Bi-lateral prof mast?
I have posted in other threads since Sept. I am considering a bilateral profelactic mast. I have not been diagnosed but have had 5 biopsies in less than or just about 4 years. I also have significant family history including Mom and Aunt. I have had the BRAC testing and came up with a variant on Brac 2. No one else in my family has had testing so it does tell me everything. I know I do not have any of the major variants they are looking for...but do the others in my family either? The genetic counselor said it would tell us more if others in my family were tested but that is not going to happen. Majority of family members with breast cancer in my family were from age 40 - 50. I think all but one pre-menopausal.
Is there anyone else out there that is/has considered this step even before diagnosis. I am wondering about any feelings good /bad, and how it was done. Any and all advice or experience would be great. I want to know about all ramifications good or bad that I could run into.
Thank you ahead of time.
Vickie
Comments
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Hi Vickie!I am BRCA2+, and had a prophylactic bilateral mastectomy in September. I did have complications with my reconstruction (a failed flap) which led to lots of surgery and a long recovery, but I have no regrets about having done the surgery!! I am so relieved to have the worry behind me! I feel so so lucky to have made it through the BRCA minefield without a cancer diagnosis!Your situation is difficult...it sounds like your results were what would be called "uninformed negative"? Is that right? They found a mutation but are not clear that it is deleterious?You may want to check out the message boards at www.facingourrisk.org This web site is for women who are at high risk, and there are others there who are in the same situation as you - at high risk but not clearly BRCA+Good luck with your decision making! It is tough...
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Thank you Gg08. IBC scare is what started this all. They have come to believe I do not have it but I am kinda done with the whole roller coaster thing. Was your IBC obvious or a sneaky one? DId you have reconstruction?
Smirks44what happened with the (failed flap)? Did they also remove your skin on your breast as well as the breast tissue. (I think that if they leave the skin that is called skin sparing mast?) So for you did they take the skin and all? I am in beginning research for this and am not even sure it is a option. The genetic counselor offered it to me four years ago and I said I would think about it. Now five biopsies later I am considering it and the Genetic counselor at our new base has to go over everything and "approve" it again. We'll see...my husband thinks it is a radical move but he is not fully in this each time I have a problem or get called back. He said he would support me either way but it is not his first choice. I always knew the first time I had anything but normal tissue I was going to do it.
Thank you both,
Vickie
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My mastectomy was skin sparing on both sides. The flap failure was due to trouble with venous flow. It doesn't happen very often, and I was just one the rare few who was unlucky!! The blood flow issues caused the flap to die, so it was removed but the skin stayed. I now have a flap on one side and an expander on the other, skin sparing on both sides. The expander will be switched for permanent implant at the end of April. Then a few months later I will do nipples and eventually tattoos. My sister is also BRCA2+, and is doing a nipple sparing procedure with implants. This seems to be an option that is becoming more popular for prophylactic surgeries.
An awesome resource is "The Breast Reconstruction Guidebook" by Kathy Steglio. It outlines the various procedures and the options for reconstruction. Not all of the options in the book were available to me (she lives in the States, I am in Canada) but the book was an awesome resource and helped me understand my options and make decisions that were best for me.
Tough decisions! Hope that helps! Let me know if I can answer any other questions for you!
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I am sorry that you have to think about this.
I am in the same boat except, I am BRCA negative. I have had multiple lumpectomies, all benign. My mom died 14 years ago. Every year I have the recommended screening and every year something new but not worrisome is found. I am tired of being scared and worried. But also feel that maybe I am too much of a worrier and it would be making a big deal out of nothing. Keep me informed about what you find.
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Smirks
Thank you for your insight. I think I am understanding what you are saying about your flap now. I am hoping if this is a possibility that I can elect what I would like to have. I think I would have the skin and nipple sparing if possible. I am still looking everything up and reviewing what I know. It is in others hands at the moment. I think it will take a couple of weeks before I get any idea of what my coverage will do for me payment wise.
Leslie
I am sorry about your mom I know it was many years ago but if she died of BC then each time you go through a biopsy/lumpectomy I am sure it brings back some pain. Why do you feel you are a worrier. Isn't that what we all do about this stuff. I think everyone I know who has been effected by the disease worries about it. It reminds us that we are not immortal. I think that the worrying works both ways. It can make you really appreciate the things usually looked over. It is stress...period. I look at it this way... each time I have a lumpectomy I am out of the loop on my life. The first week is all about the waiting/ stress. Then depending on how big the lump was your daily exercise routine is out the window. I run, so each time I get cut I am out for two weeks minimum. Docs do not want stitches to bust. Plus it can make the scar worse. I am very tired of the hold button being pushed on my life. If it was every once in a while maybe every five years a scare o.k. I can really deal with that but it has been constant for about 4 years. In between the surgeries are the extra ultra sounds, mammos, and Dr. check ups. It is just getting old for me. That is why I am considering getting rid of the girls. I am done with children so I do not need them for breast feeding. Really they are just accessories...they are required to be there (lovely and plump) by society they are not a medical necessity. I am not sure what I will think when it actually comes down to the decision day but those are my thought for now. Just rambling on to let you know it is o.k./ normal to worry about it. I am sure you and I are not the only ones
Vickie
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Runalot, your variant in BRCA2 is benign, and your test result is really negative. If your mother's or aunt's DNA were to test positive, then you'd know that you simply do not share the risk factor which ravaged the family. Sometimes it is possible to do testing from their tumor samples stored by the hospital. Memorial Sloan Kettering has a program for archived tumor sample testing. But as long as they remain untested, there is a small remaining possibility that their cancers have an unusual genetic cause, undetectable by a conventional test, and therefore you might also be at risk despite you negative test result.
So your GC has got a point. It may make a lot of difference to learn the BRCA status of your mother. Only it may require a special kind of test (tumor sample) and it may be awfully difficult to arrange now that you're overseas...
Did you make the December run by the way?
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Mudt,
Thank you. I have brought up the testing to my mother several times (actually acouple of days ago was the last) with the hint that it would really help out but she is not interested. My Aunt is old fashioned in the same way. They just want it to stay behind them. The rest of the women with BC have all passed away. I did not think of the tumor testing. Would they have to o.k. that personally? I think that the GC if she wanted would be able to move on that? You are right I would not worry nearly as much if I knew either of them had the gene and I do not.
No...I am bummed...I did not get to do the run. I had my excisional bx a couple of weeks before it. The Dr. said no running for two weeks and by then I was not in the same shape. I know you do not lose muscle all that fast but I think it was mental also. I am trying to get another half in this February. I really started back up about 2-3 weeks ago and then fell out of the tree (last week) trying to get an airplane for my son. (I got it ) So I bruised my heel and some of the tendons around the ankle. I am going to try back today I think. I am doing between 3-4 miles with no problem and this week was going to up it to 5-6. We will see. I am in the mind frame that two halfs make a whole...right? I will do the marathon it might just have to be another year.
Thanks for your insight and remembering about the run,
Vickie
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"Old fashioned and not interested", Vickie? What is so old fashioned about making a doctor appointment for a simple blood draw to help your tormented daughter or niece? It is not like they asked to take a great interest in the genes for their own sake. It is supposed to be for your sake.
Two halves
right. Keep your eye on the goal, and best of luck. -
Hi Vickie:
I read this with interest, as I have had bc two times and am brac neg. no family history. But...having had first a lumpectomy, two horrific biopsies (those are inhumane) and now a lat flap mastxtmy, I am absoluted going for a prophy on the other girl.
For one, (frivolous) I do not match, not even close. For the major reason, I am just sick of my life being taken away from me, my time with my family being taken away from me. I can have my boob put back, better than before (I just did). I will not look back. I will have no regrets.
The only damn regret I have is that i did not go for both the first time!!!
Re: brac testing for your mom or aunt will have nothing to do with you whatsoever....it is completely specific for the person being tested, they could both have it, and you not, or you could and neither of them, etc. If they do, your chances are greater, but in the end, the only one that needs the test is you. I had the full genetic consult on the whole deal. Hope this helps.
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Hi Annie thanks for all your thoughts. The more info I get the better I feel that when I go to make a decision I will not wonder if I knew enough. I am just waiting to see what the Genetic counselor has to say. All of my info was put together and sent to her last week. It will take her a while I guess to let us know what she thinks and if my insurance will pay for it. I think a couple of weeks?
I talked to a friend today who's cousin had it done. She was BRAC + and her siblings died in their late 20's early 30's. She did not have cancer yet and was determined to live longer and with out the high stress. The mast is not 100% but it is so much better on the mind. For her there have been no regrets and she never looked back.
Mutd,
I can honestly say I am not sure why they do not get it. I can not pressure them any more though because it is their choice. They may feel better or less pressure not knowing. I can understand it in a way. It does not help me but I understand.
Vickie
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Hi Runalot,
We ran into eachother on the IBC forum....
I just found out that there is BRAC1 in my family. I was told we were negative by my mother and aunt. Then I found a long lost cousin...a first cousin....my mother had two brothers that I have never met for whatever black sheep reasons back in the day....I just met a first cousin that I never knew existed. She is BRAC1 positive. And traced it all back to my grandmother....as I've stated before there are 17 women in my immediate family (my mom is the youngest of 12) that have had breast cancer. I myself am an ovarian cancer survivor (was diagnosed with it at age 31 and my doc presumed it was all genetic but I couldn't afford to get tested at the time). My oncologist suggested a prophylactic double mastectomy...before I turned 35. Well, I turned 35 this past November and it's been on my mind.
Turns out this long lost cousin of mine had sent a big packet of info to my mom and my aunts, asking them to share it with their families. My mother chose not to tell me about it. As did my aunts, the information was all thrown away. I am so upset with knowing this...why would a mother not want her daughter to know of the BRCA1 in the family (especially a mother who battled breast cancer 2x, and her daughter already battling ovarian?) My mother also refused to be tested herself when my sister asked her to, prior to a hysterectomy for some problems (and after my ovarian diagnosis).
I don't understand the stigma or taboo of genetic testing with these older folks. I haven't questioned my mom on this yet...I'm still trying to figure out what I'm going to say...and I know that my anger is probably all in vain as it's not likely to change anything.
But now I am definately reconsidering the double mast. I have had enough chemo - I would rather save the few brain cells I have left and avoid facing it again. To many people that sounds like a drastic choice, to lop'em off and all....but I think chemo and radiation is pretty drastic too. I have an appointment in February to discuss it with my onc. I also would like to get in touch with someone who has had the surgery...hopefully more women will show up here to lend some more information...
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Also, forgot to mention...I always thought I was the first in the family to battle ovarian cancer....turns out there have been two other cousins...one died from it, and the other's was caught early but then she had breast cancer too.
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Vicki, my aunt died in 1978 at age 37 from ovarian cancer, my mom was dx with bc in 2001 at age 57. My mom talked to the genetic counselor and got the test covered by her insurance, her test showed no mutation. I, too, went through numerious mammo call backs for additional views since I turned 38 or 39. In Jan 2005 I had my annual mammo and had what I thought was going to be the usual call back showing cysts but this time it required a biopsy. I was 44 at the time and the biopsy showed ADH (pre-cancer) on the left breast. I had surgery to remove the area surrounding the ADH and was put on a 6 month mammo schedule. July 2006, I had my 2nd abnormal mammo requiring a biopsy, again it was ADH but in the right breast. Once again I went to the OR and had the area surgically removed. My surgeon suggested that I consider prof bilat mast because 'it isn't a matter of if but when it develops into breast cancer'. He gave me some information on the surgery and to think about it for 6 months and let him know at that appointment. The month before my appointment Oprah had Renee Seiler on her show and she discussed her preventative bilat mast due to numerious biopsies for ADH. That show helped me make my decision. BUT at my next mammo, more suspicious calcifications showed up on the right breast for the 2nd time and my decision was made. My doctor said since there were calcifications he had to do a biopsy again and the biopsy showed DCIS.
I know this is long but wanted to share my story of why I did bilat mast. The final path report on the breast tissue removed at the mast showed more adh in both breasts that didn't show up on the mammo.
Sheila
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Vickie,
I found out in Nov 08 that I had LCIS. It's a cancerous marker for maybe gettting breast cancer in the future. Not "really" cancer is what the Dr's said. My choices were bil- mastectomy, or every 6 mos. mamo, ultra sound, and mri w/ dye and tamox. for 5 yrs. I had a 65 to 85 percent risk of getting cancer. Being on tamox. cut it down to 50 percent still too high.
So, on 1/9/09 I had a bil mastectomy with direct implants and feel fine. I had no pain just felt sorness and tightness across my chest. The drains were the worst part.
I'm I glad I chose the surgery? Yes. Regrets? None, I don't need any teatment of any kind. I'm at peace now with knowing I made the right decision. But, it's not for everyone.
Good luck
Ann
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Hi Vickie, I have a friend who's mom and sister died of breast cancer. At a young age (in her early 30s) she had a double mastectomy. That was over 20 years ago and she is still alive and happy and healthy. Given your history, I don't think it's at all overly cautious to be considering such a drastic surgery. In the end, it's your decision and your decision alone. It IS a big decision. I had a double mastectomy one year ago and I only had DCIS. I am sure some people think I over-reacted, but I feel so at peace with my choice. I don't worry anymore. It hasn't been an easy road, though. I had a lot of pain during my reconstruction. I still have weird occasional twitches and phantom pains and tightness in my chest muscles, plus numbness. I think this might not ever be gone, so it's something I am learning to live with. Still....... I would choose the same thing if I had to do it all over again. Do your research. Listen to the women here. There are compelling arguments for going either way. In the end, do what is in your heart and it will be the right choice for you! Hugs, Anne
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Hi Lewisfamily503,
I currently have 5 areas that need to be evaluated with core needle biopsies. I have had three previous biopsies in the past with the last one showing ADH that was removed by open biopsy. I am so sick and tired of mammos (always abnormal and requiring f/u) that I have stopped having them at several points in the past. I realize this is dangerous but it was the only way I could cope while going through a divorce. My BS is recommending bilateral mastectomies with reconstruction. I agree with her but feel I may be jumping the gun. If I require one more open biopsy in the same breast there won't be much left anyway (I am small breasted). This decision is so difficult to make! My second husband is very supportive and says he just want me to be alive, breasts or no breasts.
It is good to hear that you have been happy about your decision and I want to feel the same.
Thanks,
Julie
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Thank you ladies for all your stories and advice. I am still waiting to hear what I will get offered. My hubby is warming up to the idea. He, in the beginning, thought I was taking to drastic a measure but has realized that I am doing my research and plan to make an informed decision. I think his worry was that I was being hasty about it.
Stonebrook you said that you had bilat with immediate implants. Did they do a skin and nipple sparing? Or did they use a different method? The skin sparing was what I am hoping to be offered since I have not actually been diagnosed...I feel the "yet" in my gut. What do you do for check ups. Do they MRI you once a year or US? I am sure they still keep tabs on those that get mastectomies...right?
Vickie
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Vickie,
The BS did skin sparring but not nipple sparring. LCIS go to the milk ducts which go to the nipples. So, she doesn't take a chance with that . Why go though a bil mast. and leave nipples and then maybe it came back into them. No thanks I'll have nipple reconstruction in a few months. Also you have to worry about the blood supply to the nipples. If it's not good they die.
I will every 2 or 3 yrs have to have an MRI to check the implants. Once a yr go to the BS and once the PS that's it YEAH !!!!
I can understand your husbands concern. My husband didn't care if I even had reconstruction he just wanted me to be alright. I always told him "If I ever get bc off they come" But, when your REALLY faced with that desicion..it's not easy.
Ann
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Vickie, I had a nipple sparing and skin sparing mastectomy for ALH and my surgeon said that nipple sparing would be fine for a non cancerous condition or even cancer that was stage zero that was not close to the nipple. She spoke to other surgeons and an oncologist (the one she sent to me) before she said we could do it. I also did research on my own and found there are very few if any lobes or ducts in the nipple and if the surgeon is skilled then what tissue is there can be removed. Cancer can occur with any type mastectomy because you can never remove all the breast tissue. If all you have is ADH then you should be safe with one. I am sure there are other surgeons with different opinions but removing over 90% of your breast tissue is going to decrease your risk more than doing nothing at all. As far as the nipples go if it is important to you than it would be worth trying. Some people have trouble with necrosis but I still wanted to try. They can always remove them if it doesn't work.
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Karen,
How long ago did you have yours done? Did the nipples do alright? I am not sure I would mind losing them if they said not to keep them. I like having mine but I would eventually get over it I think. Especially knowing my chances for being diagnosed went down. I am wanting to do everything I can to get rid of this annual sometimes biannual breast mess. For 4 years I have taken a beating. I would like to give my personal risk a beating back. I want to do all I can to make sure I am here for my family. Sounds like I am being morbid and thinking that I am going to get cancer and all but when I look at my family history and risk it is to me big. Thank you for being open about your experience. It really helps to see all the advice from others.
Vickie
I
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I have a strong family history of breast and ovarian cancer pre menopause. I am BRCA 1 positive. I had my tubes and ovaries removed on 11/20/08 followed by a prophylactic bilateral mastectomy on 12/10/08. I'm in the reconstruction phase now with TE. It's painful but I know there is a light at the end of the tunnel. I'm 45 yrs old. I never look back at my decision except to believe it was the right one. As I've said before...I'm looking at my life ahead of me...not the one behind me. I consider myself a survivor!!!!!!!!
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Vickie, I had mine Nov 19 and my nipples did fine and they never had any discoloration. I only had ALH which isn't cancer and ADH isn't either but I have no breast cancer history in my family and all I wanted a big risk reducer. Most if not all cancers start in the ducts and lobes (more ducts than lobes) and my surgeon said she got all of those. My post op path report didnt show anything else bu ALH and if it did i might have had everything removed. I felt like what I was doing for my diagnosis was drastic enough I didn't want to loose my nipples if I didn't have to. I am happy with what I did and wouldn't take back one day. My worst complication with the surgery was the constipation! If you have it get a good laxative! ( I was also BRCA1 and 2 negative)
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Wow what support thank you everyone for your stories and advice. I really appreciate it all. I have not heard anything back but as far as I can tell it will probably take a while. I have to go through all procedures and chain so who knows. I am waiting on the counselor she has all my info and is going over it.
Thanks again for everything and keep them coming it only makes me stronger with knowledge.
Vickie
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Vickie,
You know, the biannual "Breast mess" turns into "breast exam". Since I had 3 ADH (with some ALH in the mix) and had the BPM with TE's, I since found out from my BS that i will still need clinical exam by her and my family doc, one each 6 months. This will follow with the MRI's that will be needed once my silicone implants go in... the company rec's first at 3 years, then every 2 years, but my BS said that my PS does them yearly! Even though my ins paid for the MRI i had last summer during my work-up, i'm betting they won't pay for yearly, but whatever the protocol is set up by the manufacturer. At least the anxiety over the work-up in progress will be gone, Yeah!
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Vickie, a friend of mine who was high-risk had a skin-sparing BPM after seeing me get cancer. The recovery was very fast, and she feels so relieved at having done this. I wish I had done the same thing. It seems like a no-brainer to me.
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Wow.... what a wonderful string to find the night before my PBS. I too have extensive ADH with no clear margins. I am not big so with all my BS has already taken and then being told she needed to go in again for more.... well... no thanks. I did fret a great deal about making such an aggressive decision but I knew I did not want radiation to damage my tissue if I did need reconstruction in the future and I was not comfortable just sitting out with such "unknown". After 5 pathologists with no definitive answers, I knew it was time for me (after TONS of research) to make the decision for myself. Tomorrow I will have a skin and nipple sparing mx and I am praying so hard that I will not have issue with the nipples nor inner scar tissue so things will go smoothly. I did fret also that when all is said and done and I get the final path report ... AND it shows only ADH, would I regret making such a decision. My answer now is ..NO! I went through such a similar occurance with Cervical cancer about 3 years ago (also pre-cancer) and it kept returning faster and more wide spread each time. There is just no way I want to keep facing this. I want my life back. So....... I will go bigger and better!!! I want this to be the lemonade from the lemons and I will pray this will be the outcome.
Also long posting but I hope this will help at least one person either sitting trying to make this tough decision OR help someone who already has ... know they need to do what is best for their own piece of mind.
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Wbuggie,
I wanted to wish you best of luck with your surgery. This friday will be 8 weeks since my PBM and I feel great. I even started to work again last week.
You'll be fine. Remember don't pick up anything heavy when you get home. It's tough to lift your arms up while you have the drains and everything feels tight. Rest alot and let us know how your doing.
Ann
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Hi runalot08, I'm 39, dx in Lt w LCIS compex sclerosing lesion(radial scar), intraductal hyperplasia and sclerosing adenosis ('tho ultras said CYST),3/08. Had rads, ONC recommended. In 6/08 felt lump in Rt at 3 o'clock. Surgeon couldn't feel, by September he could, had lumpectomy; adenosis(ultras, said no mass or cyst). Shortly after felt lump at 6 o'clock, surgeon said 'it's scar tissue'. I let it go. 2 mos later, it's bigger but now feels rigid/gravel like, and a new one at 1 o'clock, feels real hard, & something small at 10 o'clock feels like a seed. Surgeon can't feel any of it. Mammo & ultras say no mass or cyst. MRI said multiple foci present, enhancement, retest if needed 7-14 days of menstrual cycle, now my Insurance won't cover. My GYN and ONC can feel all these lumps/suspicious areas. My ONC recommends mastectomy, and I've been considering it. She says by the time they do more lumpectomies and already having had the one at 3 o'clcock, my TINY breast is going to be quite caved in. And being that I had LCIS I'm facing eventual mastectomy. I don't know what to do.Good luck to you. And I have a question to anyone that would know, can you NOT have reconstruction on a breast that had rads?
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Tara - The answer is yes, but I didn't have rads so I can't provide the specifics. I would suggest you look around for a PS that has had experience w/ rads and get their opinioin. Best wishes. - Jean
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Hi Jean, So I could still have reconstruction on the one that had rads?
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