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I need help with my decision - does anyone have any regrets?

InvisjetInvisjet BrisbaneMember Posts: 3

Hello Ladies,

 I too have joined the BC club and am struggling with decisions.

 I’m 46, live in Brisbane married, no kids and in Feburary 2020, I was diagnosed Left breast (8 o’clock) Stage 1A, Grad 2, 8mm IDC, no lymp nodes ER +PR+ HER2-

 Successful lumpectomy with clear margins performed - Yay!

 Its’ small & early stages…Awesome! Right?

 Ahh…but because I had ovarian cancer 13 years ago when I was 33 (hysterectomy  and chemotherapy treatment), it was advised that I get more genetic testing done (I’m BRCA 1&2 neg), so it turns out I have heterozygous Ataxia-Telangiesctasia mutated (ATM) gene. The best answer regarding this gene is that I have a moderate increase risk of getting breast cancer (17%-60%), but does that mean I will have a continued risk after I have dealt with my current diagnosis?

Sigh….so now what do I do?

Do I have radiation and just get rid of what’s left of the current cancer?

My BS told me that ATM could increase radiation toxicity, but the radiation oncologist says that’s rare.

And then wait for it to potentially reoccur or a new cancer in the other breast

Or do I have a double mastectomy with immediate reconstruction? (DIEP preferably)

The problem there is I’m quite fond of ‘the girls” and not sure how I will cope with the loss of sensation? 

Does anyone have any regrets with their decisions?

Comments

  • Dory65Dory65 Member Posts: 164
    Hi there Invisjet,
    That's a lot to consider. Our BC doctors seem to be short on time and the appointments tend to be brief. Is there a specialist cancer counsellor or psychologist (who understands the BC lingo and implications) at your cancer centre, with whom you could discuss this properly?

    There may be a very good BC nurse in your area, who could spend time talking this through.
    Wish I could be more helpful :/
  • kezmusckezmusc Member Posts: 1,479
    Hi @Invisjet,

    Welcome to the forum lovely.  Sux to be here for sure but you wont find a better bunch to walk you through the shitfight that is bc.  It's a hard choice for you obviously.  Ultimately there really is no right or wrong answer, you just have to go with your instincts.
    Personally I had no problems deciding to keep the girls unless it was absolutely unequivocably the only option.  So lumpectomy, chemo, rads and no regrets. Even though I do keep getting dodgy scan results.  

    I think we are all left with that "what if it comes back" no matter which option you chose. There are no guarantees either way unfortunately.
    You could always do the rads and see how you feel. You still have the other option up your sleeve for later if you so wish.  I believe the surgery your looking at is a big one.  @Kmakm can probably shed some light on that one and I am sure there are many others as well.
    Definitely have a chat with your BCN if you have one.
    All the best with your decision sweet.
    xoxoxoxo



  • CleaClea Member Posts: 9
    Hi @Invisjet I’ve just had a skin sparing mastectomy with diep reconstruction on my left breast. I’m only four weeks out but was quite surprised as I actually have normal sensation all around the outer edges of my breast Especially the side and at the top. It’s just the Center circular section that has no sensation, I can feel pressure on my chest in that area but not sensation on the skin. Early days yet but it doesn’t bother me hugely. And I’m very very happy with how it looks and thats even before they’ve done the revision surgery. Just in case you wanted the experience if someone whose had diep reconstruction. 
  • InvisjetInvisjet BrisbaneMember Posts: 3
    Thank you for responding Ladies.
    @Clea did you have radiation as well or did you go straight to DIEP? 
  • CleaClea Member Posts: 9
    @Invisjet No I went straight to surgery so I couldn't say what effect radiation would have with diep recon sorry.
  • SisterSister Adelaide Hills, SAMember Posts: 4,612
    I'm not in your situation (single mastectomy without recon) but I think @kezmusc is right - it's one of those things that has to be right for you.  Asking here is research but I think that you need some clear answers about risks and treatments as well.  Eg. 17%-60% is a pretty big range - what does it actually mean?  Radiation may make a difference to recon - is it on the cards, or not?  Given your elevated risk, what type of scans are lined up for you in the future to monitor?  And the big one...how do you think you will manage if you do or if you don't?  The suggestion to speak to someone in a professional capacity who can guide you in this is a good one.  Someone like a breast care nurse - or the nurse who does the education about recon in the hospital you're attending (they tend to be pretty honest). In the past, I have found that actually writing my thoughts down into a pros and cons list does tend to make big decisions like this much clearer (even if not easier).  Take care.
  • June1952June1952 Member Posts: 913
    I am a pros and cons list person as well.
    Do all your research, keep the list going and ask ask ask as many in your medical team as you can and take notes for yourself.  Don't leave any appointment until you have the answers you are seeking.  No question or request for clarification is too small or too large.  It is your body and your life.
    It will soon become clear which decision will be right for you.
    All the best.   <3
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