prophylactic mastectomy-your input wanted
Comments
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I have almost come to the conclusion that I need to go ahead w/ pmast soon. There are no registries to keep track of this, as there are cancer registries, so I would like to hear from some of you.
I am brcac2+,52, mother and her sister diagnosed about 55 years of age. From what I have seen on this board, most women w/ family history seem to have an age where it shows up each generation. I found mention of this in my internet search as well.
<> Info regarding efficacy of pmast is not abundant. Are there some of you out there who had pmast and have passed the age where it usually appears in your family? When did you have it? This is such a hard decision to make, but other options don't seem too good either. For brca2 the evidence is clear that at least in the short term mastectomy is a great preventive.
I worry too much. I'm concernec about the risk of cancer developing in the remaining breast tissue-which would be in not very treatable places!! Just so much we don't know yet.
Thanks for being here , and I would really appreciate some reassurance.
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TWEEKER,
I don't have any info for you but am going to wait with you for answers. I need the reassurance, too.
Sue
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For me, the decision wasn't too difficult to make. I had multi focal tumours and many positive nodes before routine mammograms picked up anything. I wasn't comfortable relying on the same tests to be any more reliable in the future. At least if I recur it will be much easier to spot as I have also chosen not to do any reconstruction. Actually, I did have a small lump removed from the 'good' side last week and am waiting for the pathology report.
You know that you are BRCA 2 and what the science says about that. With that to guide you, your decision should be based on your comfort level. How comfortable would you be not having both breasts and how comfortable would you be relying on future tests?
Take Care -
Hi Tweek,
I've opted for pmast for my LCIS in June because, unlike most of the stalwart, graceful women on this board, chemo and radiation scare the bejeezus out of me. I'm also in good shape and have good insurance at the moment, both of which could change in the future. Just my two cents. Good luck with your decision.
Carol (AZ)
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Hi there---I too opted for a pmast last september due to mutifocal high grade DCIS in left breast. Lots of factors went into my decision....getting rid of cancer--minimizing lowest posisible risk of reoccurence, fear, symmetry, and beyond. I have no regrets....and very happy with where I am. Had expander exchange 3 weeks ago today....healthy, exercising, walking 5 miles a day, and love my new ta ta's. I will share...that it's a process and one that you need to go into knowing about---there are some low moments and risks with any major surgery. Do your research, ask lots of questions, and ultimately make the decision that YOU are most comfortbale with.
Good luck--Erin
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Hi there---I too opted for a pmast last september due to mutifocal high grade DCIS in left breast. Lots of factors went into my decision....getting rid of cancer--minimizing lowest posisible risk of reoccurence, fear, symmetry, and beyond. I have no regrets....and very happy with where I am. Had expander exchange 3 weeks ago today....healthy, exercising, walking 5 miles a day, and love my new ta ta's. I will share...that it's a process and one that you need to go into knowing about---there are some low moments and risks with any major surgery. Do your research, ask lots of questions, and ultimately make the decision that YOU are most comfortbale with.
Good luck--Erin
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I, too opted for a bilateral mast. even though I only had cancer in the left breast. Mine was aggressive though and I didn't want to risk recurrence in a few years or less. I know there is no evidence to prove that it would recur but for me it removed some worry from my mind. I also reconstructed and am happy with the results. I had a one-step procedure with alloderm and silicone implants. It is a very individual decision but for what it is worth I don't have any regrets. Best of luck with your decision. ~Suze
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Dear Tweeker
I am BRCA1. My sister (then 32) was diagnosed with Breast cancer in 1992 (still living). My mother was diagnosed with ovarian cancer at age 61 in 1994. At that time alarm bells went off and my sisters and I started going to the Familial Ovarian Cancer Clinic in Toronto.
My mother died in 2001 after several recurrencies and a year later I was diagnosed with ovarian cancer. My sisters and I had the genetic testing at that time and I was referred to a high risk breast cancer clinic. At that time the doctor mentioned the possibility of prophylactic mastectomy but said I should find out my prognosis first; in other words, why put yourself through all that if you aren't gong to be around much longer.
He left and I was referred to another doctor and, when I asked her about it, she didn't recommend it. Fast forward to October 2007 and I was diagnosed with breast cancer, late stage three, lymph nodes involved and because the lymph nodes behind the breastbone were involved and couldn't be operated on I started with chemo, followed by surgery, soon to be followed by radiation and Herceptin is also ongoing. I can't have reconstruction until after the radiation and have to wait to make sure it doesn't come back.
So the right mast was prophylactic. I wish someone had hit me over the head and told me to have the double mastectomy several years ago. I could have avoided all of this. I think my doctor should have told me to have it. Obviously hindsight is 20/20 but I was at HIGH risk so why didn't anyone lay it on the line?
My advice would be to have it done if you feel you are high risk. I thought I would be devastated losing my breasts but, surprisingly, I'm not that bothered (I'm 55; maybe that helps, but still was very happy with my breasts!). I'm glad I had both off. I think just having one breast would be more difficult to deal with. This way I have a matching pair.
Best of luck with your decision.
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i was diagnosed with LCIS in Nov 07. After looking over my family history I saw that there was a lot of cancer in my family. In Feb 08 i had a one step alloderm reconstruction which followed a prophylactic bilateral mastectomy. The reconstruction failed terribly and the implants had to be removed. I am not sorry I had the PBM, though. My internal "worry machine" is finely tuned and I felt for my peace of mind this was the best way to go. i spoke to a oncological therapist who put this question to me, "Find out what you would have to do to have the least risk of developing invasive cancer. It it is a PBM, decide if you are willing to do it." The question was so clear, which made the answer easy for me. Good luck in what you decide. We are all very differently wired.
femme -
i was diagnosed with LCIS in Nov 07. After looking over my family history I saw that there was a lot of cancer in my family. In Feb 08 i had a one step alloderm reconstruction which followed a prophylactic bilateral mastectomy. The reconstruction failed terribly and the implants had to be removed. I am not sorry I had the PBM, though. My internal "worry machine" is finely tuned and I felt for my peace of mind this was the best way to go. i spoke to a oncological therapist who put this question to me, "Find out what you would have to do to have the least risk of developing invasive cancer. It it is a PBM, decide if you are willing to do it." The question was so clear, which made the answer easy for me. Good luck in what you decide. We are all very differently wired.
femme -
tweeker--I am not BRCA+ that I know of--have not been tested--but I am high risk due to the combination of LCIS and family history--mom had ILC. I am very closely monitored with MRIs and mammos, breast exams, and have been taking tamox for almost 5 years. Fortunately with relatively mild SEs. If I ever do have an invasive bc show up, I will most likely have bilat. mastectomies. I think it really boils down to how much risk we each can live with comfortably; it's such a personal decision.
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Hi Tweeker,
I have a high incidence of bc in family. I am not a BRCA 1 or 2 +(had test, but only showed a slight difference in my BRACA 2 gene which is not recognized as BRACA 2 +).
Anyhow, I had left IDC but chose bilat mast with immediate recon for peace of mind, on at least a new local cancer.
I have no regrets at all, one less thing to worry about, a very good symmetrical look (SIAE flaps) and natural feel.
My cancer surgeon said that she supported my decision to have bilat,as in any woman with BC there is at least 30percent chance of a new BC and with my high family history of BC at around my age (40) that the risk was likely to be higher. That was good enough reason for me.
Good luck with your decision.
take care.
Shiny
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Mom had BC at 50, mastectomy on one side, then another BC and mastectomy at 51. Still alive at 76. Her sister with one mastectomy at 45 and she died from it at 52. Father's mother with one mastectomy at 60, alive until 90. Since I was considered high-risk, I participated in the Breast Cancer Prevention (Tamoxifen) Study. I'd been followed very closely because of the study and went to a Breast Center every 6 months since I was 41. Though I'd taken Tamoxifen for 4 years as a preventative, was diagnosed at 55 with DCIS in one breast and micro-calcifications with negative results in the other. Basic and comprehensive gene testing showed negative for BRCA mutations. Though I could have opted for lumpectomy and radiation on the one breast combined with Raloxifene, I decided to to ahead with a bilateral mastectomy anyway for family history and peace-of-mind reasons. After surgery, nodes were negative but a swath of atypical hyperplasia was found in the "good" breast. So I may well have been going through this again...
I've read that the remaining breast tissue, post-bilateral, may bring your risk down to as little as 1%...
My younger sister is asking herself the same questions as you but, since she is quite a bit younger than I will probably just "step up" her check-ups; it was also suggested she get annual MRIs in addition to her mammograms.
I'm still in the early stages of a less-than-ideal reconstruction, but I am content with my decision.
Whatever decision you make will be the right one for you. -
CAZ, I too am scared of the chemo and radiation. You make good sense and helped me to make the decision. I do not want to wait until I get cancer and see if they can help me. And it doesn't make sense to wait since I also am in good health now and have good insurance. As you said, either of those could change at any time-and there would go a choice.
Met with the oncologist today and got names of plastic surgeons-still not sure about reconstruction but will switch to that forum now. Thanks so nmuch to all of you who helped.
sueper13, I hope some of this helped you. Actually talking to the doctor about the actual mastectomy helped allay a lot of fears. Best to you!!
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I found out I was BRCA 2+ last year....a month later I had my preventative mastectomy and reconstruciton. I had the Alloderm One Step,,,,,nipple and skin sparing surgery with immediate, non expander implant placement. I lost my mother when I was 4, she was 47 , to breast cancer. I was 42 when I had the surgery, didn't want to test the age of dx theory. I was simply too scared.
I will tell you this- I never live in fear of that breast cancer that took my mothers life. My mind is at ease in that department. Now I need to wrap my head around an oophorectomy. I think I may wait until I am a bit closer to menopause. -
Hi Tweekerbeeker...I am 52..when I was 49 diagnosed with triple negative breast cancer. I had 2 toumors...left breast mastectomy, reconstruction, etc. I had 6 months of chemo, which puts you directly into menopause. However I have a new oncologist & she suggested I go for genetic counselling & consider another mastectomy & my ovaries removed....as a prevention. I was shocked! I didn't know until now how different triple negative is. I have researched it some & find out it usually spreads to the brain. I am now confused...removing the other breast & ovaries..how will this help the brain? I feel I may be going to extremes with all this surgery. I can't find out much about the preventive procedures either. I have no family history of any kind of cancer.
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Tweekerbeeker,
Check out the FORCE (Facing Our Risk of Cancer Empowered) web site at www.facingourrisk.org. It is a site dedicated to BRCA 1 & 2. You'll find a wealth of information there...
Linda
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Hi Tweekerbeeker, I am going throught the same thing as you are now. My surgeon just recomended that I look into a Bilateral Prophylactic Mastectomy. I have LCIS and have had a lumpectomy in my right breast. I just had a mamogram that showed that my left breast is loaded with small calcifications. They biopsied one and it had the cancer marker. My breasts are so dense that they feel there is no good way to monitor these calcifications. I can't do an MRI and biopsing every calcification is out. Reading all these replies is very comforting and helpful. At least I know that I am not alone. This is a very difficult decision and this is one that only you can make. Good luck to you.
Hope
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Hi everyone, I'm a newbie. Had clean mammo in Mar of '07. Found lump in October of '07. Long story short, was breast cancer, so far just in right breast. Had neoadjuvant chemo, 8 rounds, including doing a clinical trial adding Avastin. Tumor (ductal) started out at 3.7cm. Pre-surgical MRI showed 'no remaining tumor'. Surgery found positive sential node, so at lumpectomy time also had axillary surgery, removing another 19 nodes (all but sentinel were clean). Post-surgical pathology report showed tumor at time of surgery, after chemo, was not gone, but was still 3.5cm and has 'lobular features'. Three weeks later found out I had a bad margin and 2 of 3 docs recommended nipple/aereola excision, other recommended mastectomy. Then, today found out I actually had 2 bad margins. Now all docs recommending mastectomy on right breast. Tomorrow go in for genetic testing for BRCA1 and 2 and if positive docs will recommend bilateral instead. LOTS of things up in the air. Somewhat 'upsetting' day as chemo didn't appear to work too well and every time I get phone call, meet docs seems like bad news, but I love docs and trust their hard work and appreciate their honesty. Scared about bilateral (of course) but okay with it... glad to read so much encouraging stuff. Still chance of cancer after bilateral though??? I read if there's any tissue left it's susceptible to further cancer???? Thoughts?? cyber hugs??? Also am wondering about time in hospital, what post-op is like, length of having drains in....
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Hey jennyr - welcome to a great place to get support and answers - you will find amazing help here.
Sorry to hear that you've been through such a trying rollercoaster of a ride with this cancer sh&* - it is awful. Bilateral is a tough decision to make and one only you can really make. My case was much less involved than yours and for me it was an easy decision because I didn't want to live with the 'axe waiting to fall' on the other side. But each of us has to decide what we are able to do to have the best outcome we can. I didn't have a choice on the right (cancer) side as it was all over and I am (well was I guess!) small breasted. I felt strong that I had a choice to reduce my risk significantly by making having the bilateral. I was blessed that I had overwhelming support for my decision and in the end, pathology on the 'non-cancer' side did show ADH. So I feel even better that the choice I made was right for me.
I pray that you find peace to make your decision and feel strong and confident about your choice ~ feel free to pm me if you want - I'd be happy to share my experiences so far in relation to the bilateral.
big hugs to you
Amy
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Hi jennyr ... like you I'm also a newbie ... I had modified radical bilateral mastectomy and I made this decision against my siblings wishes ... In 2000 I was diagnosed with DCIS on my right breast, stage 0. On October 2007, the cancerous cells showed up on my left breast. So it was an easy decision for me to go through with the bilateral mastectomy. After the right breast was removed, they found a lot of calcification in it and my Surgeon stated it was a good decision for me to go through the bi. Family history ... my Mom had breast cancer at age 50 (survived it) and my aunt at age 56 and died after 5 years.
I only spent a couple of days in the hospital and had drains attached, one on each side. They're not too bad just a bit of a nuisance when sleeping. My drains were removed after a couple of weeks but the left side did not drain well. So my surgeon had to aspirate and take the fluids out manually. This worried me for a while. But the fluids all finally drained and the site healed beautifully.
After surgery, you'll probably not be able to raise your arms. There are exercises that can be done which I'm sure your doctor will give you. I also opted to seek the help of a physical therapist to help get my arm movement back to normal. It takes time, but just think that it's temporary and they'll go back to normal.
Hope this helps ... just think that what you're going through is temporary .. and this too shall pass.
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I had a bilateral even though cancer was discovered in one breast. I had a sister and mother who both had BC, the drs. had discovered calcifications of interest in the left breast, and I would have had to have a reduction anyway in the left breast. The decision to have a bilateral was easier for me than the decision to have chemo but I did it and have not regretted it at all. Like reconstruction, it is a very personal decision. Good luck.
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Hi Tweeker.
I also had a bilateral mastectomy. My left breast was the one with the cancer but I knew
from the beginning that I wanted both breasts removed just so I wouldn't have to deal
something happening in my right breast down the road.
My surgeon agreed immediately.
I also went through chemo. DD A/C.
My mother, her sister, their mother all had breast cancer.
My paternal grandmother also had it and had a bilateral mastectomy.
Funny thing is I tested negative with the BRCA test.
I pray my daughter doesn't have to deal with breast cancer in the future.
I did not have reconstruction and love being flat chested. No Bras. No constraints.
Best of luck to you.
Sahalie
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Hi Tweeker
I also chose to have a bilateral mastectomy. The cancer was in my left breast, but a friend of mine's mom had had a unilateral mastectomy for ER+ breast cancer, was on Tamoxifen for 5 years, and 2 years later got a totally different type of cancer ER- in her remaining breast. NO WAY did I want to take that chance. I did have reconstruction, expanders, then silicone implants, but went with only 304cc (approx. B cup) so I( don't have to wear a bra if I don't want to, yet I have enough "Foob" that I can wear cute tank tops etc. The bottom line is, you have to do what feels right to you. Good Luck!
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Hi everyone, I had a bilateral masectomy 4 weeks ago. I had breast cancer in my left breast 3 years ago and had lumpectomy and radiation, Went for regular checkup a couple of months ago and the mamo showed a suspicious spot on my right breast, after mri, ultrasound and 2 more mamos they did a biopsy and it came back negative but radiologist very suspicious of the growth and wanted it removed, so had a lumpectomy, came back a different kind of cancer then the one I had 3 years ago. After much thought and prayer decided to do masectomy and I am so glad as they found a recurrance of cancer in the left breast. The surgery was not that bad but I am having a slow recovery, still sore and still have some fluid. The 4 drains and no shower for a week was the worse part of it all I had peace about my decision even before the surgery and KNOW it was the right decision for ME........Best wishes to all of you....
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I am scheduled for a bilateral mascecomy on aug 1. I want reconstrucive surgery after my treatment. My surgeon discussed this with me but never discussed expanders. Did you meet with a plastic surgeon prior to your masectomy? this is all so confusing to me .
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Hi Pattid3
My experience was breast surgeon and then right after that, plastic surgeon to consult regarding reconstruction. We discussed all the different options. I had already done a lot of reading and knew that I wanted implants and not some of the more extensive reconstruction options. And I had done the research already and know I want the silicone implants.
There are lots of threads in the forums with info about reconstuction and surgery. They are so very helpful. Please priv message me if you want and I can share my experience so far.
Best wishes to you!
Amy
Amy
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Hi patti,
I was fortunate enough to go to a breast center where the breast surgeon (BS) and the reconstructive or plastic surgeon (PS) work in tandem. They organized the reconstruction at the same time as the mastectomy. My biopsy surgeon had lead me to believe this wasn't possible because you couldn't organize a plastic surgeon at the same time. Do your research, and call your breast surgeon if you haven't seen a plastic surgeon yet. Your reconstruction options depend on your body type, the need for additional therapy, and your surgeon. The more you know going into it, the more control you feel you have.
Good luck to you,
Carol(AZ)
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I justy met with a breast surgeon in NY just this past Friday to look at my options...I am 38 and BRCA1 pos....he used to be with SLoan Kettering and he also works with a plastic surgeon in tandem...so consultation with that surgeon also takes place prior to surgery. I would ask in your area again. Good luck
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