Topic: do i do a preventative mastectomy

Have you had genetic testing? It makes a big difference to know whether or not you are BRCA+  You may want to consult with a few doctors before you make a decision, especially find a dr who is "savvy" about hereditary bc

I don't think a masectomy is 100%, while it certainly may lower your odds considerably.  From what I understand. It is nearly impossible for a surgeon to remove all the breast tissue.

That being said. I do wish I had been taken advantage of that option earlier in my life.

BRCA test and Vitamin D test could help determine where your risk is coming from and what you can do.

Thank you!  I'm getting a second opinion in a week.  I totally trust both Dr's.  They are the best in their field where I live.   My med. oncologist was one of the top Dr.'s involved in the study for Tamoxifen.  I had been on evista but he felt strongly about doing the tamox. rather than evista.

I have a lot to think about & sooooo appreciate all the comments & suggestions.  I'll let you know what decision I make.

 Thank you all so much!

Karin - As you have seen, we all have personal reasons for the choices we make. You have options. Only you can decide what is right for you. It does get easier after you make your decision. Hugs. - Jean

Jean, My friend also said that about it being easier once the decision is made.  Right now without all the answers & opinions from my Dr.'s it is scary.  Luckily my husband is right by my side.  Other than that I don't have any other family to fall back on.  I'm also not telling my daughter until the decision is made.  Thank you so much for your support.  Nice to see you're a hugger too...hugs back my friend!  Karin

My medical oncologist stated that by having a mastectomy we could be 100% sure that this would take care of the problem.  So now I'm confused...I was not aware that they couldn't get all the tissue by doing this. 

I would definitely have a double mastectomy!  Take it from me.  I was diagnosed almost ten years ago and would have loved to have the option that you have.  Even though nothing is 100% going to prevent it, it will certainly cut your risks.  The mammogram did not pick up my malignancy, therefore, I had a 1.4 cm tumor that had been there for years resulting in surgery, chemo, tamoxifen and femara.  I have implants now and am very happy with the outcome.  Since I was small before, I went to a bigger size.  Do what you can now to help prevent a future problem in which you will have fewer choices!  Good luck  with your choice.

Hi there - Just my two cents. While it is true that a PBM does not remove all risk of future bc, my risk for invasive bc dropped from somewhere between 30 and 80% to somewhere between 1 and 5% after my mastectomy. That was enough for me. My risk now is much less than the average woman. As for reconstruction, my oncologist strongly recommended it for me and I am so glad that he did. I chose implants because they don't require surgery on another part of my body, but there are a lot of options. Since you don't have to hurry w/ your decision, I would strongly suggest that you carefully research all the reconstruction options. Don't rush your decision, you have time to think it through.

As for ultimate size. I started out this process as an A/B size and now I am a B/C size. I kind of enjoy being a little bit bigger. That part has added a little fun to this whole process.

Hugs - Jean 

Hi Mykidsmom....Luckily I have the BEST surgeon to do reconstruction should I go that route.  I worked with him yrs. ago at a local hospital.  I'm an Occupational Therapist.  He has a foundation here in St. Louis & does reconstruction for those pts. that would not otherwise be able to afford it.  He's done other surgery on me & I would not trust anyone other than him.  Thank goodness I know his work & his reputation!  Karin

I too am most likely going to have a mastectomy on my "healthy??" breast. My gut tells me its the right decision.  If losing a breast can give me a better chance of never having to go through this again, then off with the breast!  And if it means my family never has to go through this again, then that's even more incentive to me.

My mother and BOTH grandmothers all had bc.  So I have it on both sides of the family.  When I was diagnosed with atypical ductal hyperplasia, my breast surgeon said my risk for breast cancer was 60-70%.  I did have genetic testing and I am BRCA negative.  Even being BRCA negative, with ADH and a family history I had about 70% chance of bc in my lifetime (BRCA positive is about 87%).  When I went back for my check up this year,  my breast surgeon said that having ADH without a family history increases your bc risk 4-5 times and WITH a family history it raises you risk 8-9 times.  So I probably had about a 80% chance of bc.

I chose the preventive mastectomy with skin and nipple sparing.  I have silicone implants and look great.  I had this done 18 months ago and I don't even worry about getting breast cancer anymore. It is wonderful to still have my nipples and I feel like I just changed the "insides" of my breasts.

It is true that cannot get every single breast cell so you risk will never be 0%.  However, even with nipple sparing my risk is probably around 3-4%.  The average women has an 11% risk so it is much less than that.

It's a very personal decision that each woman has to make for herself.  You don't have to rush into anything either.  I am VERY happy with my decision and it gives me peace of mind. 

MY wife recently had MRI and biopsy and had ADH - but everything "found" benign   She has family history - mother and sister died of BC  Doctor standard of care is for lumpectomy (ping pong ball size) scheduled in 3 weeks.  I was shocked at first at the lumpectomy approach when all was benign - as was she ....   Does this sound like a reasonable approach?  Doctor said the risk of finding something was 5%

LBBoston:  yes, a lumpectomy is the standard treatment for ADH.  It is considered "precancer".  With her family history, did they recommend genetic testing?  Did they recommend Tamoxifen also?  These things are pretty standard for ADH.  With her family history AND the ADH she is at pretty high risk and should investigate further surveillance/treatment.  I chose a preventive mastectomy when I was in this situation, but some chose surveillance and tamoxifen.

KarinK:  atypical cells are not the same as calcifications.  Calcifications themselves are not harmful, but they show up around atypical and cancerous cells.  I don't think anyone knows for certain if and when atypical cells will turn to cancer.  My breast surgeon's opinion is "they almost always do (if not removed)" so they usually make sure they are removed.  Even after removing atypical/pre-cancerous cells, they are a marker that you are at an increased risk for breast cancer - especially in the next 10 year.

 Anne1962:  I'd be happy to share my experience in detail with you.  You can email me at 1ocforce.kris@sbcglobal.net

I actually went a little smaller with my reconstruction.  The other ladies in my support group all went larger.  We all had nipple sparing and the incisions are in the crease under the breast.  My implants were placed during the first surgery since I had plenty of skin and wanted to go smaller.  They all had expanders placed and went for fills.  They then had an exchange surgery where the expanders were swapped with silicone implants.  The good thing is we all got "something good" out of this - they got to be a little bigger and I got the breast reduction I wanted! 

Anne ~ Thank you.  I am closely monitored, have mammos every 6 mos. & am on Tamoxifen.  How well that is being absorbed & working is questionable.  The atypical cells or calcification are back having been removed last summer, '08.  My dilema is do I have them removed again & keep watching or do the mast. & be done with it?  I just had the BRCA test but have to wait about 4-6 weeks for results.  I'm at high risk since it runs in my family.

Karin