Preventive Mastectomy

This proceedure was suggested to me last September after my 2nd diagnosis of Atypical Ductal Hyperplaysia (ADH) because of a strong family history. I discussed it with my husband and we decided that if I had another abnormal mammogram, I would go ahead with the surgery no matter what the biopsy said. On my 6 month mammogram this April, there was another area of suspicion. I went to the oncology surgeon and said I want them off. My biopsy showed DCIS but very early stage. I am almost through the first stage of reconstruction with implants and am glad that I did the surgery.

It is a very personal decision and not easy to make. I hope that you make the best decision for you.

Sheila

A very personal decision indeed - every person is different in their reasons for having this done. I had grt.grandma, mother and sister with BC - so for me, I was just sitting around waiting for the day - I had PMB/SGAP reconstruction in late May and will have BRCA testing next month. I wanted the surgery before testing because even if I tested negative, I was having the PBM - there is SOMETHING going on in this family! And science has only identified the 2 gene mutations - every doc I have talked to says there are probably 100 more that just haven't been identitifed yet! Take your time making your decision because there is no going back on this one - when you are at peace with your decision, then you will know it is the right decision. Hugs, Cindie

I agree with the others...this is a very personal decision and one that should not be rushed into. Speaking ONLY for myself...I did have a prophylactic mastectomy. I was orignally DX with as stage IIIA, Her2/neu 3+++, Er & Pr weakly positive, 5 of 16 positive nodes, 9 of 9 on Richardson scale. I had the prophylactic mastectomy 1 yr & 2 months AFTER my orignal MRM. I was having pain in my left and ONLY breast and some pain in axilla. (arm pit.) That worried me to death and then my yearly mammo came up and they found two small masses saying it was consistent with lymph nodes in the breast and axilla. I had them do a Ultrasound and MRI...they still said it looks benign but to have a follow up in 6 months. I could NOT handle all this STRESS and NOT knowing. They could NOT guarrantee me it was NOT cancer so I said I want it removed. I could NOT imagine FOR ME going through this every 6 months or yearly. I am am glad I had it removed...couldn't deal with the stress of mammo's and wondering if it was back in the other side. The surgeon did say my path report showed that breast was FULL of hyperplasia. He couldn't believe how much. I guess thats some kind of pre-cancerious cells. It could take years but its still a pre-cursor to cancer...so I am GLAD I did it. But again...this is a very personal decision. No one can make this for you...but your doing your homework and I just suggest you continue talking to others and take your time. No rush. Make sure that is whats right for you.

If you have any other questions keep asking...we are all here for you. Hang in there

Chelee

Quote:

---

I am considering having a preventitive mastectomy. I am looking for anyone with any advice. My grandmother mother and sister all had bc. and have passed away. We did have genetic test done on sister. Did not carry genes but they said somehow it has to be genetic in our family. Any advice would be greatly appreciated.

---

Here's my family story:

My maternal grandmother died from BC in her mid-40's. She put off seeing a doctor and by the time she went in it was too late, it had metastasized (sp?). This was back in 1960.

Flash forward to the mid-70's. My mom, over the years, had a few (non-cancerous) lumps removed and her doctor suggested a prophylactic mastectomy so that's what she did. Very 'radical' way back then but I believe it saved her life because her sister got BC - twice - and thyroid cancer. She's still alive. She has two kids. My sister was dx at age 45, had a lumpectomy, and has three kids. I was dx at age 44, do not have any natural-born children, and had a lumpectomy. I tested positive for the BRCA2 gene mutation but none of my other family members have been tested.

So....if I knew way back when what I know now I do believe I would have had a prophylactic mastectomy but not until after I got it did I believe it was genetic so how was I to make such a decision? My mother is 70 and has not had BC. Now both my sister and I run the risk of getting it again. My story, FWIW.

Jaybird

Rose__my mom is a survivor of ILC of over twenty years now. I hope that bodes well for me (I have LCIS) that she has had such a good outcome.

Yes, I agree with Margaret. Beth is very forthcoming with information and very helpful, not to mention extremely knowledgeable on the topic.

As the other ladies mentioned, it is a very personal and mind racking decision. Once you have made your decision, you will feel much better.

This is merely my choice, of course; but I have chosen to go forth with a proph mast of my other breast next month (had L mast last August). I have choosing this because I am considered high risk and I want the peace of mind.

Best of luck on your decision.
Raye

I was offered bi-lateral mastectomy and I'm glad I said no. I told then if it's not broke, don't fix it. turns out I was right, ALL lymph nodes were negative and margins were clear on both tumors in right breast. They still want me to have chemo and radiation.. but I'm glad I made the choice I did. Listen to your body, that's the message I get reading everyone's posts. be your own advocate.

Hi Minpins! I just saw this thread! I had my PBM on May 7th. My family history goes back to my paternal GM and all 5 of her sisters, my Dad had bc and 2 of his first cousins had ovarian cancers. Our family was tested, including a sample from my dad's pathology and we are all BRCA2+. I went to genetic counseling and was given my risk factor, 85-95%, and several options to follow. They varied from do nothing and keep vigilant to getting an Ooophorectomy/PBM/Take Tamoxifen prophylatically.

I can say, the question of the ooph was pretty easy. I was 42, did not want more kids and neither did my fiance and it was able to be laporoscopically which made it easy to recover from. The Tomoxifen was easy....just a pill twice a day.

The PBM, well, that is very hard to come to a decision. If I was still with my ex-husband it would have been no because I would have had no help from him during recovery. But my dh now is wonderful and he was instrumental in helping me get to a decision because I knew no matter what, he would be ther efor me and that is what swayed me to do it combined with wanting to see my family and friends as long as God would let me.

Don't get me wrong, this is a very invasive surgery. There are all the associated risks. They take ALL the breast tissue, including nipples, just like with someone who has a dx of bc. I was lucky and had the one-step alloderm with saline implants because I could have a skin-sparing procedure. This way, I did not need expanders and go through the fill process. But this has its own recovery problems too. You need to go to at least 4 different places to help with questions:
1. a genetic counselor
2. a breast surgeon
3. an oncologist who deals with bc
4. a good plastic surgeon (get opinions from past patients if you can.

Also, I recommend looking at the FORCE website, www.facingourrisk.org. There are more people there on the discussion boards, including people who frequent here like me, who have had the PBM. Please pm or email me with any questions. Like Raye said, I will be more than glad to help.
My email is bethpknits-pink@yahoo.com

I tested positive for BRCA 2 and had my prophylactic mastectomy (Alloderm One step, non-expander, immediate implant placement)2 months ago. There was up to an 85% chance for me being BRCA + over my lifetime of developing breast cancer, so that was enough to conveince me to do it. In my head it wasn't drastic given those statistics.

Ther eis also something called an "uniformed negativ" which you might want to read up on. FORCE is a great place for all this info.

There are many women over on FORCE (facingourrisk.org) who have undergone PBM. I cannot recall anyone regretting this decision.

Good luck with yours!

I am thinking about having a bilat/prophylactic mastectomy as well. My father and grandfather (his dad) both had male breast cancer, dad's sister has had a double mastectomy, she had bc at 50 & 59 and dad's mother has breast cancer (lumpectomy). My aunt just got tested and is BRCA II positive. I went today and started my testing process, so I won't find out for 4 weeks. I have been thinking about this procedure though for years because of the history and the fact that I have had several biopsies and everytime I go for a mammo they find something to "watch" or take out. It weighs on your mind something terrible. I know it is a very personal decision, and I think I know what I will do if I come back positive, but until you hear the words you never know for sure. I am wondering if I should go ahead and do if even if I am not positive. The fact of have 2 MBC in one family is very rare, there is some type of gene floating down the pipeline.

Laurie

I have a family history but not as extensive as yours, my mother is 6 yrs out but brca neg. As you said I had 2 biopsies over the past 2 yrs and areas they watched every 6 months. After my last biopsy (sept 06) my surgeon suggested the bi-lat to prevent any more problems. I though about it and discussed with hubby, we decided that if I had any more abnormal mammo I would go ahead with surgery. I was dx April 25 with DCIS had surgery with exp/recon june 1 and haven't looked back. You need to follow your 'gut' feeling. I did it to get off the emotional roller-coaster.

Sheila

I, too, am contemplating this subject. I was dx one year ago today and was thinking aggressively by have a mastectomy but I chose a unilateral with immediate reconstruction vs a bilateral. I went through dd AC/T and once I was finished with chemo, I had to have a biopsy of the RB. Luckily, it was B9, fat necrosis, but waiting for test results was so nerve wracking.

I'm just trying to figure out when is the right time.....I'm dreading the recovery period because I've been so diligent in exercising again......that will have to be put on hold for awhile.

I'm also considering an ooph because my IDC was >90% ER/PR+. I did BRCA testing but was negative. The genetic counselor told me she really felt like something was going on in my family (dad had prostate cancer, his sister had ovarian and two of her daughters have had breast cancer)but the gene had not yet been identified yet.

Good luck to all who are considering this decision.

As I wait for my fourth biopsy (3rd this year), expecting it to be similar to the last (LCIS), I considering this same question. I am not opposed to getting a PBM, but would prefer not to have such extensive surgery right now unless my BS strongly recommends it. Two days ago I was talking with a woman I just met and the topic came up. She told me that she had had bc 3 times, the last time 7 years ago. She said that due to her young age, she didn't initially opt for a bilateral, but if she had to do it over, she would. She also emphasized that you have to trust yourself and your own instincts. She feels strongly that she saved her own life because the first and last times she was the one who pushed to have the testing, in spite of being told to wait and watch. The last time, she was told her lump was just a cyst. It turned out to be a very aggressive form which was "hiding" under a cyst. Had she delayed even the few months they urged, she would have died.
If I have one off, they are both gonna go!

Peaches, thanks. "hiding" cancer lesions, tumors, all that "stuff" on the mammograms and mri, it's so difficult to decipher the information once you've seen a surgeon.

I have read research reports indicating a woman can actually have different cancers in the same breast, and some can even be er neg, er pos, trip neg, all at the same time!

Worse yet, one type may occur, and years later another type might appear. For example, IDC, trip neg., and then a ILC er positive, pr. neg, and HER2 positive.

It's madness; chosing, thinking, researching, and believing in the docs; the fear of "not knowing" has and is the worst part of this entire nightmare.

((hugs to all))

Be well, and be loved.

Indi

I am new to this site AND to this stress:(  I have LCIS.  I was not overly worried, some say it is cancer most say it is just a marker. I've had benign cyst removed in the past. BUT I am now getting conflicting advice.  I started taking Tamoxifen in July.  Should I be considering a mastectomy?  I am 55.  I don't need my boobs..I nursed 3 and my oldest is getting married in June.

I'm looking for advice/HELP/comments.  I like my doctor at Cleveland Clinic in Weston but don't love her.

Thanx