Considering a double mastectomy

Dear Jacks

I am very much in a similar position but except having thought and thought I have reached the decision that I would rather manage less chance of getting breast cancer via an elective double mastectomy than manage the annual surveillance.  2 questions that have helped.  How would I feel if I got breast cancer via the surveillance route and if I get breast cancer I would have to cope with chemo-therapy.  My breast surgeon at Guy's posed the first question and the plastic surgeon at St Thomas's the second.  The former also said there was not a right or wrong answer. I am also clear that I do want implants because I am 67 years old and could never expect to have the look of a younger person.

I see the breast surgeon at the end of April to discuss my thinking.

I have also tried the chemo-prevention routs but the side effects were not good.  This was taking anastrazole.I could try other drugs but the side effects though different will be still be there.

What I have been told that to have a good rapport and trust with the surgeons involved is a must as well.

I am not sure if any of this is a help but good luck with the journey of thinking.

Ricki

Thank you so much for your detailed reply.  I wish you well with your ongoing care.

Jacks

Hi both,

i had an elective double mastectomy last July, I was in hospital overnight and left with a binder and drains. I was visited at home each day by a nurse who changed my dressings and took out the drains after a couple of days. I am having reconstruction using the diep flap in s few months. Although I hated the way I looked to start with, once it had settled I felt much better. 

My 29 year old niece had a mastectomy with immediate reconstruction using the tug method (thigh) in September, she was in hospital for just under a week and needed help for a few weeks when she came home due to the stitches and tightness around the donor site in her thighs . She is very pleased with the appearance of her breasts and the surgeon had even made her nipples, they look brilliant now it’s all settled and the surgeon is keen to improve the look further with some lipo fill. She will then have the nipples tattooed..

We both feel an immense sense of relief that we don’t have to worry anymore. I have had years of checks until I knew for sure I carried the BRCA 1 mutation and found the period before the checks and until I had the result more and more distressing. Our genetics team have put my family’s risk at a lifetime chance of 90% for BC.

Borh my sisters have/had TNBC, one at 29 who after  2 lumpectomies had a mastectomy when the third lump appeared, she is now in her 50’s had has had no further issues..

My other sister was 49 at diagnosis, she had a small lump with no lymph node involvement and had Chemo follows by a mastectomy where it was found that she still had active cells,. She had to push for Chemo tablets as she wasn’t happy to adopt a wait and see. During this time she developed PEs and Pneumonia. It now looks as if she has bone mets. Such is the aggressive nature and unpredictability of TNBC. 

I hope that my daughter who is also BRCA1,will choose to have the Op,at the moment she is struggling with it all- I will worry until she does but it has to be her choice. 

I should also mention that I have had BSO - my mum and her sisters died from Overian cancer 

This decision is a personal one, for me with our risk and my sisters experience it was a no brainier but everyone has their own risks and feelings about surveillance which may point in s different direction..

Good luck with whatever you choose, feel free to ask if you have any questions. 

Thank you for this. It is so helpful to hear people's journey.

Thank you so much for that reply.  You and your family have been through so much, I'm glad you're now feeling a sence of relief and wish you a speedy recovery from your reconstruction.  Take care

Jacks

Hi ..

just been reading through this, and wondering if you have had surgery or decided  which route you are taking? I too am faced with these decisions but won't be seeing my oncologist until Tuesday of this coming week.  I don't care for ongoing drugs and side effects so very unsure what to do. 

Hope you're doing well at the moment. X