Considering bilateral Prophylactic mast signif fam hx
I had some genetic testing done for breast cancer and cancer in general and was negative for all. However, my family history (Mom's side: Grandma, Mom (x2), Maternal Aunt(x2) had breast cancer and died from it. Maternal Aunt had uterine cancer and died, cousin had ovarian cancer and one cousin had hodgkins lymphoma. Dad's side: Aunt and 2 great aunts died from and had breast caner and my uncle had prostate cancer), there is still enough concern that they have suggested a bilateral Prophylactic mastectomy with reconstruction.I had my appointment with the breast care specialist yesterday. I think it went well. The doctor didn't have a definitive answer for me, which was disappointing. She said that she understands why I am considering this option and she went over two other options I have. 1. Do screenings every 6 months or 2. There is a pill therapy that you can get that reduces your cancer risk by about 50%. There are a lot of things that need to be considered. First, I have significant cancer on both sides of my family which is somewhat of an anomaly. This is one of the strongest family histories that she has seen. She said that just because I tested negative and so did mom for BRCA 1 & 2, there might be something genetically that we just haven't found or aren't testing for yet. She said that it would be an easy decision for her if anyone in our family had tested positive because since I tested negative, that would mean I'm not carrying that gene. Second, if I do the screenings, there is nothing preventative about that. It would just theoretically catch it sooner rather than later. She said that if I felt more comfortable, she would let me come to her and have my screenings reviewed by her rather than just the radiologist where I get my mammograms. If I do develop breast cancer, I have to have the surgery with chemo and radiation. Third, the pill therapy has side effects. It can send me into early menopause and I wouldn't be able to have any more children. With the double mastectomy, my risk of breast cancer would be almost nothing. I wouldn't have to do screenings anymore either. I would just have to keep an eye on things on the outside because that is where the changes would most likely occur. At the end of the appointment, we decided that I would meet with the plastic surgeon to get more information from her on reconstruction, healing and risks. I think I am leaning towards the surgery because it seems to be the best chance at not getting breast cancer. I know it will be rough and things will not be the same (body wise) afterwards, but I just think that I need to take the best chance at being here for the girls for as long as possible.
As a side note, I was very close to my mom. Seeing her and my aunts go through cancer treatment was tough, but my mom's breast cancer metastasized into her bones and she died a very painful death. I feel like I will get breast cancer and it is just a matter of when and how soon we catch it. I would really like to hear from anyone with their thoughts on this.
Thanks, Becky
Comments
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Have you considered other possible genetic mutations ? I have a similar situation except that while I tested negative family members tested positive for BRCA1. Many more genetic mutations have been isolated now. I just had a second round of testing of 9 mutations. I have none. My advice would be to do a larger genetic inquiry. You might be carrying another now known mutatio
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Hi Becky,
Sorry about your family history. My mom died from bc also. However, you have a more significant family history of it than me. Its such a tough call but the important thing here is that no one in the medical community seems to think your crazy for thinking about a pmbx. So you have to believe it is a very reasonable option for you. I guess for me, if I could possibly put the subject of bc behind me forever, then I would choose the pmbx. You could also opt to do further genetic testing. In my case, I paid $250 to Color Genomics that tests for 19 genes most known right now for bc. (My mom tested negative for brac and bart). It is a "spit" test, so nothing invasive. My mom was on the pill your speaking of and did have a lot of side effects. I hope you find peace in whatever you decided to do. So so very sorry about your mom. It never leaves you, does it? Many blessings Mary
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MadsandSophs (looks like you have a Sophia/Sophie - I have a Sophia:) I hope you don't mind by commenting: I am so sorry, first of all, for the loss of your mum. It is terrible to see someone you love go through that at any age, at any time.
I am not someone who had the option for prophylactic measures, but for what it is worth, I am someone who has been diagnosed with bilateral BC with no known genetic mutations or family history and chose a bilateral MX - I personally would lean towards the surgery (no haters please, it is just my opinion and feelings). Hearing the words "You have breast cancer," is mortifying, only to be compounded if you already have an insight to the path it can follow, which you do. I did not even really register that it was 'early stage' because in my anxious mind it didn't/doesn't matter - everyone here, on this forum, has read of a stage 1, grade 1, no nodes, chemo, rads and hormonal treatment patient with a stage IV recurrence, albeit rare, it *can* happen. If I had foresight (who doesn't wish that - but you sort of do in this scenario, somewhat.. with the family history?) I would have finished nursing my 3rd baby and had a double mastectomy - no ifs, ands or buts. I chose a MX as I did not want to go through the screening and the fear with every mammogram, I would not be able to put that out of my mind - for ME the loss of sensation in my breasts was a fair trade off for quelling that fear and I know I won't regret it, it was right for me and my mindset.
It is purely psychosomatic; I know mastectomy doesn't completely eradicate the chance of breast cancer or a recurrence, but it lowers it as much as humanly possible (I was quoted 5-6% chance of recurrence within 10 years not sure what it would be for you but your surgeon could answer) As it was, I was 41 and now get to live the rest of my life, however long it is with that fear, those words ringing in my ears with every ache, pain or lump. There's something very significant about that, but nothing I can do to change it, so I will live in fear until I don't. I did not have chemo, or rads so I was 'lucky'; Tamoxifen is alright for me, but many suffer on that drug and who knows what it'll do to me down the road?I don't even think about it - I would love to not take the pills, I am just not that brave. I feel my road was easy in comparison to many other courageous people with BC, but you don't get to pick your road; the sort of BC that you get. I think that is a valid consideration in your circumstance.
On another, more upbeat note, I was eligible for a nipple-sparing MX (NSBMX) - you should be too as you have no cancer. I had no problems with my MX - recovered fast, and I underwent my exchange last week with my new implants and I love them! They look great and feel a natural part of me after just 10 days. I even have sensations in my breasts but again, many don't and that is a true downside and needs to be considered. My BS and PS did a great job and I really happy with that side of things.
My advice to you would be, if you chose the surgery route: make sure your surgeon is a breast surgeon also, if you decide to do a nipple sparing MX be sure your surgeon is very experienced with that operation as there is a 5-8% chance of losing your nipples. I am not a celebrity watcher or in favour of promoting anything but both my BS and PS said I have had extraordinary experience and my PS can not believe how well I healed in just a week: I followed (and my surgeons did too) Angelina Jolie's protocol which you can read here: http://pinklotusbreastcenter.com/breast-cancer-101...
I did not have 2 separate operations with the NSBMX - it was done all in one go, but other than that, I followed everything else.
Again, just my thoughts and feelings, things I have turned over in my head many times in the last 4 months: perhaps you could see your family history as a contrite 'gift' if you will; an opportunity to make a decision that could prevent development of an insidious disease; enabling you to outsmart it, out run it, as you believe it is when, not if. It is indeed an opportunity that your mum and many others did not get.
It's so hard but good luck you will make the right choice for you. Sorry this was so long....Hugs.
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Thank you so much! I appreciate your feedback and the more information that I get from you the better. I wish you well with your healing and prayers that no cancer finds its way to you.
I did have the "spit test" and all came back negative. I was almost hoping something would come back positive to make this very simple. But prayers and God will lead me the way I should go, but your feedback is invaluable and I appreciate it very much!
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Thank you MadsandsohsMom for sharing with us.
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MadsandSophsMom,
I have a similar situation except I am the first of four sisters to get the breast cancer in my generation. On the maternal side our mom is a 2x winner, her sister (our aunt) is a 2x wwinner, our maternal cousin has pancreatic cancer, another maternal cousin has lymphoma, out maternal grandfather died of leukemia, all of his aunts and uncles died of a variety of cancers including two of them with breast cancer. My own sister had thyroid cancer, and two of our paternal cousins had thyroid cancer, my father has had both colon cancer and prostate cancer, on his side we have an aunt who died with leukemia, an uncle who died of lung cancer, an aunt and her son who died of stomach/pancreatic cancer.
With all of this neither my mother nor I were found to have any gene that has been linked to breast cancer. My mother was just tested for BRACA I and II, but I was tested for 21 genes now identified and was negative for all. So. One I face the decision whether to go bilateral or just remove the breast that has multiple tumors ranging from 3 cm IDC, a DCIS of 1.5 and multiple satellite tumors 1cm and under. The total mass is 5.8 by 5.
I saw my mom go through treatments at 50 and at 73. It was so hard on her body. She took tamoxafin for years and then 6 years of Arimadex. She is stil living, but she suffers from terrible back and joint pain related to the treatments. Having cancer once is horrendous. Having breast cancer twice when you can avoid it is unthinkable. Especially when it is attacking the person you love most in the world!
I don't know if I would have had the courage for prophylactic bilateral MX , but I do understand the thoughts you are having. I would say if you don't have the surgery make sure you insist on breast MRIs, and if you have dense breasts, alternate with 3D mammograms every six months. Not annually. I would also get an ultra sound of anything that looks odd. Take control of your screening. Make sure you look at the actual ultrasound as they do it, look at the 3D mammos and ask questions about anything that looks similar to the areas that they say are suspicious. Leave nothing to chance. There are certainly ways to manage this if you choose not to have surgery. You are the one who cares the most about your health. Learn about what you should be looking for in the scans. Don't be afraid any more--be in charge. -
TallnTerrific, thank you so much for sharing. You have an astronomical family history. I'm so sorry you got breast cancer. It is a most horrible disease to see someone go through, especially twice. I'm very appreciative of your information and encouragement. Prayers for kicking cancer's ass and a speedy recovery.
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Tallnterrific - great phrase "don't be afraid, be in charge!" Wise words, thank you.
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I just listened to the news about the American Cancer Society changing the guidelines for the frequency of mammograms. This worries me on one level and on another level, no mammogram, except the 3D ever detected anything wrong with me. Perhaps they should just realize that we each are different and need different kinds of testing. Providers should be expected to evaluate each woman to ID her breast density and to determine what will really work. They have known for years that I had dense breast tissue. They even state it on every pathology report, but they never told me until this year that neither the traditional nor the digital mammograms would show them anything about the cancer in my breast. So on some level I agree that the mammos can be worthless for some of us, but critical for others. I just wish they would recommend appropriate testing for all.
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i heard about the new guidelines too. No clinical hands on exams? Both of my sisters had clear mammograms and their drs found small lumps 3 months later. Shudder to think these cancers would have been missed or not discovered until a self exam sometime down the road! As it turned out one sister died of bc 5 years later. Other sister in chemo at present. I am having pbmx in Nov. It will be 4 months since my clear manmo. Really worried that something has started brewing since then. The next 30 days will be very worriesome waiting for these breasts to be gone!
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new-me------the new guidelines are for people of average risk, not for someone like yourself or your sisters who are high risk due to BRCA +.
anne
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When I found out I had BC (IDC) in late July 2015, I immediately asked for genetic testing. There are 19 first & second degree relatives in my family who have had some form of cancer (other than skin cancers, which I don't count.) My father's mother had cervical, uterine, breast, and colon cancer; her 6 siblings all had cancer, either lung, colon, or breast, or a combination of that. I have a cousin on my father's side who had male breast cancer. On my mother's side I have 2 aunts who had BC before age 50 (one was only 24!), plus several with lung, colon, pancreatic cancers, and lymphoma. I am the second of 4 sisters to have BC and one sister has had uterine cancer.
When the first test came back negative for the BRCA genes, we had a little celebration. Woot! But 2 weeks later the second test came back, which looked for the more obscure BC genes, plus colon, lung, pancreatic, etc, and came back positive for PALB2 and Chek2. PALB2 is the pathway to the BRCA 2 gene. The genetics counselor estimated my risk for BC at a whopping 45%~! Had I known that, I would have had a PBMX several years ago.
As it is, I have had 2 lumpectomies (before we knew about the genes) and I am now going through chemo. Radiation may still be in the cards. I will be on estrogen suppression for at least 10 years. There is no way of knowing whether I will have BC again--having it once makes me susceptible to having it again, even without the bad genes-- so I'm planning to have the BMX after chemo is finished. I wouldn't wish this on anyone.
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I am considering bilateral prophylactic mastectomy with reconstruction due because I tested positive for the Braca 1 gene and just had my first scare with a papilioma which is benign but still needs to be removed. I am interested in hearing from woman who choose to do this surgery electively and if they were happy with their decision. I would like to here about the recovery,, any depression as to losing your own breasts, any complications etc. I would really appreciate any help. I am currently going through a very stressful divorce as well. I have so many different life changing events going on at the same time. One breast surgeon thought I should to this at this time since it is the one aspect of my life I can take control of. He also felt the amount on ongoing stress relating to my divorce might increase health problems down the road and does not ant to see be back there 2 years later with breast cancer and battling chemo as well ass doing the surgey.
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LP60, welcome to BC.org, and sorry for the tough times you're going through. We understand that yours is a difficult decision-making situation, so we hope we can help you in the process. Here is an article that describes some of the pros and cons of prophylactic mastectomy and what to expect: Prophylactic Mastectomy | Breastcancer.org
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Hi LP,
I tested positive for BRCA2. I never had any type of cancer and since I am approaching 60, I decided I am playing with fire (the older any woman gets, the greater the chance for getting breast cancer). The 6 months that passed from the time I learned I had brca to the time of the prophylactic mastectomy (just done this month) were agonizing. All I thought about was BRCA and cancer. I had 4 consults with 4 different breast surgeons and 4 different plastic surgeons. I knew from the start that I wanted diep flap since I didn't like what I researched and heard about implants. The idea of a "tummy tuck-like" procedure had great appeal for me as well. I have been living with a big belly relative to the rest of me all my life. Plus I did not want the "upkeep" involved with implants. I am at home recovering from bilateral mastectomy with diep flap reconstruction (it actually converted to a free tram flap as the surgeon had to remove a small piece of muscle on 1 side).
I did nipple sparing and they are not looking too great at this point..hopefully the survive, but will know more at my post op visit. All I can say is that I am totally relieved that this is history now and that I can recover and move on with my life without obsessing over brca and cancer. Of course, there is a small chance I could still get cancer but it is less than the risk for the average woman (I was told 5% lifetime risk of still developing cancer in the remaining breast tissue, as not every single cell can be removed).
I suggest you read up a lot online (there is a lot of information online from the American Cancer Society and the Susan G. Koman foundation, and other reputable sources) and DEFINITELY see at least 2 surgeons for opinions. All of this will help you make a decision that is right for you. Best of luck with whatever you decide!
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Ramonica, did you have an oopherectomy as well? We crossed paths in another thread-- I'm still awaiting BRCA results, but think I'd go this route as well if I turn up positive. It's frightening to me how this gene can get hidden in small families with few female relatives (which describes my family). Hope you recover smoothly and quickly with beautiful results
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The oophorectomy surgery is an easy surgery if you can have it done laparascopically. I felt fine immediately afterward. No problems at all and I did not have to take any pain medication. I only had a bilateral salpyngial oophorectomy. I did not have a hysterectomy.
Good luck.
I am glad that the mastectomy and DIEP flap/TRAM flap went well. I hope that your post op visit is positive.
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I'm probably not on correct thread but any words of wisdom.
I get tested for the Brca1/2 gene and full panel.
I've already thought of what I need to do. My gut says I'm positive. Since my cancer journey began I've always been in the 1% it always happens.
I'm looking for info on having a double masectomy first with no reconstruction. The thought of having surgery again and continuing this journey has me in a tail spin. Then I'd have an oopherectomy.
I have 2 kids 22 and 25 and the though they might test positive is breaking my heart.
Sorry to ramble just need to vent.
I'm doing a lot of crying too.
Thanks
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Hi momo, how long have you been waiting on results?
I get tested tomorrow. I am 5 years since my original dx and both oncologist and genetic councelor have advised getting tested.
My mum passed away recently frim pancreatic cancer so I think this kicked the conversation off. Mt mind is all over the place and I find myself going g to a dark place.
I to have a small family. My mum lost her mother and grand mother in world War two. It's just me and my sis. I'm the only one that has had bc. So I'm pretty limited on female family members to.
Hoping you get good news!
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My mind wandered just like yours when I got tested. I have a sister and 2 daughters. I couldn't help but think what if they get breast cancer too? I cried a lot but yet made it through the wait. All of my genetic testing was negative. I was very relieved to have one less worry on my plate. As far as surgery thoughts, I was expecting a double mastectomy and possible oopherectomy. But as things have changed with my diagnosis and through chemo, a double mastectomy won't do me any good due to a lymph node under my sternum that is involved. I may still get an oophectomy. My oncologist is wanting me to try Tamoxifen first. I'm still considering the oopherectomy.
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Thanks and great news on the negative test.
I've been on tamoxifen for 5 years. It's do able.
Thanks for responding. I feel calmer when I hear others stories and know I'm not going alone on this journey.
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Swanseagirl, I got tested on 12/8. Early last week I got letters from my insurance notifying me that the BRCA portion of the panel was approved, but the second, more extensive analysis was not. It turns out that the results from the first part are back, but my follow up with the oncologist who ordered the testing is not until mid-February. This waiting is excruciating and driving me crazy. I've spoken to Myriad to get them to send results to my PCP, but I don't think he's received them yet. I really don't think I should turn up positive, but you never know. Scary stuff
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Hi momo
Why did you get tested for brca?
Any family history?
Sitting waiting to be called to get the blood work done. Feel sick with nerves.
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Genetic testing was recommended by new onc (old one died) based on maternal grandmother possibly having had ovarian cancer (at 80). No one really knows for sure. Testing had never been recommended to me before and this doctor's desire for me to get it done threw me for such a loop that it never occurred to me (until afterwards, when it was too late) to ask for genetic counseling first, which is the usual procedure. Oh, and I am also Ashkenazi Jewish, so there is that factor. In retrospect, I'm very angry that I was kind of railroaded into doing this. There is no hx of BC at all in my family.
I have spent the day fighting on the phone with Myriad, trying to get them to release the results to my PCP so I can finally know what's what. Thus whole ordeal is making me very anxious and upset-- I wonder if it was really necessary.
Swansea, I totally get the sick with nerves thing.
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Hope the fighting on the phone went your way..
Got the test done. Made appt with genetics councelor for January 20th to go over the results and put a plan into place.
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Ha! Well, I wish I could say that the phone calls to Myriad accomplished my goal, but all they could tell me is that they are backed up from the holidays-- I guess to the extent that no one is able to press the "send" key to forward the results to my doctor. Extremely frustrating! I fluctuate between feeling quite confident that everything will come back negative and then feeling I will have the bad luck, despite the odds, of carrying a BRCA mutation. I don't do well in this extended state of limbo...
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Hi all,
I started this thread because I was considering going through the prophylactic double mastectomy. I completed it on January 18. The surgery was much harder than I imagined and the healing has been longer. I developed some necrotic tissue that they are still watching on my left breast. No one can really describe what you will feel like after your breast tissue is gone. The tissue expanders are so hard and uncomfortable for me. I go in for my second fill tomorrow and am hoping to get these done so that I can get the second surgery over with. I feel so relieved that I don't have so much to worry about anymore. If you are working and plan to have this done, I would plan to take at least 3 weeks off. I went back to work after two and a half weeks and it was too much. I didn't even work full days and I went home in tears. I have a very sedentary job too. Week three post op was pretty exhausting also, but it's getting better. To anyone considering this, there are a lot of things that the doctors don't tell you and a lot of things that they cannot answer...as to why something feels a certain way. Good luck and God Bless you all!
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OntarioJoined: Feb 2016Posts: 1JuiceyMoose wrote:
Hello,
I am very new to all of this, so I have been doing a lot of reading over the past few months. Scholarly journal articles and discussion board responses from women who have been classified as high risk for breast cancer but have tested BRCA negative are my nightly reads. Living in Ontario, I am a patient of a high risk breast cancer clinic at a hospital in Toronto (and will have been for a year in July). Up until the death of my father three years ago from cancer, I never gave the cancer trend in my family a second thought. I still didn't until a year ago when I finally heeded my sister's advice and went to see a genetic counsellor. On their advice, I was enrolled as a patient in their high-risk breast cancer clinic.
My sister and I sought out genetic testing at the MedCan clinic in Toronto this past August and both tested negative for BRCA 1 & 2, but positive for another mutation related to colon cancer, and had a VUS on another mutation. On my paternal side I have a father who is deceased from cancer at age 65, his mother (my grandmother) having a partial mastectomy and lymph node removal at age 53, and death from stomach cancer at age 70, an aunt (his sister) with breast cancer at age 68, his grandmother with breast cancer at age 43, along with his uncle and grandfather with colon cancer deaths at age 55, and 70. My mother has also had a full mastectomy at age 50.
In the report or summary of results that I received from my genetic counsellor one of the topics discussed was the suspicion of a family cancer syndrome on my paternal side. Recommendations that were suggested as an option included a preventative prophylactic mastectomy. I am looking to see if anyone has taken this path and I am wondering about your experience in the Canadian medical system?
I have a meeting with a plastic surgeon in March and from there hopefully a referral to a general surgeon. As well as a meeting with the oncology doc at my high-risk clinic in April (although I really don't get the impression that they want to talk to me about a preventative mastectomy at all).
Any insight you could offer would very much be appreciated.
Thanks for your time
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Were you tested for the gene mutation NBN? I have a very strong family history of breast cancer and tested positive for NBN mutation. All of my maternal aunts (2) and my mother had breast cancer and later died. I had my mother bank her blood in case another gene mutation was discovered (she did not have BRAC). Her blood tested positive for the NBN mutation. All of my maternal cousins (4) have/have had breast or prostate cancer, linked to NBN and 2 cousins were tested and found to be NBN positive. My youngest sister is also NBN positive. My younger brother tested negative. My younger brother has had colon cancer at age 54 and my younger sister died of colon cancer at 55.I had a prophylactic bilateral mastectomy on Sept. 9, 2015 with reconstruction started. It is now Feb. 28, 2016 and I have to wait until March 24th for my implants, due to having to have my expanders replaced because of a leak and not loosing my drain tubes until Dec. 29th! I do not regret the mastectomy but I hate the pain and discomfort of these expanders. Reconstruction is not for the faint of heart. Good luck with your choice.
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MadandSophsmom, i am right tghere with you. I had BMX done Feb 4,2016, and it has been much harder than I thought it would be. Heck, I've only just started driving on my neighborhood this week. Only been off Percocet for a week and still need sleeping pills every night. I lost a huge chunk of the right mound to tissue necrosis; I've had a wound vac attatched for a week now.. Two steps forward, one step back. At 3-1/2 weeks and everything exhausts me.
I really thought this would be a piece of cake, since I didn't have traditional recon. Thank God I didnt, because I would have ended up in the hospital with all the tissue necrosis.
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