Was sure I wouldn't reconstruct, but then...

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sarabhealed
sarabhealed Member Posts: 179
edited June 2014 in Living Without Reconstruction After a Mastectomy

I used to post on this thread and really appreciated all of the support and ideas about prostheses etc. I was amazed at all of the options, and given my personality and priorities it was important for me not to do immediate reconstruction. I totally get and respect the decision not to reconstruct--but I wanted to share why I ended up going in that direction in case it might help someone. I have never heard anyone else experience this...but I know I would have appreciated knowing I wasn't alone.

Even though prosthesis worked fine for me, I had a few major unforseen issues that reconstruction ended up solving. One--post-mastectomies I never felt I could get a full breath--it felt like I had an iron band across my chest. Two--my sternum protruded so much I would hurt people if I hugged them or myself if I lay on my stomach. Third--in addition to being flat chested my rib-cage is twisted and my daughter said I looked like an "Auschwitz survivor" and she was right.  As it turned out I am "pigeon breasted" and have scoliosis--I never knew this before--my breasts masked my deformities. I needed the weight on my chest to help with my breathing and to project from and soften my protruding sternum...Anyway, a doctor thought reconstruction might help with these problems and I am so thankful that it did!  So, for most of you I respect and appauld your decision to not reconstruct--but if anyone has any of the problems I did, I just wanted to let you know that my DIEP/GAP surgery made a huge difference.

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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2010

    Thanks for posting your story. I'm glad you found a way to alleviate those problems. The breathing one sounds particularly bad. I think the reason some of us don't do recon is that we want to minimize pain and discomfort. In your case, recon made things better. That's great.

    My experience since having a bilateral mastectomy almost four years ago and meeting so many women, online and off, who have gone through this surgery, is that every single one of us is different--no one solution fits all. Your story just confirms my impression!

    Barbara

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  • sarabhealed
    sarabhealed Member Posts: 179
    edited May 2010

    Thanks Barb--I rhave also really have appreciated your breastfree website--very helpful. I do feel like a "bridge person"-- I totally get why someone would choose not to reconstruct--and it really bothered me when people "assumed" that I should/would. Then when I decided to, there were a few that questioned that decision...I really think we all need to support one another's choices--their are plenty of other people out there that will criticize our decisions--so we really do need to grapple with what is best for us as individuals and make our choices based on that...

    Take Care,

    Sara

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited May 2010

    Hi, Sara:

    So glad you are well and that reconstruction worked well for you!

     Thank you for sharing your story. 

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  • starzhere
    starzhere Member Posts: 162
    edited May 2010

    Your story is amazing.  Who knew that one could experience so many various physical problems post mastectomy.

    ~elaine~

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  • sarabhealed
    sarabhealed Member Posts: 179
    edited May 2010

    It is amazing--but to be clear it really wasn't the mastectomy surgery that caused my issues...it was the lack of breasts that revealed deformities that had accomodated favorably to having the weight on my rib cage. The human body is really fascinating--I'm just glad the microvascular surgery provided the same relief! Blessings all...

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited May 2010

    My feeling is that we all make the best choices for ourselves at a point in time.  We use the best info we can get, examine our values and priorities, and make a decision. That is the best decision for us at that time.  Sometimes we forget that time will pass, and with passing time comes changes--sometimes physical changes, sometimes emotional, sometimes more information comes to light.  With change and passing time we occasionally re-visit the decisions we made earlier, and can discover that a different choice better meets our current situation.  For me, I started out without reconstruction.  That was the best choice then.  As time passed I developed physical changes from the wieght imbalance, emotional changes from the yearly anxiety of the mammogram process, ongoing and increasing fear of a new bc in the remaining breast, and I learned about a reconstruction procedure not available in Maine.  So now I'm scheduled for prophylactic mastectomy with bilateral reconstruction in 26 days.  Will this be the end of my choices and decisions regarding bc?  Probably not.  But for right now, it's right for me. 

    I can see where other women could "change their minds" about recon, and I can see where many women will remain happy with their no recon choice for the rest of their lives.  Either way we should be open to re-examining past decisions and choices as there is always new information coming available and our life situations change over time. 

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