New and scared

Hi!  Sorry you are joining us out here.  Here is a risk calculator - not perfect, but it's all we have - go to the center of the page and select "Gail Model 1" -

My doctor said that if your rating is higher than 30% on this model, you are high risk.  I am going to guess that your Gail # is quite high based on family history and your own ADH, let alone other factors you may have that contribute to the risk. However, some high risk people never develop BC, some who are very low risk and have an outstanding health and fitness level, so who knows.

Now, over to your peace of mind.  This can all be a huge guillitine hanging over your head that keeps you from moving forward with your life. It can paralyze you with fear. In my mind, having the PBMX is not only a physically preemptive strike, but also taking control of your mental health and well being.

If your doc won't do it, and it is what you want, find another doc who will.  Don't feel wedded to one doc or afraid of severing that relationship, I've done it for my own peace of mind.  Think of it as a business relationship (they likely are more emotionally detached than you are). 

I think I've read about other PBMX cases out here where the family history was less significant than yours.  I hope others chime in because they are much more knowledgeable than me, this is all just my opinion and how I would personally approach the situation.

Sending you an understanding hug! 

Get a new doctor!  You are NOT jumping the gun!  I made the decision to have a prophylactic bilateral mastectomy with immediate reconstruction due to a strong family history and it is not nearly as strong as yours.  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.  Flash forward to now and I'm scheduled for a bi-lateral DIEP with Dr. D. in New Orleans on January 17th.  That's a week away! I am a little overwhelmed to be sure, but honestly, more excited to have this done and overwith. 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, and I'm headed down in a week and a half. 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.

PLEASE go see another doctor.  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.  Screw what your current doctor says.  It's YOUR life and your peace of mind.  And you are your children's only mother!  Even if you get it and can be successfully treated, you'll have to do that while trying to take care of them and then nothing is still guaranteed.  I'm not trying to scare you (and I'm sure you've already thought of all of this), I just want you to know you are not alone and what you are considering doing is NOT crazy or jumping the gun....especially after everything you're going through and has gone thru in your family.

Good luck to you and God bless you.  Put your faith in Him and be proactive for your health and the well-being of your family.  Just imagine the example you will be setting for your daughters!

Nancy

Jrachelle, I have been way more aggressive than you and I feel great about it.

My story-

In 2007, right before my husband and I conceived our third child, I found an odd lump on my right breast.  With both babies, I had mastitis in the same spot as this lump so I thought maybe it was scar tissue.  5 core biopsies and a lumpectomy it came back as Intraductal Papilloma and that was that.

In November, 2012 (my third child's 4th birthday) I started having chocolate syrupy discharge from the right breast. A google search said it might be normal, so I put it on my to do list to get in and get checked.  Before I could do that, I found a painful lump.  Now mind you, my right breast has scar tissue from the first lumpectomy, so it hasn't felt right since.  This lump hurt though, so I called that morning.

Within two hours I was having a mammo, a core biopsy, another mammo.  Results came back intraductal papilloma again, but this time as many as 5.

November 30th, I had a biospy.  This time is was about the size of a golf ball (I failed to mention I have dense, tiny little A cups and I'm 5'8", 140 lbs).  A golf ball is about 1/3 of my breast.

A week later, no cancer, but an infiltrated margin and an incidental finding of minute atypical lobular hyperplasia which increased my risk by 4-5x.

After a meeting with an oncologist, no history of breast cancer in my family at all, no recommendation for genetic testing, but suddenly at a 36% risk for invasive cancer, I had to think carefully.  I requested a consult with a Plastic Surgeon who made me feel MUCH better about my physical outcome should I "respond aggressively".

I was told I could take Tamoxifen (with all the side effects... not interested) or wait and see while having MRIs every 6-12 months.  I was told however, that MRIs would most likely lead to more biopsies in my future.  How many more biopsies can my bumps handle??  Geez!

I requested an MRI to ease my mind, results were clear.

My skin-sparing bilateral mastectomy was last Tuesday, January 15, 2013.  All doctors I met with were supportive.  Pathology came back and showed nothing but papillomas, on both sides.  My gut was right, how redeeming.

Drains came out two days ago, healing is going well.  

My follow up with the surgeon is Monday, will have my first pre-construction consult with plastics at the end of March and hopefully in April I will have the TEs placed with saline implants following.

In one day, I reduced my risk from 36% to less than 1% and will look forward to having the bumps I was meant to have.  DH can have his Barbie.  Kids are happy, the bumps fed them for a collective 6 years (wow!) and now they have been retired.  No regrets.  If you want to chat, I'm here.

Jen