Hello, Are there any BRAC1 ladies awaiting a date for their risk reducing surgery? I had mastectomy on affected side on 16 April but have been told I can’t have the remaining risk reducing surgery u
il Covid has calmed down
Hi Bhompston and KT776,
I found a lump on 8th Jan and saw my doc 2 hours later. Was put on 2 week wait (and seen after 3 weeks) to be told that I had a well hidden 4.2 cm tumour (this was 18 months after a clear mammogram. Two weeks later I was told it was Triple Negative and offered genetic testing. I said yes and told my doc that when my mum had her mastectomy 22 years ago I’d asked if there was a genetic risk and had been told no by two docs. When my tests came back I was told I’m BRCA2.
I started 6 cycles of high dose EC-T on 21st February (I was told having this pre-op would improve my ten year survival by almost 10% and since my percentage wasn’t exactly brilliant to start with I wanted to take the opportunity to improve it). I had to fight to complete all 6 cycles because the surgeon wanted to cancel it half way through due to the Covid risk.
My husband and I have shielded together between my appointments and gone to ridiculous lengths with decontamination, etc, to ensure that I could get through the pandemic safely with zero immune system.
i have finished all 6 cycles (the 18 weeks ended yesterday!) but am now in the position where the surgeon is telling me that I cannot have a double mastectomy with reconstructions (what I need and what is recommended by the geneticist) ‘because we just aren’t doing reconstruction at the moment’. I find it hard to consider a double mastectomy without reconstruction (Ive had 22 years of seeing my mum try on new clothes saying ‘Csn you see my prothesis?’ instead of ‘Does this look good on me?’) and in any case, the surgeon is extremely reluctant to do any form of mastectomy ‘because it would mean staying in hospital and it’s too risky right now’. I am having to have a ‘wire-guided side local excision’ on 8th July instead (a lumpectomy ) with a promise of regular scans until we can do a double mastectomy with reconstructions, maybe next year or the year after’. I asked what would happen if I had another tumour appear (quite possible with the gene) and was told they ‘can easily do another lumpectomy’...
The fact that I will have so much breast tissue still (I’m a 32F cup) means that I will almost certainly need radiotherapy once I’ve recovered from the operation - I wouldn’t need to go through that if they’d do the double with reconstruction.
I’m due to have my ovaries and Fallopian tubes out (BRCA2 so 45% risk for me instead of 2% risk for general population). The gynaecologist was originally going to wait until after reconstruction (just in case abdomen skin was needed for some of the skin grafts) but says he won’t risk my life waiting that long now so will do it as soon as I’ve recovered from the radiotherapy.
it was extremely hard to psyche myself up to say yes to the double mastectomy in the first place (I’ve had 22 years of looking at my mother’s badly done scar - they refused to do reconstruction at the time because at 60 she was considered to be ‘too old to need that’
and yes I know surgery has come on a lot since then) - and the thought of waiting a long time and still needing to have it done is not exactly fun. Alternatively I can just do what the surgeon suggests and ‘just carry on having regular scans instead of getting the double mastectomy‘ (he disagrees with the geneticist and thinks it is ‘unnecessary’ !!!) - but then I’ll have the cancer risk hanging over me like the sword of Damocles ...
interesting to see how much all our journeys have all been affected by the virus....
Good luck to you both.
x
