single or double mastectomy?

Kathleen,

It might be a good idea to get another professional opinion, if for nothing else than your peace of mind.  Losing both breasts is a serious decision and the more information about such a choice can only be a good thing.

I am heading into my 5^th year as an ILC survivor.  I had a lumpectomy + rads and am doing fine.  According to the most recent stats, ILC does not appear to spread to the remaining breast more frequently than IDC....this report seems to be a continually inaccurate piece of information, based on incomplete studies done years ago.  I've had several MRI's of both breasts since my diagnosis and all test results are okay.

I had an SNB with 2 nodes removed and have always been hesitant about having blood draws and BP taken in my effected arm.  If both breasts w/lymph are removed, I've heard of tests being done on the leg.... calf part, instead of the arms.

Best wishes....so many of us have experienced your fears and are here today, years later to share our experience. 

HI Bean, just thought I would say I am in the same boat.  I have 2 ILC's in the left breast, one 4mm and one 9mm.  I am driving myself nuts trying to decide whether to do the bilateral or just unilateral.  The opinions in the chat rooms seem to be mixed, however there are a lot that end up being diagnosed in the other breast and wish they had done it all at once.  The nipple sensitivity thing is big to me too- if they leave one at least I will have that.  An interesting thing I heard from someone was that after she had both removed, "other parts" of her body became more sensitive and she actually enjoyed sex more.  Not sure if this is a rare occcurance!  I am meeting with a ps next week to discuss a DIEP flap- not sure if it is even an option for me but it sounds like the best procedure for me in theory. I think my doctors actually want me to be on hormone blockers even if I do choose to do the bilateral. I just had a biopsy in one node under my arm and it was negative.  I think the MRI showed it was ok too.  They said until they get in there during surgery and take a look at the nodes, they won't know for sure. 

It is funny, last saturday I told my husband absolutely I was only doing the single mastectomy because I felt very strongly about keeping my one good breast.  He said, "I agree, I think you are doing the right thing."Then last night I said, Honey, I have changed my mind, I am absolutely going to do the bilateral.  He said, "I agree and I think you are doing the right thing." I go back and forth so much I think he has learned to agree with whatever I say!!!

Good luck with your decision, let me know what you decide.

I agree that it is a difficult decision.  I had what they told me non-traveling type of cancer.  But, you never know.  My Surgeon was only going to do a single on my left breast, but my friend was there who is a radiation therapist for and she asked him about the left side and what if I wanted to get a bilateral.  He agreed to do the bilateral and said that it will reduce my chances of developing cancer on the other left side even more.  I was all for it.  I did not want to have to go through this again, or worry daily that I might have to go through it again.  My plastic surgeon also agreed with the bilateral.  It is better for reconstruction and because of the risk because of my age.  I was 35 when I was diagnosed a year ago.  

You will do what you feel comfortable with, and what is right for you.

Good luck in your decision.  It will work out.

Heather

I think you have to follow your gut....

You do need to be aware that removing a breast does not "guarantee" that you won't get bc in it.  Since they cannot get all the breast tissue, there is always a small chance of recurrence even with a mast.

I thought about removing both initially, but couldn't make that decision.  I fretted about it for about 6 months after my mast, wondering if I should have done both....and then I just got past it...and I am glad I only did one.

I did have a TRAM and reduction of the other side for symmetry.  The 'girls' match pretty darn good.

If this beast comes back, I figure I will either do a Lat Flap or an S-Gap or who knows what type of recon will be available. 

I just couldn't remove a healthy breast knowing that better detection methods and cures are coming out all the time.

HOWEVER...that was me and my decision.  YOU gotta do whatever 'feels' right to you.  Just make your decision and whatever it is...that is the 'right' decision....Regardless of what happens or doesn't happen later.

Good luck to you all!

since we are all giving our 2 cents, here is mine .

I opted for bilateral and no reconstruction.

I am a worrier and I do not like grey areas.  I know, I know, life is one big grey area --which is why I try to paint it black or white when I can.

I am the first (that we know of) in my family to get BC so I had no track record for survival/recurrence.  I did NOT want to have 6 month follow ups for life (6 mammo, 6 mri and MRI is the only thing that picked up my ILC).  I also did not want radiation.  With a mastectomy, I could avoid radiation, so in my case this was a no-brainer for me.

I was a 34D and I did not want to schlep around a prosthesis/form that would match THAT size!!

I also did not want reconstruction because I simply wanted to heal and get on with my life.  Even though my flat chest reminds me daily that I had breast cancer, I think having implants would have been, for me, more attention grabbing and a greater reminder.  If I had an implant to match the other breast, I shudder to think how much saline I'd be hauling around .

I was also lucky that I married a man who was not boob-crazy.  He frankly told me that being flatter made me look younger and less "matronly" as he put it ...

I had VERY sensitive, sexual nipples and I hugely miss them.  Do I regret my decision...nope.  Someone posted that they think lower libido and all of that comes with age, tamoxifen, other treatments and I wonder if that is the case.  If I had a chance to keep my boob(s), would they "work" like they did before?  Maybe not.  They say "sex is between the ears" and when I worry and dwell on having had cancer, nothing makes me want it....so being rid of a source of worry (at least as much as can be), may actually have been a better option for myself.

Best to you with your decisions.

I agree that you can always have reconstruction.  You can always opt to have a second surgery.  If you opt for unilateral and find you are doing well, great.  If not, you can always schedule the other to be removed.  For myself, I just wanted the whole ordeal DONE with.

p.s. when they removed the other breast, it was in fact, perfectly healthy, just as the MRI showed.  I still do not regret having it removed. 

Kathleen,

I wish I had made the decision for double mastectomies when I was first diagnosed.  I have a strong family history of bc, so it would have made sense.  I was later (12 yrs) diagnosed a second time, needed another mastectomy, chemo, radiation, thought I was finished with it (took Arimidex, Aromasin) but mets were diagnosed (liver and bone) almost 3 yrs later.  I'll always wonder if I could have prevented this by having bi-lateral mastectomies with the first dx.  I did have lymph nodes removed from both sides and now have the worry about lymphedema, although I've never had it.  I do use my arms for blood pressure readings and have blood drawn from my hand, was recently hospitalized, and they used both arms for BP and blood draws.  Made me crazy with worry, but still no problem has developed. 

I had no interest in reconstruction so can't help you there.  I wish you luck with your decision.  It's a tough one.

I'm a little late here - I interviewed two surgeons and they both suggested that I do a bilat.  Good thing too, as the pathology from the "good" side came back precancerous. I did expander recon and now have gel implants - not so sure if I had to do it over again if I would have done implants.  I am only 4 months out since my last surgery on the implants, so need to give it more time. Wishing you an easy surgery and easy recovery - but first peace with making your decision. all the best to you on the 13th.  Karen