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.

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 

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. 

karin-- with ADH /ALH, the risk is thought to be about 20 to 25%; but that also means there is a 75 to 80% that you won't ever develop invasive bc. They generally recomend close monitoring for ADH alone, some doctors recommend the addition of tamoxifen if there are other significant risk factors involved, such as family history of bc. I have LCIS which has a risk level of 40 to 50%, plus I have family history of ILC; so I do high risk monitoring with mammos alternating with MRIs every 6 months, breast exams on the opposite 6 months, took tamoxifen for 5 years and now take Evista for further preventative measures. It isn't for everyone, but it works for me.

Anne

Karin -

Have you seen a genetic counselor?  My BRCA test came back in 10 days when it was run in September so maybe you won't have to wait so long.  I have maternal and paternal aunts with both breast and ovarian cancer, other family members with different types of cancer and a younger sister who was dx with bc at 43. 

My BRCA 1 & 2 tests came back negative.  I believe my genetic counselor called it a "non informative negative".  I agreed with his conclusion, that it was very likely that some genetic mutation was happening in my family that has yet to be identified by a gene test.  I am proceeding as if it was positive and opted for a bilat and will have ovary removal after treatment.  My only regret is that I didn't have a preventative masectomy years ago as I am now Stage III after a clean mammo in Jan 09.

It's such an individual decision and it sounds like you are doing everything possible as far as careful monitoring.   I think your age may be an advantage as well, as it seems genetic based cancers tend to hit earlier.

Best wishes for making the decision that is right for you.

Hi Lorrie: I'm in this with you.. had it twice in the same boob.  During a routine screening, thankfully an MRI caught a 1.5 cm non invasive. 

went for a mtxmy (prev. rads, no other options) and chemo.  But I now have a DD and a small C.  Either I walk in circles the rest of my life and get a lift and reduce.  Now, why I'd go for that, when I can still get BC in it?  Dont' know.  So am pursuing this aggressively, even tho I had my onc (whom I love and is a darling usually) say to me "taking off the other breast won't keep the cancer from coming back."  Not helpful.  However, it will certainly lower the risk!

i am not BRAC+, I have the eggos and uterus out as I was heavily estrogen +++ and not in menopause yet at 53.  I've done what I can but as I see, why not finish the job already?  I can't keep on checking and worrying and living from mammo to MRI to mammo.................

enough already!!

Good luck to both of us

It's really interesting how time can put some things in perspective.  When I was first diagnosed, I had a surgical second opinion trying to decide between mx and lumpectomy.  The 2nd opinion surgeon was very distracted by the calcifications in lefty and my cancer was in righty.  I didn't get it.  I couldn't understand what the bother was with lefty.  I was worried about righty!  Well, fast forward through 2 MRIs, 2 Mammos and they are still focused on lefty.  My first mammo after treatment was traumatic.  I had to get two sets of films taken (read: stressed out waiting in the holding room watching everyone else leave), then they say I need an ultrasound.  But again, I have to wait for an hour for the tech to come back from lunch (it was either stay or come back another day--I didn't want to wait days to come back).  The tech does the ultrasound and says that the doctor just needs to look at it and we'll be back in about 15 minutes.  30 minutes later, the radiologist and the tech come back.  The radiologist is again fixated on lefty.  She says that she "thinks" she can see it on a previous mammogram.  She says she even ran it by the other radiologists to see if they see it too.  I ask her about the MRI I had a few months earlier which said the calcifications were likely due to changes in breast tissue due to the menstrual cycle.  The MRI findings were benign. What do they mean that they "think" they can see it.  I was told to go for a follow-up in 6 months with "probably benign" as the box checked off.  Oh, and that I might want to consider a biopsy.  I saw the surgeon about 2 weeks later and she was like "see you in 6 months."  I was totally freaked out and at my wit's end!

Fast forward 5 months, my chemo onc sends me for another MRI--came back fine.  I wanted to skip the 6 month mammo as it was 6 weeks after the MRI.  Oh no--had to go according to my onc.  He set me up to have the mammo read by the head of radiology who happens to be the same guy who reads the MRIs.  I only had one set of shots done (better) but, the result was that the calcifications are still there and then come back in 6 months, findings are "probably benign".  Yikes!  "Probably benign" are loaded words for someone who has just gone through the battle with the beast.

So over the last 6 months, I've given things a lot of thought.  I can't live with the possibility hanging so heavy in the air.  I know that the prophylactic mastectomy isn't a guarantee but I soooo can't deal with the worry and the what if.  Should I just hang out and wait for something to pop up?  We all know how quickly these things can grow.  So, that's why I'm going to have a talk with the surgeon when I see her in a couple of weeks.  Should I get the spots biopsied?  Should I just go for the bilateral?  Has the radiation side healed enough even to do this?  

Sorry, just ranting.  Clearly I have a problem with this!

Lorrie