Forum Discussion

gerbera's avatar
gerbera
Member
3 years ago

Mastectomy/ reconstruction or radiation/ hormone therapy

Hi everyone,
I’ve had lumpectomy for high grade DCIS 
early cancer cleared after 2 surgeries with successful margins. (sentinel node biopsy clear) Was all set for radiation, standard treatment. My sample was sent to the USA as a part of the DCISionRT study. (They examine the exact biology of your cancer and determine chance of reoccurrence to see if radiation is really necessary). Mine came back highly elevated risk- 9.2/10 or 42% chance. Radiation brings it down to 15%. I am a really active 54 year old.. thought I had a lot of active years left. Not keen on osteoporosis. I already have a lot of joint pain from old sporting injuries too, so really not keen on hormone blockers for an extra 3%. 

I am now considering a mastectomy and reconstruction as the outcome could  be a lot better at this stage with skin that hasn’t been radiated. The biological make up of the cancer indicates such a high chance of reoccurrence, Chances of spread are reduced and no hormone blockers needed. 

Am i being silly contemplating this after having a successful lumpectomy? 

Is living with implant reconstruction comfortable? Do you fully recover and get full strength/ range of movement? 

My decision is really urgent, radiation due to start next week. 
Would love thoughts on those who have gone either way. 
*asked to join the reconstruction group, but not admitted yet. 

4 Replies

  • gerbera's avatar
    gerbera
    Member
    3 years ago
    Hi @linners thank you for sharing your experience. Really great to know that it is possible to be comfortable and regain my active lifestyle if I proceed with reconstruction. I don't think I'll be doing a PB in a marathon, but keen to be back with a strong core, doing push ups, planks etc. Congratulations on your PB. That is an awesome achievement at the best of times, let alone 6 months post surgery! 
  • gerbera's avatar
    gerbera
    Member
    3 years ago
    Hi Julez1958, thank you for sharing your experience.  I am so,so anxious about  the cancer returning. I am in Sydney too.
  • Julez1958's avatar
    Julez1958
    Member
    3 years ago
    Hi @gerbera
    I was recommended a mastectomy and ended up having a double then reconstruction ( DIEP flap using your own tummy fat rather than implants) .
    My main reasons for the double mastectomy was I didn’t want the ancxiety of waiting to see if the cancer cane to the other breast ( my surgeon said it was a 10 percent chance).
    I am 64 and had the mastectomy 2 years ago and the reconstruction 1 year ago.
    These decisions are not easy and very personal - I was lucky I had the funds to go through the private system and was semi retired so took as long as I needed to recover from each surgery.It took about 6 weeks to recover both times.
    Joining the reconstruction group on here us recommended - there are lots of stories and photos on there that helped me come to my decision which I don’t regret.
    You can add your city or region to your profile and people may then give you more targeted advice.
    I am in Sydney.
  • linners's avatar
    linners
    Member
    3 years ago
    Hi @gerbera - I was diagnosed last year at 53, came through lumpectomy and 12 weeks of chemo/herceptin before tests indicated that a mastectomy was the best way forward because of the high risk of it coming back - so I had a bilateral mastectomy in June with delayed implant reconstruction.  I've had my implants since March this year and have no regrets.

    I've been on aromatase inhibitors for close to 12 months - with potentially another 9 years to go - and take a vitamin D supplement.  I train 6 days/week so can't really tell whether the joint pain I do have is from the AI or from the level of exercise I'm doing!  I have found that if I don't keep my hydration up, the joint pain is significantly worse.

    In terms of recovery, apart from the downtime post surgery, my recovery has been really good.  I have full range of movement (keep up the exercises the physio gives you!).  I ran a marathon earlier this month (6 months post-final recon surgery) and posted a PB.  I'm still not back to full strength with upper body weight training but I went in expecting that to take 12 months and I'm on track for that.  I am also being cautious with chest exercises because I don't want to damage anything.  Best recommendation I have here is find yourself an exercise physiologist and work with them.

    I don't find the implants uncomfortable - the lack of sensation is a little weird, and if I run in the cold/rain, they have a tendency to stay cold longer, but outside of that, I don't really notice them.  But I love not needing to wear a bra!!!!

    I don't think you're being silly.  For me, the relief of not having to worry about when the cancer came back made the decision an easy one. 

    Good luck with your decision - and with your treatment.