prophaylactic mastectomy, or not?

lightandwind

I have a decision to make and I can't seem to settle on what I want to do. I had a L. Mx and oorph. in may this year, 5 cm, stage III, ER+PR+ HER2-, grade III tumor, 5/21 nodes. I am considering doing implant recon in November, and have been having an internal debate about whether or not to have the r. breast removed at the same time w/ immediate recon to both sides. The breast has a large 3-5 cm fibroadenoma and several small cyst, but no cancer on PET. Here are the questions I'm trying to find answers to in order to decide, If the breast stays would the breast tissue or benign conditions give off more estrogen and aromotase causing a higher risk for systemic or distant recurrance. If the breast stays is it likely to develop cancer because I have had it in the other breast. If circulating cells from previous primary tumor on L. are trying to metastisize, is it more likely that the mets would go to the R. breast over the liver. bones, lung,ets. Would I decrease my risk of further disease by R. breast removal? I'd like to know your thoughts and experiences about this. Thanks!

MissC

Hi there, how are things going? I only just noticed your post and curious as to what you had decided? I too am Stage II / ER+PR+ HER2-, grade III tumor, 1/21 nodes  positive. I initially had a lumpectomy and nodes removed. Once determined it had spread I opted for the bilateral..FOR ME it was the only decision. Mentally I could not continue to ponder the very same questions you have posed here..I would never have been able to look down at myself and wonder whether the cancer had moved to the left breast. I am now 7 weeks post surgery and am beginning dose 2 of TC regine of chemo on Tuesday. I feel I have done ALL I can do to improve my chances of migration and / or reoccurance being eliminated. Perhaps a radical choice but this is no time to be reserved. I am aware that this will not improve my chances of this monster stirring any where else in my system but I do know that I will not have to worry about breast cancer again...

Best of luck with your choice and treatment and please let me know how you are doing

Momine

Is your cancer ductal or lobular? Lobular is more likely to recur in the other breast.  My cancer being lobular was added reason why I chose to get rid of the whole rack while I was at it. Like you I had cysts and fibroids in the "good" breast. The explanation from the docs of what the follow-up would be like was another reason I chose BMX. 

It really depends on your personality, though. I knew that keeping the breast would just end up being an endless source of worry and misery for me. But that is me. Others see it differently obviously. For whatever it is worth, I am a year out from surgery, have not had recon and I have no regrets. It also turned out that in spite of clean scans etc, there was stage 0 in that breast, so good riddance.

HLB

Hi, since my cancer was not found by mammo I would have had to be followed by MRI on the other breast. Also I had suspicious areas and had bx of the good breast at which time I had just found out my lx did not have good margins and needed mx, so I was so upset, terrified, and drained, I decided that whatever those good breat bx showed, I was getting them both off! It also made reconsruction better and easier to make even so I really didn't see any down side to it at all. (I made a list of pro and con). The only con on the list was no sensation and I really didn't find that important. As for the chance of mets, I'm not sure about this but I have never heard of mets going to the other breast. I think most likely if that breast got cancer it would be a new primary.

kathleen1966

I opted to keep the right breast.Although I was never given the option and I'm not sure my insurance would cover removing a breast that doesn't have cancer.  Now that the left breast has been gone I am ok with this decision.  Numbness on one side is enough.  At least I feel normal on the other side. I also worry about the possibility of lymphedema in the other arm and I already have it on the mastectomy side.  I wonder if this only happens if lymph nodes are removed but I'm worried any alteration could cause this?  I have not had reconstruction on the left side yet.  Still debating whether or not I want to have another major surgery. I have been doing well and I don't want to mess with this. I will admit it, I am afraid. I do worry about this breast as the other breast had soo much cancer...how did the right one escape soo easily....I had mastitis years ago on one of my breasts when I was nursing but I can't remember which one! 

KerryMac

I am nearly 4 years our from dx, and this is something I still think about! I had a uni-mx with no recon. It is all they would do after dx, as they wanted me healed asap to start chemo. Sometimes I think having the 'good' side removed would be less worry, would eliminate the need for a mammo, etc.

I have had many discussions with my BS about this, and she has said that they would removed it if I wanted, but medically speaking, the biggest worry is the cancer I already had. So basically the risk of mets is more of a worry than the risk of a new cancer. I had IDC, which doesn't 'jump' breasts.

And, so far, I have not opted for the extra surgery, which of course comes with its own risks as well. However if I was having recon, and having more surgery anyway, i probaby would be more inclined to go for the second Mx.

lago

You might want to read this information on the NCI's site: linky 
I did the double but had 3 of the factors listed and was recommended by BS.

krcll

I didn't have recon, so I can't address that part of it. My onc said that cancer in the other breast is not what they worry about, they worry about the cancer spreading. Like Kerry, I used to think about removing it anyway, but the slightly higher risk of LE if I had more surgery was the clincher. It would be different if I had lobular cancer.

MissC

Hi - it was ductal - but for me I simply diid not care! Wanted them gone..the medical pros / cons are so varied but again FOR ME it was a mental game. If they were taking one then why not the other..couldnt bare having to be there again. Whether they would of ever happened is up for debate but in my head it lessened the worry. To be honest, having both gone is not an issue for me - at the moment its liberating not to wear bras Maybe in a few years it will be something I need to ponder again but now I am happy with my decision. My breasts got me thru my modest days and fed my 3 gorgeous children. However, now at 47 it simply is not an issue.

Everyone clearly has their reasons...being a single mom with 3 very young children made the decision very easy. If there was a 1 point advantage of taking the other then it was to be done...

Best of luck everyone!!! Empowerment is key...

Ihopeg

Hi! I feel exactly the same way. I have recently lost weight everywhere except my remaining breast. Its just in the way. I am considering getting it removed , but the only worry I have is the reconstruction. I have seen so many horror stories on here. Its been almost 6 years, I am not sure if the recon will be covered by insurance. Anyway, i am really sure I want it off. I'm tired of worrying the ILC will come back in other breast!

lago

ihopeq remember that most people post when they have issue not when things are going great. I had the double and did implants. (I had no tummy or back so I really didn't have to many other options unless I wanted to do micro surgery). I'm happy with my implants but I didn't do radiation. I do hear the longer you wait if you had rads the better. I would discuss this with 2 PS and see how they feel about your skin. Insurance should cover the reconstruction. Not sure about removing the other breast though.

lightandwind

Hi Everyone, Thanks for your replies. This is helping.Keep it coming. You're experiences tell me a lot. You're satisfaction w/ your choices speaks volumes too. Going to start my list of pros and cons. Mine is IDC. I was so afraid of my dx at first, i was all ready to give up after my mx and oorph. Getting the ovaries removed really put me in a deep depression, but now that I'm coming out of it, I would like to make the most of the rest of my life and do what I can to extend it too, so considering these choices. Thanks all! Peace, love, and a long fulfilling life to all of you!