Prophylactic BLM for ADH?

Hi CT,

OH here. I have ALH and LCIS and am in the process of deciding on whether to have a PBM. I also have chosen not to do tamoxifen at this time. There are some here who have had PBM and hopefully will be along too. I agree these forums are indeed a blessing.

Dear ladies, this is indeed a tough decision you are facing.

HellofromCT, you did not mention your age, which could indicate a need for further testing, but your family history might indicate the need. I strongly think the best thing for you would be to see a Certified Genetics Counselor before you make a decision. They are the experts in such matters-not even oncs. can keep up w/ this rapidly-changing field. If you need help finding one, you can PM me.

I did have a pbm in Feb. b/c I am brca2+. I found out in May 08, and could not live with any other option. It took quite a while to accept the decision, which I do not think you can rush. I am very pleased with my decision, though I was terrified about it before-hand. I woke up in recovery so relieved that it was not nearly as bad as I had imagined, and so glad not to have to think about it anymore!!

If you are in DC, there are great surgeons in Baltimore who do DIEP. I know many who have had this recon and are very pleased and had minimal pain.

I recommend that all of you who posted so far read The Breast Reconstruction Handbook by Kathy Steligo. Knowledge will help dispel fear. Also check your local library for a copy of Pretty Is What Changes by Jessica Queller.

Taraleec, I had the recon you are talking about-the latissimus dorsi flap. I am VERY happy with the results. If you do this, be sure that you investigate it thoroughly and that your surgeon does MANY of these on a regular basis. You should also consider genetic testing(or at least genetic counseling) b/c of your young age.

PBM is a big decision-consider a therapist who deals with medical decision-making. I am so glad I did this.

Also, you might want to check out www.facingourrisk.org , a site devoted to hereditary cancer.

Best of luck to you all.

I have ADH/LCIS (discovered on stereo biopsy) and am going in for excisional biopsy in a few weeks.  My understanding is that women with both ADH and LCIS are at very high risk for getting invasive BC.  I can understand your decision.  I will wait for my dx after excision, and then decide what to do..

 Good luck to you. 

HellofromCt, sorry I misread your moniker! There is a good DIEP surgeon in Ct. You are fortunate.

Regarding genetic counseling, it may still be good for you, even if you have decided. The main benefit would be to your children. My docs had assured me that I would probably not be positive either-but oncologists are not the specialists. I am 53 nad found out last year. My mom had BC when she was 57, died at 59. Doctors said probably not brca because she was post-menopausal. They were so wrong! (and shocked, I might add.

Insurance should cover a pbm for high-risk, even if not brca+. Good luck to you!!

I will get back to you tomorrow with the name-going to get it from a friend tonight. She loves the guy!

This is another reason for consult with a CGC. They can give you your risk and pass that on to insurance. Even w/o testing, they can give you a better idea than the onc. CT says that she has relatives on her dad's side who had BC-that may or may not indicate a higher risk-only the CGC could tell you that for sure. It is not necessary for it to be a primary relative, esp. if the side of the family with the history is predominately male. The CGC's assessment would be invaluable for insurance coverage.

CT- here are the surgeons my friend used in CT-she was VERY happy with them and the results.

Breast Surgeon-Laura Lazarus, in Greenwich

DIEP surgeon-David Greenspun also in Greenwich, assisted by Joshua Levine. She had the surgery at Greenwich Hospital.

I don't know how this is for distance from you, but keep in mind that there are not really very many DIEP surgeons in the country. So if this is what you want, you may have to go out of your way a little.

Re: insurance: my sugeon did not put that I was brca+. Just wrote "strong family history" and my ins. covered it. If you are denied, your onc. would be the best to go to bat for you. It is all in the codes they submit. But seriously, I find it hard to believe that they would not cover-I know MANY women who have had pbm. Good luck! Let us know!

Hi CT,

I had LCIS and and chose to have a PBM with direct implants. I knew I wouldn't do well with all the stress of testing every 6 months and tamox. It was a tough decision but, it was doable. It also wasn't half as painful as I thought it would be.

All I can tell you is that I don't have the worry of waiting to hear news if I would need a biopsy or if' it is finally cancer. I have peace of mind and no regrets. I made the right decision for me. But, it's not for everyone. If your the type of person who worries all the time taking tamox. and the testing might not be for you. If you deal well with stress you might be ok with taking tamox.  Feel free to send me a PM if you need to talk.

Take care,

Ann

FYI: Levine & Greenspun are fabulous! They are considered tops in the field of micro-vascular tissue flaps or DIEP. Both trained under Bob Allen, DIEP pioneer, who has done more DIEP's than any other surgeon. Allen and Levine also work in NYC together at NY Eye & Ear. Greenspun is only at Greenwich.  Allen also works at NYU with top breast surgical oncologists, Shapiro & Guth. ALL are super physicians!!

After much research, thinking and emotional processing I have decided to have a PBM. It is such a relief to have made the decision. Now comes the task of convincing my insurance company. I think that will be the most difficult thing to do. I have plenty of time to get prepared. Won't be doing it til November or December.

Hi HelloFromCT,

I wish I had read your posts earlier.  I was in almost the exact same situation as you, having had 2 lumpectomies, both ADH, with just a small amount of family history.  Also, my breast tissue is so dense (fibrocystic) that it made identifying tumors extremely difficult.  My lifetime risk was over 50%.

 I made the decision to have PBM.  I had to fight the insurance company - first, b/c they said they would only cover a mastectomy if I had cancer.  Once I fought that and proved the medical necessity (your docs who support your decision will write letters of support for you - they know the drill), then I had to fight to have a doctor out of my network do the surgery, b/c the GAP flap was the best solution for me, and no one in my network does this.  

 The good news is that the battle was won.  It took about 2 weeks of incredibly persistent follow up, but they finally gave in.  I had the surgery 5 weeks ago and am doing really well.  

Let me know if I can help you in any way! 

Hi HellofromCT,

Another from Ohio.  i don't get on the forum often (i think i'm having too much fun on facebook, LOL).  Three ADH lesions plus an are of ALH bilateral involvement with "lots of calcifications".  I had the biopsies last summer ('08), and had BPM with immed reconstruction (TE's, no flaps) in December and exchange 2 months ago.  My BS considered me very high risk; area of 50% lifetime risk.  The surgery was the right decision for me. I can't quite do what i used to...my PS has restricted me "for life" with the implants in...no moving furniture, heavy lifting, body building (yah right, LOL), so i've become a lightweight there...i do aerobics and core ball minus any workout using my pecs.  I do wake up at night with turning when i lay on my side, but tons better than with the TE's in. I am a little larger than i was pre-BPM, it doesn't bounce and no-one has a clue that I'm cold! Hehehe... I digress, but I'm glad i did what i did.  My insurance paid... my surgeons were in network, so after i met my deductible (met that with my ACL rupture and reconstruction there last fall), i had no out of pocket expense.  Of  course this year i am paying my deductible for the exchange.

Tweeterbeeker,

My first post, was wondering if you'd share the name(s) of the Baltimore area docs you'd mentioned who do reconstruction?  The ones who do DIEP.  Thanks!

Thanks tweeterbeeker, your recommendations are much appreciated.  I'd ordered Kathy Steligo's  book, and it should be in Friday.  Just learned that my BRCA came back negative, which was excellent news (strong family history of breast/ovarian).  Biopsy last month showed ADH in right, about 7mm area on MRI; i have no idea if this is considered big? small?  Have always had calcifications, and have very dense breasts, no children, age 54.  Now that BRCA is negative, i'm back to thinking that the lumpectomy scheduled for Aug 4 is the way to go, rather than bilateral prophy mastectomy.  I greatly appreciate everyone's help here!  We lost my 52 year-old sister last Sept to  bc, which was diagnosed as Stage 3 -- she lived only about 4 years after diagnosis.  So, I'm scared and confused still about what to do. 

HI

   I was in a similar postion.  I've worried and prayed and finally decided to have the PBM with immediate reconstruction.  I am divorced with thre young daughters.  My mother passed from BC at 47 and her sister developed it in her 50's.  I've had no breast issues so far but....    I don't think I can wait to see.  The gentic testing for me wasn't an option since my mother had passed 17 years ago.  I'm 42 now and have surgery scheduled for tomorrow at 9am.   It's not an easy choice and I still have fears, not making the wrong choice, but of the pain and recovery.  I've schedule this around my daughters schedules (something I couldn't do if this were a dx) so I'm hopefully going to breeze through this.  It's not a choice for everyone but I'm glad it's an option.  btw my insurance approved it.