having the same...only in Nola with Dr. DellaCroix.  Stage I surgery is next Thursday the 17th!!  A little scary and overwhelming to be sure, but not nearly so scary and overwhelming as having breast cancer....or worrying about getting breast cancer!

I made the decision to have a prophylactic bilateral mastectomy with immediate reconstruction due to a strong family history.  I am not BRAC positive.  I just do not want breast cancer!  My younger sister lost a 5 year battle with breast cancer in 2008 at the age of 43.  I'm now 51 with 4 small children (two 10 year olds and two 7 year olds).  To my husband and me, this was a no brainer decision.  My intentions were to do it early 2012 but life got in the way and, as I'm sure you can imagine, it is an easy thing to put off.  Then another mammogram (negative thank God) rolled around and it finally kicked started me again.  I couldn't keep putting it off or I would have no one to blame but myself if I ended up with breast cancer. And after everything my sister went through, and everything most of you have been through, that just wasn't a gamble I was willing to take.

Then the most amazing thing happened, after going down for a consult in October, and having everything sent in to BCBS for out-of-network approval, I was granted full pre-certification 29 days later!  No appeals...a slam dunk.  And I was totally ready to put up a fight.  We had loaded up my pre-cert request with everything I could think of: letter from my GYN stating why he was behind be doing this, a copy of my sister's death certificate stating she had died from metastic breast cancer, a copy of my birth certificate showing I was her biological sister and therefore high risk, and a two page letter from me that explained why I had made the decision I had made, why I didn't want a lat or TRAM, and why I wanted a DIEP in New Orleans.  Lo and behold, they approved me.  I think was still in the floor from the shock when she called to tell me it went thru on the first pass.

So, flash foward to now. I know it's a big decision, and not everyone agrees with, but I suspect each of you understand why I made it.  Not only do I have four small children, but I am relatively young (or at least I feel that I should be!), and I can.  Like I said earlier, it's a no-brainer in my mind and in my heart.  I've made no secret about what I'm doing (and why) and I have had great support from friends and most of my family.  Ironically, my brother, who is an OB/Gyn, is the only one of my family who is not fully supportive.  Or at least not happy about it because he thinks I'm jumping the gun.  I say, yes, that's exactly what I'm doing.  I honestly think what bugs him the most is that I didn't consult with him before or during the decision making process.  But I had my reasons for that.  He's like so many other physicians across the country who are not familiar with the DIEP.  It amazes me really.  I would put my gynecological life in his hands (and that of my personal Gyn), but what each of them knew about the DIEP would fit in a thimble. Doctors, as a whole, seem to "know what they know" and practice what they know, but they truly do have blinders on when it comes to things outside of that until they come face to face with it.  I have no doubt that, once I am through with all of this, both my local Gyn and my brother will be recommending their patients check out what NOLA has to offer instead of the "standard" lat and TRAM.

If you haven't already been there, go to www.breastcenter.com and read about the DIEP method of mastectomy and reconstruction.  What they do there is amazing and people come from all over the place to have them do their reconstructions and mastectomies.  Yes, most have or had cancer, but many (like you and me), don't.  The DIEP method is done other places but not all are experienced as they ought to be.  Hopefully you are close to some place that is or could travel to Nola.  You don't even have to go there for a pre-op. They can assess you as a candidate from pictures..

There is a wealth of information on this site....and SO many people who will help you. 

Good luck Cher214 and God bless you all! 

Nancy

I'm about to have the Preventative Double Mastectomy w/ DIEP Flap reconstruction. We have an extensive family history my middle daughter had the Preventative Double Mastectomy with implants in April. She recommended finding a pen pal of sorts who was going through the same thing she had one and swears it made it easier on her.

I recently had a double mastectomy with DIEP reconstruction. In my case I had DCIS in one breast but the area was too large for a lumpectomy. Once I knew that a lumpectomy was not an option, the decision for my surgery was easy to make.

My reason for this post is to say that as a New Orleans native; I know that the St Charles Ave breast center has a wonderful reputation and I'm not trying to take anything away from them. I even met with one of their surgeons for a second opinion. But since they were out of network for me I choose my surgeon from the Ochsner system and the Tansey Breast center at Ochsner. I had a team of surgeons for my surgery. Dr Ralph Corsetti performed my masectomies (head of the Tansey center). and he collaborated with Dr Hugo St Hilaire for reconstruction at the same time (he is the head of the LSU plastic surgery Dept) but has privledges at Ochsner. )As an aside the DIEP flap Procedure was developed at LSU.

I am 3 weeks post surgery and I am very pleased with my results. If anyone feels that the Breast center is not an option for financial reasons and is either in the New Orleans area or wants to travel here for surgery; Iwould highly recommend my team of doctors.

Amen! Me too! Even without BRCA testing once my mother was diagnosed (besides her sister 10 years ago) I went to see a reputable breast oncologist and he did a risk assessment, said my 5 year risk was 4.5%, and lifetime risk was 42%. I had been saving up my HSA dollars for a breast reduction anyway, so since we were already going to be operating on them, and I am single and have to hold down a job and also be Grandma, I opted for the bilateral mastectomy and DIEP flap reconstruction. He ordered an MRI to be sure there weren't any surprises, since it would make the difference between a sentinel node biopsy during the mastectomy vs a full dissection afterward. Lo and behold, the MRI (and subsequent biopsy) showed up a small, early cancer already there. Really dodged a bullet there. Waiting on the oncotype results, but both my mom and I are now officially cancer-free where the outcome for both of us would have been much more dire in a couple of years.