Topic: do i do a preventative mastectomy

I wanted to jump in too.  I am a little over a year out from treatment which was lumpectomy, chemo and radiation.  Over the course of time, my "good" breast has calcifications in it (probably benign).  I wish I knew then what I know now.  I would have had both removed and eliminated the worry.  I am terrified of having bc again.  I plan to visit my surgeon to discuss the option of double prophylactic mastectomy.  The constant worry is enough for me.  

Lorrie 

If I could have seen into the future I would have done it. My mother, grandmother and first cousin have all had BC. I am BRCA negative although my first cousin is positive. All the doctors say they believe it is a mutation that is not yet identifiable. It is a tough choice, but if you do a preventative you have time on your side. You can interview doctors and decide about reconstruction without the degree of fear you have when there is cancer. It is a tough choice, good luck.

Lorrie - I totally can understand your frustration. Honestly, it is just that kind of thing that lead me to make the decision that I did. Life is too short for all that kind of worrying. And, for me, when it really came down to it, they were "only breasts." I wish you peace with your decision! - Jean

Hey everyone....well I should have known better than to listen to a nurse!  She gave me the wrong diagnosis!!  I do not have DCIS, it's lobular hyperplasia.  I'm resting a bit easier but will see my surgeon & a breast specialist tomorrow.  I'm leaning towards removing the suspicious tissue, seeing what the pathology shows & what by BRCA is when it comes back.  I'll then make a decision regarding mastectomy.  Has anyone else been down this same path?  Thank you...Karin

karin-----was the lobular hyperplasia regular or atypical? (ALH)  The atypia is the worrisome part---if it is ALH, then usually an excision is recommended to make sure nothing more serious is in there along with it; if it is just regular hyperplasia, it is not an issue. I was diagnosed with LCIS 6 years ago (a step further along the bc spectrum from ALH with double the  risk) and also have family history of ILC (mom)--I took tamoxifen for 5 years, now take Evista for further preventative measures and continue with high risk surveillance of alternating mammos and MRIs. So there are many options. Whatever you choose will be the right choice for you.

Anne

Anne, I'm new at this...what is BSGI?   Karin

karin---sometimes they recommend an excisional  biopsy for ADH (or ALH) just to make sure nothing more serious is in there along with it (DCIS /LCIS/ or invasive bc). They often recommend just close monitoring for ADH/ALH, unless there are other  significant risk factors , such as close family history of bc in a primary relative, then tamoxifen is often added to the recommendation. The news you got from your doctors sounds good; sounds like the calcifications are stable and not clustered. (clustered is more worrisome than scattered); sounds like they don't feel an excisional is needed at this time. A BSGI is a breast specific gamma imaging--I haven't had this don, but I'm interested in it as well. I have alternating mammos with MRIs every 6 months, breast exams on the opposite 6 months, took tamox and now take Evista. Feel free to PM me if you want to talk, I've been dealing with this high risk for a long time now.

Anne

Wow!!  Amazing news....my Dr's. office just called....the gene test is back after only a week & it's negative!  Thank God!  I'll keep on with the 6 mo. mammos & go from there.

Karin

My father died 20 years ago from breast cancer, so I had the BRCA test done this year and I am BRCA1 positive with a new, unknown variant.  That being said, I have decided my risk is too high so I am having a PBM and DIEP reconstruction in December and an oopherectomy next year.  It can take 5 years or longer to find out if the variant is dangerous or not, but if it is, I am not only a higher risk of breast cancer, but of ovarian cancer as well, so I'm taking care if now before it takes care of me.

Slm ~ You'll be in my prayers.  I would do the same thing!  Take care of yourself.

Karin

Thanks everyone for the prayers and support.  I think I will need it as I was so hurt when a neighbor told me I was crazy for doing this.  I told her it's hard for some to understand and that it was my personal choice.

My history is DCIS 17 years agoin left breast and this year LCIS in the other breast.  BS said she would do PBMX if I wanted.  BRAC came back negative and BS was suprised as I was young (37 for the DCIS) and now LCIS.  After much researching  I decided to do PBMX.  My dtr helped convince me she said "Mom why do you want to go thru the tests every 6 months and wait to see if it becomes imvasive".  So had BMX on 9/22/09 which showed atypical hyperplasia now in the old DCIS breast.  BS said I was a ticking time bomb and I made the right decision for the BMX.  You have to do what you feel is right. 

Hi everyone,

I would like to run this past all of you.  In September '09 I had an excisional biopsy of my LB because of a nipple that turned in suddenly. The mammo and ultrasound found a mass behind my nipple. The punch biopsy came back inconclusive, possible DCIS. My excisional biopsy turned into a partial MX.  It came back neg. but  with lots of microcalcifications and a lot of other things that sounded like they were describing a menstruating younger woman.  I am 55 and haven't had a period since i was 46.

I have a grandmother and an aunt who died of BC, the aunt before she was 50. I also have two sisters with LCIS.  One has had 4 biopsies and the other 5. They are older than me.

My BS does consider me at risk because of family hx.  I can't afford the BRAC testing as my insurance doesn't cover it. 

I have never worried about BC until about two years ago.  I started feeling calcifications all around my RT nipple and behind it, deeper and farther back.  My dr. and BS did explain that these do occur because of age and mammo has never come back  suspicious on that side. But my gut has been screaming at me for these past two years that something is wrong there. (i did have to have an ultrasound once on my RB because of microcalcifications, but it was decided no need to biopsy).

My BS has no problem doing a MX on my LB because of the partial MX there already.

I explained to him i have been worrying about the other breast, which didn't sway him much, but then i also stressed that because of being divorced, on limited income because of MS, so on SSDI and working part-time w/o benefits, I couldn't afford to get BC because i can't afford to take off work for lots of tx's because if i don't work, i don't get paid.  I also explained that I want to match, and I don't mind matching flat.  I'm really not interested in reconstruction.

He totally understood those issues and also he knows i won't get anymore biopsies done. I won't go through what my sisters have gone through, he understands and agrees with that also.

But to tell you the truth, the biggest reason i want the BMX is because of my gut saying get rid of that RB, which hasn't had a problem.  Also, the left one really is awfully deformed and i do want to match.

Does anyone understand my reasoning for wanting this done and does it make sense to you.  It totally makes sense to me, but thought i'd run it by objective people.

Don't get the idea the BS is fighting me on this, he isn't, he just wants me to be sure since i have not been diagnosed as yet. (I'll bet money the RB comes back with something though). He's having me come back in three months and if i still feel the same way, he will do it, no problem. He wants me to wait the three months to give me extra time to gain strength back, because MS causes you to take just a little bit longer to bounce back, not much. He insists that what i had was major surgery, since he checked my SLN as well.  I also think he wants me to have time to think, which i don't see anything wrong with either.

I realize we all make our own decisions.  I just think mine is logical, even if i didn't have such a strong gut feeling, i sure don't like how i look now.  But i also think i should listen to what my body is telling me.   But I am more than willing to listen to what others think of my thinking processes here.  I really want your feedback, so if you don't mind taking the time, please help.

Thanks so much,

Marian

My kids mom-

Thank you so much, mykidsmom.  i guess what's different is that my left was an "accidental" prophylactic, but that was due to circumstances beyong my control  Besides, last nite i looked up everything on path report.  Besides describing the breasts of a menstruating woman, which i'm not, most of the things on it, were described as "hard to tell from DCIS", which from the first biopsy was the problem, they couldn't decide if it was DCIS or not.  On the last path they decided it wasn't.  I've heard a lot of horror stories, where in that tight of a case, they just didn't get it "right".   But since they did the partial MX and took nipple and aerola and another 6 cm all around it, i don't even need another opinion.  It's ugly! YUK!  I'd much rather have a flat MX than a half MX. Thank you again, because i sure feel like the other one is the one with a problem whether it shows up on mammo or not. 

I tend not to go to the dr. because of fear of making an ass out of myself.  Since they've said RT is ok, i won't argue w them, or push for more tests, so better to take the chance while i have it and get it rmoved.

And yes, I definitely want to match.  Did you have any "feelings" one way or another about the so called "good one"?  Were you surprised there were develing problems in it before you had it removed?

Thanks,

Marian