Prophylactic Mastectomy questions

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sdekans1
sdekans1 Member Posts: 4
edited June 2014 in High Risk for Breast Cancer


Hi all


So I just recently tested positive for the brca1 gene mutation. I meet with my genetic counselor on the 18th to discuss what steps I will take next. Since before even taking the test I knew that if I tested positive for the mutation that I would have a prophylactic mastectomy. And I'm not going to lie, since I tested positive that step has become very hard and emotional but I know that this is definitely the right decision for me. Since I haven't even met with my doctors yet I don't know much about what happens next. I've been doing research and trying to educate myself so that I don't walk into my appointment completely in the blue. Most of what I've been reading on here has been super helpful. But I still have some questions... most of which I know will be answered on the 18th butttt I'm a little impatient and am curious to find this stuff out asap. For instance, now that I know Ive tested positive and I want to have the prophylactic mastectomy, how long will it take before I can actually have the surgery? I know I will have to meet with my doctors and everything but I'm just curious to know if I'm looking at something that is going to happen relatively soon like within the next couple of months? Or does this process take a while? I suppose I'm just a little eager to get this part over and done.


I've also been looking into the reconstruction side of things and I think I may have an idea of the procedure Id like. Originally I thought I'd get the implants. I know that it's a bit of a quicker recovery but I don't like the idea that I'd have to have them replaced in the future. Also how real do the implants look? I've also been looking at DIEP, which actually sounds like a good option. But between DIEP and Implants, I'm just not sure yet what to do. Any advice, tips, suggestions? I read that with DIEP there's more of a recovery time but that it is only one surgery. How do they feel/look? As far as recovery times go with either surgery, when can you move around and drive and slowly start to get back to normal day life?


I hope none of this seems silly, the reason why I ask is because I'm in a long distance relationship which involves a lot of traveling. We plan to get married within the next year as well and I will be moving up north where he lives. We are both prepared to handle the surgery and everything that comes with it while planning a wedding. He has been super supportive and amazing actually through this whole process and I know it may be a bit rough but I need my life to continue on as planned. I don't want to put things on hold or stop living my life because of this. So I'm just curious as to after the initial surgery when will I feel or start to feel like myself again? And if it's something that takes several months to plan out then maybe it's best if I wait until after we get married. Although I would much rather get this done sooner rather than later!


Any other advice or information would be wonderful! I appreciate all of your input!


Thanks so much!


Stephanie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    Oh, Stephanie,


    I'm SO sorry you find yourself faced with all of these decisions and worries. This site is such a great place for support and info! I would encourage you that once you have your surgery date you should join the group for surgeries in that month. You'll also want to join the reconstruction threads for whichever procedure you end up going with.


    I can't answer all of your questions. I can just share my own experience. When I met my surgeon to discuss my options she immediately told me that I would only be a candidate for implant reconstruction as I was too thin to have enough tissue to make two breasts. Be prepared for that. Also know that your particular surgeon may have a preference. Not all surgeons do all types of recon. you may have to shop around for a surgeon who can do the type you want, but be very sure he/she has a lot of experience performing that type of recon.


    I had my BMX and tissue expanders were placed at the same time. I do not think I drove for 4-5 weeks. It took a couple of weeks before I could get out of bed or out of the recliner without help or loads of pain. I gradually got stronger and also gradually got the anesthesia out of my system. It took about 6 weeks to really feel like myself again. Meanwhile my tissue expanders were being filled. I didn't have much trouble with that process, but I did have to sleep sitting upright in our recliner for 3-4 months. I had my exchange to implants in February. My silicone round mplants look quite natural. I'm pleased with the shape and feel of them. Two weeks ago I had a revision to smaller, different styled implants. I feel much better with these and am ready to move on. In a few months I will get reconstructed nipples and then a few months after that I will have areola tattoos. If things go as planned I will be done about 1.5 years after I started. Candidates for nipple sparing will not take as long I'm guessing. I chose not to keep mine.


    I think what you need to know is that it can be a lengthy process even if all goes smoothly. I do not know how differently a completely prophylactic experience will be. Hopefully some ladies can chime in on that one!


    Keep asking questions and keep reading here! Explore the different recon threads, but do keep in mind that there is a greater percentage of "problems" posted. Many women that have positive experiences don't hang out on the boards. So please don't assume that everyone has a negative experience! But it is good to know the risks.


    I wish you all the best! It's not an easy thing, but there are LOTS of women walking around us every day that have been here, done that, got the t-shirt and are still smiling!!!! Hugs to you!

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited November 2013


    Before you do anything you should meet with a breast surgeon AND a plastic surgeon. Please explore all of your options thoroughly. You have time to think this through. Researc, research, research. Look at pictures of reconstructions online and in your plastic surgeons office. You will not be driving for several weeks after surgery; it is not an easy recovery. If you can wait until after your wedding, I think you would be much happier. Also, check out the FORCE website, which is full of information for those of us that are BRCA positive. Www.facingourrisk.org.

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  • DiveCat
    DiveCat Member Posts: 968
    edited November 2013


    I recommend picking up The Breast Reconstruction Guidebook (Kathy Steligo). It is a great guide! Be informed. Do not rush, you do have some time. What recon is right for you is only something you can determine, along with your doctors. There is no right answer that applies to all! You can also have wonderful results with any method...failures with any method...or bad results with any method. You do not want to rush this!


    Your GC will review options, but actually planning your surgery will be done with a breast surgeon and plastic surgeon. You may need second and third opinions. Timeframes depend on what you choose, where you go, the schedules of the surgeons, your own schedule, your own health, where you are (wait times in some centres are longer than others) and so on. I met with my BS yesterday to start the process, and am waiting to meet with PS now. It will be 4-6 months before my own surgery, but universal healthcare can be a bit slower for non-urgent things and the two busy surgeons need to figure out when they can be in the same operating room at the same time. The timing works well for me anyway. I am doing implants, but still weighing TE to implant, or direct to implant. I have been offered nipple sparing, but am likely just doing skin sparing. If I do TEs....the process can be a year or so. If I do skin sparing direct to implant, it could be about half that. Or more. Or less. The book I told you about gives some general timeframes.


    Recovery varies. Some have little to no complications and recover quickly, others do not. There is no guarantee even with a PBMX you will not have complications. A young woman on FORCE recently posted that she had her PBMX this summer with TEs placed but her recon failed in September so they had to remove the TEs and she is trying to decide her next steps, she is currently flat. Of course, this is not the majority result, but if you have a wedding coming up you might want to weigh risks of dealing with an infection at a donor site, or losing an implant, or whatever else around that time.


    Do check out FORCE.

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  • KarolineH
    KarolineH Member Posts: 40
    edited November 2013


    Stephanie,


    I agree with all the above responses. I had my BMX in May of this year and had my exchange in September. I went with silicone round implants 550cc's with the help of whippetmom (who is an amazing resource to all). I was diagnosed right after getting engaged and put my planning on hold out of anxiety fear you name it. I just had my pre surgery testing today for my nipple reconstruction which is on Dec 3rd. All in all I have been lucky with no major hiccups but it has been difficult at times. Finding this site and posting concerns or questions has been a blessing! Just "lurking" at times can put you at ease. Just remember to always post what your wondering or thinking; there is always someone here that has gone through it too. I wish I had posted earlier but I was hesitant. I am 7 months out and I feel great for the most part. My wedding date is set for November 29th, 2014 and I am having fun planning now! It gets better, I promise:)

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  • Jackiegray
    Jackiegray Member Posts: 69
    edited November 2013


    Hi everyone


    17 months ago I had biopsies on both breast. Pathology was ALH. Recommended treatment was 6 month mammograms and breast exams. 1st mammo was all good. 2nd follow up mammo showed 3 large clusters of microcalcifications. I had an open excisional biopsy Monday. BS removed 11/2" mass of tissue from my right breast. Preliminary path is back ADH. I have a strong family history (Mom, Aunt) of BC. Surgeon has given me 2 options wait and see continue 6 month mammos, or bi-lateral nipple sparing masectomy. I had a brain tumor 7 years ago and have DVT. I can not take tamoxifen. I also have Lupus. I am leaning more towards the NSM due to I feel I am fighting a losing battle. In less than a year and a half I have had a total of 5 biopsies. This set of microcalcifications were larger and more spread out and grew in a short period of time. I feel like it is only a matter of time before it is DCIS and I will no longer be a candidate for the NSM.

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  • spoonsandarmor
    spoonsandarmor Member Posts: 2
    edited November 2013


    Hi Jackie - I just had a bil mast without reconstruction. I had a positive biopsy for ADH in September and I also have an autoimmune disease Takayasu (vasculitis). I was told by my rheums at Duke that I needed to try to limit surgical procedures due to my immunosuppressants and that radiation and tamoxifen would not be options for me if the lesion was DCIS. That is how I came to the decision to do the bil mast. I am 41, had had 2 mammos and had already needed 2 biopsies - and have other mild family history. Overall, they put my lifetime risk around 50% and that along with my issues with the treatment (rads/Tam) if I DID get it, made the decision less difficult. I just started a blog if you find it at all helpful. www.spoonsandarmor.wordpress.com. Best of luck to you.

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited November 2013


    I had PBMX in June., with TE placement. In October I exchanged them for Mentor MemoryShape silicone anatomical implants. I didn't have the option of a flap procedure, as I was told I was too thin and there wasn't enough tissue to work with. Recovery from the initial surgery was pretty rough for a short time - I did not anticipate the level of pain that I had, and the ineffectiveness of the medication I was taking. I had 4 JP drains, which were all removed on day 6 after my surgery. I was out of work for a total of 2 weeks. The soreness lasted a while, and I found that ibuprofen worked much better on that than any of the narcotic pain meds. My PS also prescribed Flexeril, which I would take at night to help with the muscle spasms that seemed to happen late in the day.


    I'd say I was back to more or less normal in a month. I am a runner, and I started slowly, but was able to get back to it in about a month. I drove myself to have my drains removed - maybe not the smartest decision ever, but I would have walked there if I had to!


    The TE fills were sometimes painful. I like to compare it to getting your braces tightened. Hurts for a day or so and then gets better. The last fill was the worst, and I was sore for several days.


    Recovery from the exchange surgery was a breeze. I had my surgery on a Thursday, drains out on Tuesday (after a Monday holiday) and back to work the same day. I was cleared for normal activity within 3 weeks.


    As far as appearance - I am happy with them. Aside from the scars, and without touching them, I think they look pretty real. I went a bit bigger, and I am happy that I did. My PS is an artist and did a fabulous job! I can honestly say I made the right choice for me and I wouldn't change anything at this point. I realize that I pretty much had a best case scenario so far and there is always the possibility of future problems that require additional surgery, but I'm ok with that. I'll cross that bridge when/if I come to it.


    I wish you the best. In my opinion, you are making a very brave choice.

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  • jodeywd
    jodeywd Member Posts: 2
    edited November 2013

    I have my PBM scheduled for 12/10/13 and scared to death.  I'm BRCA2+ and have been putting this off for 2 1/2 years.   I'm glad I found this site to hear some good news.  I've spent the weekend on U-tube watching other peoples documented experiences and all had complications that has scared me to death.  My biggest fear is my upper body strength.  How are you all doing with that?  I have a very physical job that requires heavy lifting, pulling etc.  In addition, my passion is mountain bikeing.  Will I get all my strength back?  Partial?  And how long will it take?  I've planned to have 2-3 months off work.  Is that enough?  Would love to hear from anyone----good or bad.  Thanks!

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited November 2013


    jodyewd -


    I think I have recovered 100% of my upper body strength. I started going to they gym a few months ago, with a 3 week hiatus after my exchange, and now I am about where I was before the exchange. Going to the gym for a quick workout each day is completely different from having a job that requires constant physical strength, though. But I can honestly say that now, almost 6 months out from my original surgery, I feel as good if not better than I did when I started.


    My BS told me to expect a 4-6 week recovery period, and actually told me I'd need that much time off work. I was like - "Yeah, right. Not happening. I'll be back in 3". Turns out I was back in 2. And realistically could have gone back sooner, but it was June and soooooo nice out, that I was enjoying sitting out in the sunshine.


    I think being in good physical shape before you have any procedure puts you in a better position for speedy recovery than if you are not. Certainly it can't hurt! That was my theory anyway, and I spent the months before my surgery trying to become as physically strong as possible.


    I wish you all the best. You are a brave lady. You'll be out there mountain biking in no time!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2013


    Jodey - I too was very concerned about losing strength. I do think because my pecs were very strong to start with I had quite a lot of pain from asking them to stretch. But stretch they did. It did take a good 6 months to get back to where I was. A good day for me now is using the chainsaw for several hours, dragging around branches, moving heavy stuff. I have no limitations. Also I followed all my PS rules to a T. I had no issue with healing.


    It does feel different, but it is ok, and it becomes the new normal. The most wonderful thing will be to wake up from surgery and know you dodged the C bullet. You got this!

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  • LAstar
    LAstar Member Posts: 1,574
    edited November 2013


    Hi, Stephanie - I hate that you have to make this hard decision. I wanted to mention that the flap reconstruction procedures can take two or even sometimes three surgeries to complete. The first surgery involves the mastectomy and moving the tissue from the donor site. The second surgery involves revisions for symmetry & fullness (which might involve lipo in other areas to obtain fat for grafting). It will be great to talk with some plastic surgeons about all that is involved and to see some results photos. Results can vary widely among surgeons performing the same surgery. I wish you the best in your journey & in your marriage next year!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    I love biking. I mainly ride Rails-to-Trails...so some rough spots, mainly gravel/crushed limestone/dirt. My first exchange ended up being too big. I rode through the summer with those in. Totally doable! I realize what you do is more strenuous. I just had a revision to smaller implants and LOVE them. The only issues I had with biking is that if I gripped extra hard or only had one hand on the bars my pec contracted and felt kind of weird. Still doable!! But that issue has gotten better too with the smaller size.


    I know with mtn biking you have more more weight on the bars, so the pec thing might be a bit more of an issue. But it never has hurt, just feels a bit odd. And you may want to try to stay close to your current size just so stuff doesn't get in your way. ;-) Of course all of my experience only applies to my type of recon. I did bmx to TE's to implants. I did not ride during my TE phase as it happened to be over the winter.

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  • jodeywd
    jodeywd Member Posts: 2
    edited November 2013

    Thank you everyone for responding so quickly.  You have given me inspiration and hope that this will go well and I'll be back to a normal life soon. 

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  • respectnfreedom
    respectnfreedom Member Posts: 2
    edited November 2013


    I am so happy for you that you have this opportunity to have a prophylectic mastectomy and your various options to reconstruct or not etc. When people ask me about how difficult was the mastectomy, I can confidently say it was just a flesh wound that healed in a week. I'm downplaying the whole thing a bit but compared to the mastectomy + chemotherapy + radiation + hormone therapy + lymphodema + the 6 month prognosis that its taken me 6 years to overcome psychologically + depression, and no reconstruction due to the ongoing treatments, I would encourage anyone to avoid all that and go for the early mastectomy. Best wishes xx

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  • Jackiegray
    Jackiegray Member Posts: 69
    edited December 2013


    since my last post final pathology is in...each of the 3 sections carried a different pathology. ALH, ADH AND LCIS. BS has referred me to a specialist in downtown Cleveland. My appointment is Monday. It has been 4 weeks since my surgery I have a HUGE hematoma that is quite painful. I am exhausted I can't sleep because all I think about it is how can I make this decision? My head tells me I'd be insane to not have the PBMX. Then my insecurities take over and I think there's no way I can go through with this. I met with my BS on Wednesday she tells me it isn't a question of if you get breast cancer it's a question of when? What is wrong with me this decision should be easy?

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2013


    Jackie - I'm sorry you are having to go through this. If you haven't already you might consider a second opinion to help you get your thoughts in order. IMHO those of us who find out about the tissue changes are EXTREMELY fortunate. (ok, my PBM didn't turn out like I wanted, but anyway . . . ) We know we're at risk. 95% of the women on these boards would be happy to trade places with you.


    It helped me to realize I had to play the card I'd been dealt.


    I wish you a wonderful night's sleep. Things always look better after that. Try some melatonin. It has helped me. If I can help let me know. Gentle hug.

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  • Jackiegray
    Jackiegray Member Posts: 69
    edited December 2013


    thank you farmerlucydaisy you are the second person who has told me (the first being my BS nurse) a woman with BC DX would trade places in a heart beat. 2nd opinion on Monday. More people have seen my breasts in the last 4 weeks than in my whole life! Ugh!

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  • Pamela44
    Pamela44 Member Posts: 143
    edited December 2013


    I had a DEIP pBM. Best decision I ever made. They look beautiful and real. The skill of the surgeon for this procedure is very important. One surgery for mastectomy and transferring the flap and then three months later a smaller surgery to sculpt the flaps and I was done. I had no complications and was out of the house four days after surgery #1. And I was 58 when I had it. Pm me if you would like.

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  • Jackiegray
    Jackiegray Member Posts: 69
    edited December 2013


    I feel incredibly blessed to have 'met' you all...at this time yesterday I was overwhelmed. Today I feel empowered by your support and honesty. I am so thankful to each of you and am actually looking forward to my appointment with the surgeon tomorrow.

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  • owlwatcher
    owlwatcher Member Posts: 130
    edited December 2013

    Regarding diep-my ps said that first you should try and use the skin left over from bmx with tissue expanders then if that fails then do diep. he said that if you go straight to diep you are throwing away the skin on your chest which might have been  a valid option for some people.

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  • LAstar
    LAstar Member Posts: 1,574
    edited December 2013


    Skin-sparing DIEP and other flap procedures are performed.

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  • Bibo
    Bibo Member Posts: 4
    edited December 2013


    I am 45, and just had weight loss surgery in May. One of the reasons was that the kinds of cancer my family had were fed by estrogen, which is stored in body fat. That was a relief in and of itself.....when I got within 20 pounds of my normal body weight, I had a prophylactic bilateral mastectomy with reconstruction in August...just had the exchange surgery in November, two weeks ago. I did not do nipple sparing surgery because I was going for peace of mind. I had too strong of a family history to fool around with that. The mastectomy HURT...I strongly recommend getting a clear pain management plan worked out with your doctor. My plastic surgeon actually did my mastectomy, which was really nice, cause we were on the same page in terms of cancer prevention, but he was used to plastics, and not pain, so i wound up getting my primary to talk to him before my exchange surgery and worked out something that would work for me, as my weight loss surgery restricts the use of NSAIDS, and toredol....My bariatric surgeon recommended using IV Tylenol (non narcotic) and that was great for the exchange surgery, with some diloted....and percocet to go home with (which i did not use all of). The surgeon wanted to use toredol and morphine, but that doesn't really work on my pain and just leaves me feeling sort of drunk. So we had a talk about that before the exchange surgery. (A lot of people can take toredol and before my weight loss surgery (WLS) it worked great, but I can't use it following the WLS. The surgeon was saying that women don't have a lot of feeling in their breasts....well, I was in so much pain I was coming out of my skin...could have planned for that better...that is my only regret. And even the night I spent in the hospital for the mastectomy and expander surgery, when the pain was excruciating, I was still relieved on a level that was quite surprising. I expected some relief, but it was far more than I could have imagined or planned for.


    My family history was so strong i did not need brca testing to get insurance approval, which was nice..I don't really trust what insurance companies do with genetic testing, and since I lost so many relatives I already know, anyway, pretty much. Also I had more than ten lumps removed myself, and I couldn't go through another one emotionally....way too stressful. . The sense of relief I felt having my breasts gone MORE than made up for the pain, the surgery and the reconstruction process. I had expanders, but did not do any expansions, as I am pretty short and small framed. and done with the pain issue..I really don't care about the size of my breasts as much as I care about living...I am SO glad I did it....the expanders were uncomfortable. I actually had to drive the day after I got home from the hospital, cause one of my drains fell out and my ride and my back up ride flaked. I hurt really bad, but I did it. (avoided the freeway and took lots of breaks and no pain meds til I got home)..wound up having to go back every couple days to get fluid aspirated with a needle, which was a pain in the neck but not painful...the exchange surgery was easy breezy comparatively. I had a huge hematoma on one side after the exchange, but even then the pain was manageable, and really the peace of mind totally worth it. When it comes time to replace them, I will be close to retirement and probably skip it and use a prosthesis....I probably won't do the nipple reconstruction cause I don't like taking pain meds and am kind of sick of surgury and ready to start living my life. I didn't really realize how much of a burden was lifted off my mind once this surgery was done. I also had a hysterectomy (complete) in between the ex panders and the exchange surgery....it feels like i am getting my body back...not waiting around for bad news...it's really strange to outlive one's mother, aunts and grandparents, age wise....the sense of freedom I feel is something I am grateful for every day. Good luck with what you decide, and I wish you the best.

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  • Beans9699
    Beans9699 Member Posts: 12
    edited January 2014

    was it hard to breathe when you woke from first surgery?

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  • Beans9699
    Beans9699 Member Posts: 12
    edited January 2014

    Hello. I have gotten some great answers on this site. You are all wonderful. It helps to talk to other people going through this.

    I am a two time thyroid cancer survivor. I was 15 and 23 at diagnosis. I am now 42. My Grandmother passed of bc after being diagnosed at 40. She dies soon after. My mother's two sisters have had breast cancer, one quite aggressively and is at stage 4. My mom had her ovaries removed at 40 as part of a benign hysterectomy and is in good health today taking tamoxifen as a preventative. I had a ductal excision in sept which was benign although I did have a radial scar. I have very dense breasts and received radioiodine in large doses when i had the thyroid cancer. My father's side has thyroid and kidney cancer throughout and their is suspicion of something genetic there. After thinking and thinking I have opted for a PBMX. I just feel that I dont want these breasts and that the odds are against me. I am doing TE RECONSTRUCTION. 

    Am I selfish to dothis? Does it sound crazy to any of you? My ins approved it which is validation in and of itself. I just want to free myself of the worry, at least of the worry of bc. My friends and hubby support me so I am lucky! Can anyone out there give their perspective? My surgery is next week. Tx

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  • Jackiegray
    Jackiegray Member Posts: 69
    edited January 2014

    beans I am 42 as well. I am 2 days post op from a PBMX. I woke up from surgery like a huge terrible burden had been lifted off my shoulders. 

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  • Beans9699
    Beans9699 Member Posts: 12
    edited January 2014

    You are an angel! Tx! How do you feel?

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  • Jackiegray
    Jackiegray Member Posts: 69
    edited January 2014

    I'm not going to lie I'm pretty sore. It's the tissue expander a that are causing my discomfort. That being said each day is easier than the one before. What day is your surgery? 

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  • Beans9699
    Beans9699 Member Posts: 12
    edited January 2014

    1/13 is mine. Yeah I hear the tissue ex are awful. Can u breathe?? I am trying to prepare for the feeling I will have.....

    You did it!! Woot woot! I am cheering you on from NY!

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  • Jackiegray
    Jackiegray Member Posts: 69
    edited January 2014

    beans breathing is tight. Ask for a spirometer. It helps clear all the gunk from your lungs. I just got home. My bed never felt so good. I am ready to switch to Advil only for the pain I hate narcotics. Private message me any questions. I am an open book. I was blessed to have a private message buddy through my experience. She was an amazing source of comfort and information. Thanks for the cheers of joy! ((Hugs))

    Jackie

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  • sabihah
    sabihah Member Posts: 65
    edited January 2014

    These message boards are good, and you can also check out: http://www.facingourrisk.org That site (FORCE) has message boards where many women are considering, or have have already had, preventive mastectomies.  Some at FORCE have tested positive for a BRCA mutation, while others have a strong family history or personal risk factors.  Good luck - I know it's scary.

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