single or double mastectomy??

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honu
honu Member Posts: 3
edited June 2014 in Stage I Breast Cancer

Hello to all you awesome women out there.  I've been scanning the boards for a couple of weeks but this is my first post.  Any feedback or perspective warmly welcomed.

Last month--at 41 yo--I was diagnosed with IDC (stage 2 tumor, no clinical evidence of node involvement, ER+/PR+, HER2-) and given the option of lumpectomy + six weeks radiation OR a mastectomy (is MX correct abbreviation?) or double mastectomy (BMX?).  I decided on the lumpectomy, because I was really keen on retaining nipple sensation.  That said, during a follow-up appointment with my surgeon, new information was revealed that changed my mind.  An MRI measured my tumor at 2.5 cm vs. the 1.3 cm measured by ultrasound, and given my breast size--a small 34B--the surgeon raised concerns about cosmetics, particularly with additional tissue to be removed.  I explored cosmetic options with a plastic surgeon--different size implants on both sides, fat grafting, etc.--and also researched short- and long-term effects of radiation.  Ultimately the same resulted in scheduling a mastectomy for 4/20, reasoning that I could forego radiation and nearly obliterate the chance of recurrence, while also achieving a positive cosmetic result.  For a few days I felt really good about my decision.  But...

I'm back to considering/ruminating.  Now that I've gotten comfortable with a mastectomy vs. lumpectomy, I'm wondering if I should go ahead and do a bilateral.  I like the idea of nearly obliterating the possibility of both recurrence AND a new cancer in my currently healthy breast (though I realize there's always a possibility).  As I think about my life in the decades to come, I wonder if it might feel qualitatively different for my family and me--more peaceful/less anxious?  I don't know.  At the same time, I don't want to take pleasure away from myself unnecessarily.  I rather like my breasts, sexually included, and so I think--why give sensation up, virtually in total?

My surgeon--with a bias against prophylactic bilaterals, I think--tells me there's been a 300% increase in elective bilaterals in the last 15 nears.  One could argue that's a staggering figure, but when taking into account genetic research, and the cultural shift toward giving women more decision-making power, I guess it makes sense to me.

I feel a bit in a vacuum, and wish I understood more about any patterns of decision-making with women in similar circumstances.  What are women typically choosing?  I don't know.

Any reflections or advice?  I send gratitude... 

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  • starbeauty
    starbeauty Member Posts: 327
    edited April 2011

    Hugs to you Honu... I'm sorry you are in this club...

     I think some of my stats are similar to yours... when I was deciding there was no indication of node involvement either... and everything pointed to being able to avoid the MX.  I thought about the size of my tumor on US and MRI - and decided I didn't want to mess around with it... I just had a unimx.  When I woke up... I had node involvement... when I got back the pathology results I had a tiny strand of cancer going all the way to the edge of the breast... so I ended up with chemo, rads, and tamox.  My reasons for the unimx were to protect the "me" of me... survive - I kept the other breast because my breasts were beautiful - and one of the things I liked about myself.  I couldn't reconstruct without doing a flap... and I didn't want a flap from somewhere else to make something that doesn't look like what is still there on the other side. I felt really insecure about my "chances" and I didn't want to spend my time at MD visits and getting fills and trying to put back what was missing. I kept the "healthy" breast for now - because of my sexuality and body image, but I am watching it like a hawk and if so much as burps it is gone.  I was 48 when this started.

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  • XmasDx
    XmasDx Member Posts: 225
    edited April 2011

    Hi honu!

    You may want to search this topic from the past week started by Elefam because there is a similar thread that may be helpful to you... 

    I opted for uni-Mx with DIEP reconstruction, but as your doctor said there is a large increase in BMX recently for many reasons.   I'm also 41, and I know it is not an easy decision.  Ultimately you just need to give it a lot of thought (as you are), research, think about it, sleep on it, and then go with your own gut and not look back or second-guess your decision when it's over!  

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  • terrij152
    terrij152 Member Posts: 530
    edited April 2011

    Hi Honu, this is the decision that every woman having a mastectomy struggles with.  I chose to have a BMX done because my MRI showed 14 other masses between both breasts.  My breast surgeon felt they were all benign, however if any of them changed I'd need to have a biopsy and if any new ones popped up, I'd need a biopsy.  Well that clinched it for me!  I didn't want to have to go through any of that again.  I had BMX with lat flaps and tissue expander's and exchange to implants six months after the initial surgery.  I can honestly say I have no regrets in having this surgery.  It definitely gave me peace of mind and a sense of relief that I don't have to have a mammogram or MRI every six months like my sister does (she's a BC survivor too).  I do miss the nipple sensation, but there are other things to replace that for me Wink.

    Good luck in making your decision!

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  • honu
    honu Member Posts: 3
    edited April 2011

    XmasDx, you're great to give me the heads-up about Elefam's thread--super helpful.  Thank you.  I REALLY hope I can, as you say, not look back or second-guess my decision once it's made.  I'm still struggling.

    starbeauty, I love hearing you call your breasts "beautiful"--it's interesting to me that not more women do that.  Your desire to keep a breast resonates with me, as does your commitment to watching it like a hawk.  Indeed it's the psychological intersection of the two that has me feeling a bit upside down just now.

    terrij152, I'm smiling about your "other things" comment.  It's the piece I wish I could better predict...the degree to which I'd miss erotic nipple sensation.  You're inspiring!  :-)

    So much appreciation to all of you for the speedy replies.  I feel buoyed.

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  • mdg
    mdg Member Posts: 3,571
    edited April 2011

    You can see my stats below and I chose BMX.  I figured I wanted to reduce my risk as much as possible of recurrence (I was a candidate for lumpectomy) and reduce my chances of getting it in the other breast.  I was smaller chested before surgery (A+ or barely a B) and always wished I had been a bit bigger.  I was not given choices about what type of reconstruction really as I am thin and an avid exerciser so the flap and muscle procedures were out for me (both PS said they could not make more than one tiny breast with my tiny tummy).  My only real choice was implants.  I am OK with this.  I have my last fill tomorrow and I will be a C after my exchange surgery.  My PS says since I was doing BMX that it would be easier to achieve symmetry since he had a clean slate to start with.  He said that is easier than to try to match up to a real breast, but he does match up breasts all the time.  I am comfortable with my decision and can't wait to get my exchange surgery in June.  I know this does not mean I won't have a recurrence, but I wanted to go with the odds and know I did everything I could.  I also figured if I go through both sides at once then I will just get it over with. 

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  • Letlet
    Letlet Member Posts: 1,053
    edited April 2011

    honu, as soon as i was diagnosed, i told my BS quite forcefully that I wanted a bilat. He then told me that the chance of it recurring in the contralateral breast is 5% and I thought that was a bit low for a drastic measure (just my opinion). I thought and though and thought about it and I ended up being a uni because I wanted to keep a part of myself with feeling, so far i am okay with my decision and pray i wont regret it.

    Also just wanted you to know if you have a certain number of positive nodes, you may still have to do rads. I had no positive nodes on imaging but turned out to have 6 therefore radiation was recommended.

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  • honu
    honu Member Posts: 3
    edited April 2011

    A quick morning message to say how much I appreciate all the responses yesterday.  I'm feeling far more energetic and happier this morning.  I'm not yet ready to say my decision is final, but I'm clear now that before I would do a bilateral, my heart and spirit would need to catch up to my head.  In other words, it's as if I WANT to want a bilateral--for all the logical, statistical reasons--but I'm just not there.  I've made a concerted effort the last few years to allow myself to trust my intuition more--to honor my feelings vs. all the "shoulds" I constantly come up against--as I've tried harder to avoid fear-based decisions.  Thus, I'm trying to go with my gut without judgment of myself, and without worry that I'm making the wrong decision.

    Many thanks for the support. 

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  • Faithroad
    Faithroad Member Posts: 432
    edited April 2011

    I'm a little late on this conversation, but I still want to pipe in if it's ok.

    Yes, you really have to go with your gut as well as all the statistics and information etc. 

    I encourage you to do what you know deep in your heart to do. Don't just do what people tell you to do. My church was praying for me and I think God got through to my heart. Because I felt strongly that I wanted a bmx though it was not required, and to my surgeons surprise, they indeed found cancer in both breasts. Stage 2 in the left side with the lump and stage1 in the right side, which was undetected up to that point. I thank God that I made the right decision for me or they would not have found the cancer on the right side until much later.  (It didn't show up on the mamo just three months earlier.)  I hear that it is rare to have it on both sides at the same time.  It only happens 3% of the time.  But I did have a clue about the non-lump side:  I had ductal hyperplasia removed from there just six months earlier, which meant it was a high risk breast even though it showed no current signs of cancer before the surgery.  The doctor left it up to me to decide about the bmx, he was not as concerned as I was about the right side. But, I didn't want anything high risk left behind.  I didn't want to go through this again. And it was the right decision for me.  You will know what is the right decision for you.

    Praying you will have wisdom and peace for your decisions ahead.

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  • shells43
    shells43 Member Posts: 1,022
    edited April 2011

    Piping in too, my surgeon never really asked what I wanted, just scheduled me (it all happened very fast). I'm not complaining, but sometimes I wish I had a BMX. When do I feel that way? After my first post BC mammo when I got called in for closeups and US, which ended with a negative MRI. When I go swimming. When I can't find the right foob for the outfit I'm wearing...I did not have reconstruction. That said, some days (nights) I'm glad I have it, for those reasons already mentioned, although I wouldn't call it beautiful after nursing two kids. It is mine though. If anything crops up, it is so gone! I'm glad I have that option though, once it's gone, it's gone.

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