Prophylactic mastectomy? I don't know what to do...

Eli, I was completely TERRIFIED to have a masectomy, and prepared myself emmotionally for the worst.  It was much easier than I had anticipated.  I think it depends on each individual, but its not a joint, or an internal organ surgery like I have had in the past, so as far as surgeries go, my mx was a breeze compared to others that I have had.  I do think the mx is more emmotional than it is physical.

I am so sorry for your dilema, as we have all been in this "what to do dilema" since diagnosis on bc.org. I have learned a lot since joining this site in Nov, and everybody is so helpful and compasionate here.  I hope this has helped you.  

I wanted a bi-mx when diagnosed in October, but doc said to wait until they knew for sure what they were dealing with, and just did the left mx, and put in an infusaport, because of he size of the tumor.  Well after it was all said and done, my onco score came back at a 22, and I do not have to do rads or chemo, and the stage and grade both were changed to a grade 1 stage 1A.  Now I cannot get scheduled for the bi-mx until next year because everybody had thought the worst.  I am thankful for their mistake!  

Hi Eli

I'm sorry to hear about your lymphoma and the treatment you've been through. I've had mastectomies and can speak to that experience and am currently undergoing tissue expanders with a planned date in January for exchange to implants. The whole experience is doable but I certainly wouldn't recommend it to anyone unless they were diagnosed with BC or at high risk of BC. Feel free to ask questions here or PM me. Good luck.

I think you should definately get a second opinion and not let anywone sway you towards a decision specially if there are no issues with your breast now, and absence of family history or genetic testing.

I have to tell you, mastectomy is not a piece of cake, for me it wasn't in any case. I have went through a  couple of surgeries as well and major abdominal surgery and even thought maybe in physical terms it's easier, it's not emotioally. Especially when it comes to reconstruction. Depending how wide your natural breast is, that's the margins your breast surgeon has to take out and in my case, it was more to the side and deep into my armpit.

Take someone like me. 27 years old, healthy, purely prophylactic bilateral mastectomy and did it because I did not want my small kids to go though what I exerienced with the loss of my mother to cancer. Add family hstory, own breast issues and BRCA1+ .. I figured I am young and will have more options with healthy breast andhoping for easier recovery on my body.

Healthy and after immidiate reconstruction and not so good outcome with  the fact that now my nipple is possibly dying off I am now faced with the fact that I might have to go through 3 more surgeries in the next year (take out impants, put in expanders and then put implants back and do nipple graft) = there you have it. I am not trying to scare you but I beleive women should really know that it's not always the easy road that some doctors paint.You have to be prepapred to deal with your decision while understanding that things might not work out as planned.

Best wishes.

I decided to have prophylactic mastectomies after my diagnosis. I was tired of living with the worry. My surgeon agreed with my decision and I have been very happy with the whole process. For me the surgery was not bad. Hospital for one night, pain pills for three days and then just taking it really easy for a month. Good luck with your decisions.



Hugs, valerie

I just had a single masectomy.  Like you, I've got 2 small kids (6 mths and 3 yo).  The pain/surgery wasn't bad.  But if I had been doing a prophylactic, I would have waited.  I'm not suppose to pick up my kids for 6 weeks.  That is tough for me and my husband.

Best of luck with your decision.

My daughter and I were researching about this recently as a close family member was facing this choice as well! I found the article on the front page of www.breastcanceranswers.com which had some great information (last I checked it was the latest article so it should be on the front page!) There was also a PDF to download and print to take to your doctors appointment as well Goodluck and I hope you find all the answers and information you are looking for to make the best choice for you! 

I was faced with a Prophylactic Bilateral Mastectomy due to me being BRCA1.  I decided to change my diet and lifestyle drastically instead and now feel healthier (and look healthier) than i've ever been in my life.

I spent 3 weeks at a health institute and have done a tonne of research about food and cancer (but you also need to do a lot of other things) and I can honestly say, I am so happy with my decision. 

It took me months to decide and a lot of ups and downs but I am glad I have decided to do it this way.  I believe a lot of cancer's can be prevented through diet and lifestyle changes (even if its genetic as the expression of a gene can be changed and does change).

Its a personal choice but when there is no cancer there, maybe its good to look at prevention from other changes in your life??  Just a thought.

The important thing is that we are all dealing with our risks, instead of adopting a head-in-sand attitude. How we choose to manage the risk is so very individual; what's scary for me might not be scary for someone else, and vice versa.

I needed to just have the prophy bmx and be done with it, but I sure do admire Sandals' decision to take another path--one that would have more uncertainty than I would want to take on, but that's just me. Bravo to you Sandals, for taking a own head-on prevention approach, and I'm sure that you are also being super vigilant on monitoring your continued risks.

Turnberry, bravo to you, too, for making a decision that as you say, is your own choice to meet your own needs. I am 100% at peace with my own decision (six months later) and came out of it healthier and stronger than I was before, as deciding to do the prophy bmx also propelled me to re-commit to fitness and nutrition--hedging my bets for faster, better healing from the bmx and recon surgery.

Many pathways through the forest here, and I really do benefit from hearing the stories of other women in the forest.  Best wishes to everyone who is following this thread because they are facing a big decision.

Carol

NO bra needed with expanders, they're rock hard. Never wore one until my exchange surgery 12 weeks after the initial surgery to shape the implants better. I began wearing a sports bra 2 weeks post op and at about 6-8 weeks i switched to an underwire for more improved shaping of the implants. It takes 3 months for final results. My NSM outcome is amazing with hidden incisions. Lots of choices and decisions indeed. Good luck!

I had a BMX in June '10.  The left was prophylactic.  I didn't want to have the constant worry every six months to have the left one checked.

I was in the hospital for four days.  The first night was the worst.  They couldn't get my pain under control.  Not gonna lie, it was hell.  I had a lot of pain for about two weeks.  I went home with four drains.  The two left drains came out a week after surgery.  I had the other two for about three weeks total.  My doctor is very conservative.  He wanted my output less than 20ccs in a 24 hour period.  Some drs will take it out when you are 60ccs or less.

Sleeping was awful for the first few weeks at least while I had the drains in.  I'm not a back sleeper.  I slept elevated for about the first couple weeks.  After that I was stuffed on the sides with pillows.

I developed a bad infection in my check a month after and had to have my right TE removed.  That was a bummer but that surgery was easy peasy and so was that recovery!

Some women experience pain or discomfort with their TEs, I haven't really.  Not enought o be impacted by it.  You know they are there for sure.  but my dr is really slow on fills.  I only get them done once a month at about 60ccs.  Some drs do them every week.  I'm glad my dr doesn't do that and is probably why I haven't experienced what others have.

jocelyn - I was very active also.  I started working out with personal trainer a month after but then had the set back of the infection.  I wasn't allowed to move my arms for three weeks after surgery.  After that my trainer worked with me doing intensive stretching exercises.  He incorporated some yoga moves into my routine. The first two weeks was to get my range of motion back, strictly stretching.  It was hard but if you are in good shape now it shouldn't be too bad.  I went back to full on workouts two weeks after my TE was removed.  I was lifting 15lb kettle bells, not nearly what I used to do and doing pushups.  Walking is great!  You need aerobic exercise but go at the pace your body will allow.

I had my TE replacement surgery two months ago and can now sleep on my sides again and somewhat on my tummy...with pillows!

It's a difficult surgery but like others have said EVERYONE is different!  Prepare for the worst and expect the best.  You'll most likely fall somewhere in-between.  If you have a goog support network, you will be fine.

Jocelyn - If you would like to pm me, I can tell you what I did to prepare for post surgery around my house.

Michelle :-)

I was diagnosed with cancer in my left breast.  After two failed attempts at lumpectomy it was necessary to remove it.  The surgeon recommended both and I agreed. (they were sagging anyway LOL)

My other reason - besides sagging - was that I had heard from and read about too many women who had one breast removed or lumpectomy on one breast and then had recurrence in the other breast.  My mail lady had this happen and had to go through chemo twice.  I decided it was not worth the risk.  When they took the "good" breast they found it had a papiloma which is, or can be, a precurser to cancer, so I may have saved myself some serious grief.

I had the mastectomy on September 15, 2011.  I did not choose reconstruction because I wanted to get through it quickly and on to chemo.  I spent one night in the hospital.  I did not have much pain.  Took Vicodin for a couple of days.  The night in the hospital was necessary - for me at least - because the anesthesia flattened me.  The next morning I was fine and went home.

I suspect that when you also do immediate recon it requires a longer hospital stay due to the additional surgery for implants or flap procedures.

I had a drain for each breast which were there for two weeks.  I had to sleep on my back.  After I had the drains out I could sleep on my side.  It gradually got better and now there is no problem at all.  My breast remnants are still healing and getting smoother - surgeon said it takes six months.  I am fine with a flat chest and just pop in a couple of fakes if I go out.

My reason for not doing immediate recon was because I had found out on this website that there is a recon using your own fat that appealed ot me and can be done later - years later even.  It's called fat grafting and is done by taking fat from a part of your body where you don't want it - lipo - and making breasts with it.  The appeal was that I would not have to undergo larger surgery again. The lipo is done under anesthesia but with very little down time and quick recovery and you wind up with warm natural breasts.  I have read posts from women who have completed this that you also get sensation back in your breasts.

Kathy

I know this is long but I wanted to post my experience, now that I'm 6-weeks out from my prophylactic bilateral mastectomy. I searched frantically on this site beforehand to know what to expect, so hopefully this can help someone.

I decided to because I am BRCA2+ with a strong family history, and my sister just passed away at the age of 30 from breast cancer. My breast surgeon recommended a nipple sparing surgery and I opted for immediate reconstruction with tissue expanders. I wanted a quick recovery from the initial surgery but didn't mind if it took awhile to get my new perfect (hopefully!) breasts. 

My surgery was Feb 16th. I had 1 overnight in the hospital. They put 2 drains at each breast and also took cell samples from my breasts, nipples, and lymphnodes during surgery. The incisions were on each side under the breast. When I woke up, one side was very bruised and hurt (well everything hurt). I'm not sure what happened there, but my breast surgeon explained it may be that many blood vessels serve the nipple and it is impossible to tell which is the dominant one, and in some large breasted women the blood supply is not easily determined, so one of them could have been affected. Another thing I wasn't aware of in the hospital is that they gave me a catheter (although I was out and didn't feel it), and post-surgery you have to pee within a certain time frame or they will RE-catheter you! I drank a lot of water after that. Another big milestone is being able to eat without getting naeuseous, which was another hurdle. I was also surprised by my lack of breathing capacity when I woke up, it felt like a lot of pressure on my chest. I worked on my breathing as much as possible in the hospital. That tightness and shortness of breath didn't go away until about a week. 

 When I got home, I found a comfy spot, which was difficult. I only just started sleeping on my side again, so I got real used to sleeping on my back with lots of pillows. I was able to stop taking the pain meds after about a week, weaning myself off them during the day and only taking them at night. They made me nauseous so I tried to switch to Advil as soon as possible. I had to wear my boyfriend's button down shirts for a long time, maybe for 2 weeks. Putting on "real clothes" was a big deal for me. Even 6 weeks out I am mostly wearing cardigans, tank tops, and things that I don't have to put over my head.  The mastectomy tank I got from my doctor was great, it had little pouches for my drains, but I felt like it was too much pressure to sleep in. I had my drains for 2 weeks. I was so happy to have them out.

My Mom was here for 2 weeks to do everything from wash my hair, drains, cooking, cleaning. Every day that I could do something new (dress myself, comb my hair, shave my armpits, etc) was a small victory and helped me measure my progress. I would go for walks every day after I got home. Before surgery I was fairly active, I love running and yoga, so I wanted to maintain some strength. 

 The side with the bruising ended up scabbing over and it was a distinct possibility that I would lose my nipple. Necrosis is an expected side effect, but I was very frustrated that after all this, I might lose one. I had to keep reminding myself I wasn't sick, and that's what's important. My pathology report came back clean! Just the other day (6 weeks out), the scab fell off and I think there's a nipple under there, I'm just waiting for the rest of the skin to heal. It was very encouraging to read this elsewhere, because once it scabbed over I thought it was a goner. 

After the drains were gone, I returned to work the next Monday. I was off the radar for only 1 week, was working from home after that, and back to the office after 1.5 weeks. I would wake up with a sore back a lot, mostly because my chest muscles need to expand, but once I'm up and moving around it goes away. The expander fills I get are about 60cc each week. For 1-2 days afterwards I feel sore, but it gets better each time. Because my incision was under the breasts, when I got home the skin under the nipple was folded over, kind of delfated, but gradually after the fills the fold is unfolding. I don't have much or any feeling in my breasts, but the pressure does feel a little weird. For the first week I don't think I touched my breasts at all, but once I started washing them in the shower I think the sensation of touching them myself is helping me get used to them. 

Six weeks out I feel mostly normal, although my range of motion is not completely back. I am cleared to run again, and thankfully my yoga instructor knows about my surgery and helps me stretch out my arms and chest. I am so happy I did this. I will admit at some points during recovery I would think "Why did I do this?" but it gets better, it all passes, and the benefits far outweigh the pain. I'm looking forward to the next step, getting my "real" fake implants in replacement of the tissue expanders. 

For anyone interested in learning how to avoid lymphedema, here's a link in the LE forum:

http://www.breastcancer.org/tips/lymphedema/avoid.jsp

And here's a discussion thread where I posted info about safe exercising after node removal:

http://community.breastcancer.org/forum/64/topic/784378?page=1#idx_7 

Jocelyn, a lot of LE patients find that the breast surgeons downplay or just don't see LE risk until swelling is undeniable, and even then they tend to call it postsurgical edema way too long. Stepup-speakout.org has a wonderful printable document meant to be given to physicians who are doubting LE is developing. It was written by an MD who has LE. I am writing this on my phone, or I would insert a link, but I think you can find the resource.



My own BS really pooh poohed the LE risk. I can get you some good studies if you find you need to help your BS with current risk incidence info.



Carol