How to make this decision?

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  • BikerLee
    BikerLee Member Posts: 355
    edited March 2014

    hey everyone... this is a pretty darn interesting thread!!!  i was just reading the new bco page on going flat, and i think it has problems...  for example - i do not agree that recovery from mx is the same whether you choose recon or no recon...

    but anyway...

    to address this question:  I have also heard that survival stats are the same for lumpectomy vs. BMX, but I haven't seen any stats on recurrence rates. Anyone have any reliable info on that info?

    there is reliable info on this, but i don't have it handy.  what my care team told me is that local recurrence risk is much lower for mx versus lx but distance recurrence rates are practically identical, which is why the survival rates are practically identical.  i've done a ton of reading - the primary scientific literature - but i don't have the citations handy at the moment.  sorry.

    as for whether there is pressure to reconstruct- oh my goodness yes there is!  even on these boards, the title of this forum (Forum: Living Without Reconstruction After a Mastectomy) implies that LIVING with reconstruction is HARD and CHALLENGING and... well ... .surprise! you can live without recon?  maybe that's me being a little sensitive, but that is how i feel.  compare that to the forum title:  Breast Reconstruction.  in my mind, i think these forum labels point to breast reconstruction as the "normal" choice and the "living without reconstruction" as the booby prize (ha ha - see what I did there? ok - lame attempt at humor).

    interestingly, i've gotta a bunch of really positive energy from friends around going flat.  it seems that either my friends who disagree with my decision have remained quiet on the issue (if that's the case - thank you to them) or they strongly support my decision.  during a race last fall, a friend of mine pinned my number to my skin suit, which - let me tell you - leaves not a single lump or bump hidden, and she commented that she thought it was awesome that i have gone flat and rocked it...  said - if i ever have to make that decision... i think i'd go flat too.  what's interesting to me is that it seems that going flat is becoming a more VISIBLE decision...  and the assumption that going flat is essentially recon-gone-wrong is becoming less and less common.  i feel sad to say that i feel LUCKY to have received no pressure towards recon from my care team.  but i do... i do feel lucky.  and that seems very different from what others experience.

    belleb - i hope chemo has been uneventful so far.  i hope you are able to find peace around this decision.

    and...  well... that's all i've got for now. 

    have a good day!

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited March 2014

    BikerLee and Gals,

    when I was going nuts trying to make a decision about recon my sister & the close friends I talked to all let me ramble but also all asked me, after my rambling, "why don't you just have the BMX now & leave the option for recon later?" It was like DUH yeah why did I think I HAD to make a decision like that in two days?

    And when I woke the next morning I knew I would not have immediate recon & probably wouldn't have it ever. Just so bizarre how during 6 months after the lumpectomy & chemo I never really let myself be open to anything but what the drs *assumed* I would have, a single mastectomy with recon. I guess I was dealing with so much, & was feeling so horrible from SEs that I wasn't listening to my myself. 

    Which brings up the issue of making a life altering decision of surgery while your body & mind is totally fogged & sickened from chemo.

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  • lgoldie
    lgoldie Member Posts: 120
    edited March 2014

    Everybody is different.  I went to the Mayo Clinic and saw the best.  The first question I asked was lump or mast, he said NO DIFFERENCE IN 20 YEAR SURVIVAL RATE WITH CHEMO AND RADS.   So I went lump.  My tumor was 8 mm, not cm, mm.  Very small.  We shall see.  If it comes back or anything, off they both go and no reconstruction.  I a 55 and have large breasts.  Find a great MO and pray for wisdom

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  • belleb
    belleb Member Posts: 170
    edited March 2014

    I'm happy to see this topic getting some action - it really is a tough decision but I have not once waivered from my original thoughts of having a BMX with no recon since starting the thread, so that gives me some faith in my choice. If I was flopping back and forth I definitely think it would be harder to decide. Twelve more weeks of chemo and then it will be time to make the decision for sure. Hope it goes quickly!!!

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited March 2014

    belleb

    You're starting Taxol now? My weekly Taxol (& Herceptin) seemed to go quick compared to the every other week of A&C which was just 8 weeks. Hope it goes well for you!

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  • belleb
    belleb Member Posts: 170
    edited March 2014

    Yes, 12 weekly doses of Taxol...hoping it goes quickly for me like it did for you!!!

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  • BikerLee
    BikerLee Member Posts: 355
    edited March 2014

    i had that same chemo schedule.... and i never wavered from wanting the bmx sans recon either.  

    i hope your first taxol is uneventful and boring...  

    good luck!

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  • mcgis
    mcgis Member Posts: 291
    edited March 2014

    i considered not having recon but i have an 8 year old daughter and go to the pool A LOT. i wanted to make it a bit easier on her, i guess. in years to come she won't be having to explain to her friends why her mom doesn't have boobs... it's all totally personal. i hope you are happy with whatever you decide!!

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