Who has opted for BMX?

I too am opting for a bilateral mastectomy. I had normal mammograms for years, even 2 days after I felt the ILC mass. I know that I will never be worry free but I don't want to face the constant fear I would have with the every 6 month monitoring of the other breast.

Count me in.  I opted BMX because I learned from this form that this BC is multifocal and sneaky, and my ILC was not shown up on mamogram.   My surgeon full supported me but my ONC thought it's too drastic.  But I guess, even we all have ILC, there is still a difference among each person.

I did. Mine was an incidental finding (3.8mm). I did not want to do this twice. I did a one step bilateral masectomy. Good luck- its so difficult. take care. Chocolate.

I was diagnosed almost 1 year ago. I asked my gyn what she would do and she said BMX with reconstruction. My surgeon said it was my only option with ILC. I was good with that because it was the only option I wanted. The TEs weren't fun but I wouldn't change my decision.It was kinda funny telling work I was going for a filling and then coming back bigger than when I left. Besides, now I have a new set of perky girls instead of one perky and one hanging. I ended up also having a hysterectomy in Dec. but kept 1 ovary. Now I don't have to worry about endometerial cancer while on Tamoxifen. I feel incredible and will be 1 year post BMX on June 8. Good luck.

BirdyRobin,

I had BMX with tissue expanders in Dec, scars are not bad at all am my Plastic surgeon is going to give me new ones when he does my exchange this summer, since they have stretched abit with the expansions.  Are you planning on reconstruction?  There is a picture forum. 

good luck and hugs to you.

Hi Deb,

I had "normal" mammos for a few years before ILC was found by me -at first thought to be quite small from ultrasound information, but after MRi was shown to be large enough for me to need a mastectomy. Once I knew I had to do one side, I decided to have the other done prophylactically. Nothing was found in the good breast, but I know that I am a worrier by nature, and would always be wondering what was going on in the left side. I have also become slightly phobic about tests and doctors, so the fewer visits the better. 

It's such a hard decision to make under stress-I guess my advice would be for you to ask yourself how comfortable you will be with future testing and monitoring.

I had reconstruction 1 yr after mastectomies and got pretty good symmetry.

All the best to you,

Cat 

Cath,

Thanks. A year after mx's you had recon. How did you deal with that year? Did you wear something in particular? Bra's, cami's..? How comfortable were they?

Thank you all for answering my questions. You all are so kind.

Robin

BirdyRobin,

I absolutely would do the BMX with reconstruction again, I just finished chemo yesterday, so glad to have this over with.  I am kickin breast cancer with all I have got.  I had lumpectomy in good breast 3 years ago (B9), and just knew I did not want to do that again.  Not looking back only forward!  Not sure how old you are, I am 47, planning many more great years, with my new perky boobs.

I made the decision to do a BMX after they found what turned out to be 20 tumors in my right breast.  Left side had two "pre-cancer" cysts.  BS recommendation was a MX on the right, Lumpectomy on the left.  I told him I loved him but didn't want to sit across from him again in 3 years and hear I needed a mx on the left.  He said he could support my decision.  Keep in mind no one believed it was in my lymph nodes when I went into surgery.  MRI's all appeared clear.  Turns out it was in 4/22 lymph nodes - a BMX was definitely the right choice....for me! 

I did get expanders put in right away.  A year later (4/19/11) I had my exchange surgery.  I did chemo and rads.  I will tell you that I am so grateful to have the expanders out but I can't really say I have perky boobs either.  Everyone keeps saying give it time, it's only been a couple weeks so I am being patient.

My advice for you is to  definitely ask a lot of questions and be sure you meet with a rad onc and plastic surgeon before you make your final decision.  Get a good feel for what your options are.

Good luck!

Hi all, I had a BMX without recon 9/2010. I haven't regretted my decision for even one second. I held off on recon so that it wouldn't delay my chemo and I didn't want to chance infection. My only recon option is DIEP so I was worried about freshly transplanted tissue trying to heal and then also, ruining that new tissue with rads. I had multifocal pleomorphic ILC.. the lump that I discovered was hazy on mammo but seen with ultrasound. Initially had lumpectomy in 7/2010. Then I transfered to ucla and when they did MRI, there was another "questionable" area near chest wall AND a couple "questionable" nodes. I immediately opted for BMX. Final path revealed 4 more tumors (only 1 of which was seen on MRI, 2 positive nodes (1 with extracapsular extension) and my other breast which was though to be clean had LCIS. My original lumpectomy tumor was 2.8cm and coincidentally, so was the tumor near my chest wall. All the others were under 1cm. My clean margin near chest wall was only 2mm. Had chemo, 38 rads and am on tamoxifen and currently getting zoladex injection. Just found out on Monday that I'm not metabolizing tamox, so thank GOD I insisted on zoladex 2 months ago because I started periods again right after chemo. Even though they put me on tamox during rads, I continued to have periods. I have to wait 6 months after rads for recon and I can't wait for my perky new boobs and tummy tuck, atleast I get a "boobie prize" for all my troubles LOL!! I will be adding a hyster/ooph to my surgery date. Obgyn will coordinate with my PS and do it all the same day. October can't come fast enough. Good luck to all of you on your journeys. I pray that everyone comes to the right decision for them. With that being said, ILC is a sneaky little b@tch and being only 37 when diagnosed and having 3 sons under 9, I wasn't about to mess around with this beast, she fights too dirty, haha! I just had a gut feeling that things weren't right and I went with that. Turns out I was unfortunately correct. Love, prayers and good juju to you all!! ~Xoxo~

Cat, thanks again for answering my question.

Jals thank you for telling us about your experiences. This seems like a very long process. I am not looking forwards to. Just one month ago I thought everything was going to be fine. I didn't know I was sick, didn't feel sick, just extra-tired, sometimes. But, as they say you can't go back to that kind of inocence after diagnosis.Thank you all for your comments, I know that all of you strong women have survived this and I will too. Your examples are inspiring.

Robin

My MRI showed multiple abnormalities in the left breast; one was lobular and one was DCIS.  I had previous calcifications/ADH biopsied on the opposite side.  My surgeon fully supported me either way, but seemed to indicate that I had made a good decision when I decided on BMX rather than unilateral.  Oddly, the right breast was totally clear on surgical pathology, but the left had an additional area of lobular dysplasia and multiple areas of ADH "sprinkled throughout the breast".  I am convinced that I made the right decision.

I knew I wanted reconstruction.  I imagined looking at myself with one "good" breast that I would always be worried about and one reconstructed breast.  Somehow it seemed less upsetting to have a matched reconstructed set.  For me, another reason to do both sides.

I strongly recommend that anyone thinking about mastectomy please at least inquire about nipple-sparing surgery.  Although my recovery has not gone smoothly I still believe that NSM has been a major factor in how well I've done mentally since my BXM.  I didn't cry when I saw myself after surgery.  I had slightly smaller (only partially filled tissue expanders) "breasts" with my skin and my nipples staring back at me in the mirror.  The mastectomy incisions were made below the breast so the breast "shells" looked just as they did before surgery.  NSM isn't done everywhere and not everyone is a candidate, but it is worth looking into!

BirdyRobin:  It's a tough journey, but I hope you'll find that once your plan is in place things will be a bit easier.  I found that to be true and I've read the same over and over on these threads.  

Hang in there!!!

BirdyRobin:  I feel for you.  The waiting is so hard - waiting for appointments, waiting for phone calls, waiting, waiting, waiting!  Yes, invasive lobular is very sneaky as it's sometimes difficult to find on imaging studies and often larger than initial tests indicate.  Good luck with your upcoming test(s).  I wish you all the best!

Bless you Sama,

Well, I had my brca test yesterday, and I talked to my bs about bi-mx. He seems to understand and support my decision, of course he gave me the low down on my options. Thursday ( I am starting to really dislike that day) I have an MRI assisted biopsy. I have read some info about those, but, they seem strange. How do they manage to use the needle inside the MRI unit? Any one beed through it before? Then again on Monday I have another bs apt. Monday. Tests Thursday results on Friday talk about it following Monday. Ugggg.

One new thing starting this week, I have a yoga class on Thursday. I am looking forward to that at least.

I am kind of cheeting on my diet tonight, I made lasagna. I have been pretty good ,I have cut out most red meat, but sometimes I still have it. LOL

Robin