Surgeon says right has to go

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hummingbirdlover
hummingbirdlover Member Posts: 421

I wasn't shocked to hear this.  It's simply because I have 3 masses (he thinks it's likely and hopefully multi-focal) and if he has to get clear margins on all three of them, I won't have anything left.  I had pretty much already made up my mind that if one was going, the other one might as well go too.  I have extremely dense breast tissue (which was news to me) and I just don't think I can deal with worrying about the other side for the rest of my life.  I know it's aggressive but seriously?  It feels like a no-brainer to me. I just thought it would be nice to hear from others who have made a similiar decision. 

Thank you

Comments

  • BooblessBritt
    BooblessBritt Member Posts: 13
    edited October 2014

    I have a triple-negative IDC in my right breast and I will be having a mastectomy with prophylactic mastectomy of the left breast. I'm also under the opinion that if one has to go, they're both going. At least this way when I have them re-built, they'll be all matchy-matchy and I won't have to worry too much about the what-ifs.

  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited October 2014

    BrittPro:

    "Matchy-matchy" just made me laugh out loud! Smile  I just wanted to wish you the very best on your surgery tomorrow!!  I'll be interested to hear how it goes. 

  • Theda
    Theda Member Posts: 42
    edited October 2014

    Hi Hummingbirdlover,

    I also decided to get rid of both, mostly because I wanted to have a matching pair. Righty had to go because of mutlifocal DCIS and after a lumpectomy and a cuadrantectomy with no clear margins, there was not much left o my little A cup. I had a double mastectomy with one step reconstruction May 29th. They did look good, even if I am having some troubles now, I don't regret it a bit. Hope it helps :)

  • BooblessBritt
    BooblessBritt Member Posts: 13
    edited October 2014

    I just saw your reply on my introduction thread! Thanks for the well wishes. I'm so glad I found this board and I'm glad you liked the matchy-matchy  I'm sure I'll be back on here not too long after my surgery - if I can get a few seconds between my husband and my mom, lol. I'll keep you updated.

  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Hi Britt!

    I live in Virginis Beach.  Small world.

    I had BMX with immediate implants on 8/27.  Cancer was only in the right, but I didn't want to have to worry about the left forever so  - Off with them both!  I don't regret the decision one bit.

    Good luck with surgery and let us know how you are doing.

  • inks
    inks Member Posts: 746
    edited October 2014

    I had multifocal tumors as well so we knew that right had to go, but the decision to do bilateral mastectomy came after positive genetic testing. I never thought that I would miss my breasts but I'm 1 year from initial surgery and I am starting to miss them just now since all the hustle and bustle of treatment has worn down. Also just a heads up that multifocal/multicentric tumors are tricky to stage. I was staged IIb by one center and IIIa by another. They will measure the healthy tissue between the tumors and that will decide if they consider all tumors together or go by the largest one. And I was surprised that the first place did not change their staging even though the second place notified them about the discrepancy in staging.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    I had a right mastectomy only.  I'd already decided on mastectomy when they later found a 2nd tumor so I felt even better about the decision.  I didn't feel I was a good candidate for reconstruction because if I don't have nipple and sensation - I didn't see any reason to have it. But no one even told me that would be the case because I'd already decided against it because I worried that I'd be too concerned about future mammograms and cancer "hiding" behind the implant, etc.

    I later wished I'd had both taken off, if for no other reason than living "lopsided" is a pain in the arse.  I even talked to a breast surgeon about it at one point, but then teared up in the exam room thinking about losing my only breast with any feeling left. This was also the first time I realized they would never be terribly equal if I did reconstruction. The other side would have to be lifted (more than once, over time); I might need to replace implants ( I never considered the other reconstruction options - too scary to me), if I gained or lost weight would one change more than the other?

    So my "lefty" remains, always in the way, and may still come off someday. I also think I'd feel better about looking at myself in the mirror with no breasts than with one. It took awhile to get used to seeing myself with one, and no one else has EVER seen it (well, except doctors of course).  I have not been in an intimate relationship since my diagnosis. So much for saving the existing breast, eh?

    With prostheses, it's nearly impossible to lean forward with anything lower than a collar that is at least as high as a T-shirt collar. That doesn't seem like a big deal.  Let me assure you, it IS.  I have ZERO cleavage on the mastectomy side.  I don't wear ANY type of "low cut" tops. It's the NORMAL tops that are the problem.  Even wearing an undershirt is not adequate. It's hard to explain but it's truly always a problem. My swim suit comes up to my neck. True story.

    So - I tell you this to say that you should not feel that removing both breasts is overkill.  Whether you wear prostheses, get reconstruction, or go flat - at least you'll have a "matching pair" and that will be much easier to deal with. So, listen to your docs, and research others' experience, but go for what YOU think is best, and don't look back.  I've NEVER regretted removing the cancerous breast.   

    Best to ya.

  • Lily55
    Lily55 Member Posts: 3,534
    edited October 2014

    i hate being lopsided, feel like a freak still over two years on 

  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited October 2014

    Thanks for the support and to Lily55 and whatnow, wow, I admire your courage and honesty.  Those types of "lopsided" things hadn't really even crossed my mind and now that it has, it has helped to reinforce my decision.  It's hard to think of losing something so "personal" but to me it's something personal that is trying to kill me so I just want it gone.  I'm sure there are emotional scars we'll all have to bear but I can handle that if it means I'm here to bear them.

    inks - your post scared me and now it makes a little more sense what the doctor was telling me about the space in between and the measurement thing.  Something about if it's bigger than 5 cm overall or something - maybe that meant chemo and/or radiation?  I can't really remember what he said.  I hope they are not touching each other and that they truly are 3 independant areas.

    This is all SO overwhelming!

    My best to all of you brave ladies!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    inks:  Interesting.  I had two tumors.  Is that different than "multi-focal"?  They told me the second one didn't enter into my staging, and that it was done solely through my larger tumor (which was 1.8 cm; fortunately keeping me at stage I). I have no idea how close mine were. Since they never told me anything about them, I don't know if it was multi-focal or multi-centric.

    ok, so, nevermind.  I looked at my report and it says there were two primaries, so that's probably multi-centric, I'd guess. Anyway, they only measured and staged according to the larger one.  And that also doesn't sound like your multi-focal situation. So I guess that is irrelevant to your post, but I didn't want to just "delete" my post - that always looks strange.

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    We're thinking about you!

  • dltnhm
    dltnhm Member Posts: 873
    edited October 2014

    hummingbirdlover, 

    I opted for a left skin sparing, nipple sparing mastectomy with DIEP flap reconstruction. It was all done in the same surgery. Nothing was done to my right breast. 

    I just want you to know that it is not always necessary to remove both breasts to achieve symmetry. And additional surgeries down the road are not always necessary to maintain symmetry. 

    Often times you will read personal accounts with challenges and negative results. There is a place for sharing our stories - it's just important to read the positive stories also. Anecdotal  'evidence' is truly not evidence. It's experience. 

    Hugs dear one! 

  • inks
    inks Member Posts: 746
    edited October 2014

    whatnow - multifocal is 2 or more tumors in the same quadrant of the breast, multicentric is tumors in different quadrants or sometimes they go by 5cm or more apart. One is better than the other but I do not remember which one or why. So the staging situation when they will measure two or more tumors as one goes for multifocal. I had both - lucky me. In your case the pathologist was able to tell you that you had two primaries but in most multifocal and multicentric situations the question that goes unanswered is how did those multiple lesions happen. It could have risen from two different areas of DCIS, from the same area of DCIS or seeding.

  • granny72
    granny72 Member Posts: 29
    edited October 2014

    I was multi-focal - one at 1 o'clock and 1 at 2 o'clock.  One was 1.3 cm and one was 8mm.  Surgeon told me he could do a lumpectomy, but there would be very little breast left.  I opted for a bmx as I did not want the worry about the other breast especially since it was the one that always hurt.  I did not do any reconstruction.  I was shocked at what I saw - I have a scar from under the right arm all the way across my chest to the middle of my left underarm.  I look like I have a row of donut peaches across my chest.  I really could not look at it for weeks without crying. I am so sorry you have to go through this.

  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited October 2014

    I had a left mx - and I had two tumours, but one was IDC and one was ILC. I did ask to have both off - mainly because I didn't want to worry about it coming back in the other breast. My bs talked me out of it.

    I never considered reconstruction. Didn't want the extra surgeries and all the pain and inconvenience they would bring.

    I'm four years out now, and can say that I don't mind being lopsided at all. It was hard to begin with, but I'm used to it now. I wear a foob (prosthesis) when I go out, but at home I go bra-less. I don't love the foob, and can't wait to get it off when I do get home.

    On the whole though, I'm quite happy being lopsided. Well as happy as you can be in this sort of situation lol.

    Good luck to you, I'm sure you'll make the right decision for you.

  • Ridley
    Ridley Member Posts: 634
    edited October 2014

    I had multi focal - 8 little suckers in the same quadrant.  Mostly IDC,  but a few iILC in the mix.  All low grade.  I also had a spot of DCIS in the other side, so I decided both would go.  Had diep recon last December and a revision yesterday.  Will have one more surgery to reconstruct nips and then tattoos, and then, hopefully I am done.

    I have no regrets,  I could have done a lumpectomy on the side with the DCIS, but I found all of the imaging very stressful and didn't want to be going through that every six months (I was told they would be watching me like a hawk).   Plus, you can only do diep recon using tummy fat once, and I'm young now with no co-morbitities and a good support system in place.  All of those factors also contributed to my decision to do both.

    Good luck with your decision - it's a tough one, but whatever you decide will be right for you.

    Ridley

  • SmartassSmurf
    SmartassSmurf Member Posts: 157
    edited October 2014

    Do your research, ask your docs, ask here & then do what is right for you in your situation. 

    I did not have multiple tumors, but had a lot of wonky stuff going on besides my IDC. I tried a lumpectomy, which they were unable to get clear margins from, and seriously considered a second lumpectomy. Turned out what was right for me was BMX. I have no regrets, and my docs agree it made sense with what I had going on in both breasts.

    I am 42 years old. I am not sure if I will have reconstruction. I do not wear prosthetic bras...or any bras. I might change my mind.

    Regardless of what people tell you, make your own choose based on what is right for you & don't look back.

    You deserve what you need to get past this insane part of your life. Good luck.

  • Sassa
    Sassa Member Posts: 1,588
    edited October 2014

    I had a modified radical mastectomy of the right breast.  I was huge breasted and wanted the left one off at the same time.  The surgeon said he couldn't as the left breast was "healthy."

    This left me grossly asymmetrical and in pain from my neck, shoulder and back muscles trying to deal the imbalance on my chest.

    When I had my chance, I had the left breast removed in a simple mastectomy.  I was thrilled and went flat for over two years.

    SmartAssSmurf, take your time about reconstruction.  I eventually decided I wanted to do it.  I had the time to research the different reconstruction methods and find my plastic surgeon (I consulted with four before deciding).  

    By the time I did the reconstruction, I was fully healed from the mastectomies and had regained strength and flexibility in the various upper body muscles.  I sailed through my choice of tissue expanders and silicone implants.

    I haven't regretted any of my decision: bilateral mastectomies, going flat for over two years and reconstruction.  I tell people that as far as I am concerned, my new set is far superior the original equipment and I never have to wear a bra.

  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited October 2014


    Hummingbirdlover. Since the BC I have met so many women that have undergone double mastectomies. I learned this much. All those that had reconstruction later faired well. The results were good. They can easily wear swimsuit and/or some cleavage and look/feel good about it. The ladies I met that had reconstruction immediately following surgery did not have the results they had hoped for.

    I wish you all the good possible.

    Gentle hug

     

  • SmartassSmurf
    SmartassSmurf Member Posts: 157
    edited October 2014


    Sassa - thanks for the support on the delayed reconstruction. I probably will go for it at some point...I am a little nervous because after radiation, I will probably have to do some sort of flap (maybe dorsi?). But  like the idea of not having to wear a bra. Right now I am not wearing one (nothing to put in it) and it is so comfortable!

    My only flat girl complaints have to do with being unable to wear a lot of my previous work tops. They are either too low now that I do not have boobs, fall forward when I lean over, or the tailored things look odd because they slide up without my boobs to hold them in place. Frustrating. I probably need to go shopping.

  • Kalonis52
    Kalonis52 Member Posts: 134
    edited October 2014

    Yes, I agree with you having them take both out. I only had IDC in my left breast. They took that, and, I kept my right. And, I had a Diep Flap Reconstruction done. I am ruined. I am all scarred up now. I totally regret not having them both taken out. Have them take both. Be done with it. You,then can have the reconstruction done later.

    Kaloni ThumbsUp

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