double mastectomy

Hi everyone ,have just been told i have to have double mastectomy as cancer has now spread from my right breast to my left one ,and full node clearence so am feeling very scared and upset , so would be nice to talk to someone who has had one or about to have one .josie1

Hi Josie.
I had lobular on both sides, and was recommended a bilateral mastectomy, was going down that road but then had sentinel node biopsy and had clear nodes, so decided to go against the docs recommendations and had lumpectomies on both sides. Even after my WLE surgery which found an extra unexpected 3mm one, they again recommended the mastectomies. I would never recommend going against what they recommend, but I’m Ok with my decision.

The more I read stuff on both this and other forums, most people who have the double mastectomy find its not as bad as they expected. The american site breastcancer.org has lots of posts of people who’ve had bilateral Mx. So if you don’t find many people here you could try there.

Good luck, S X

PS Love your dogs.

Josie

I had a bilateral MX 3 years ago, IBC in one breast with spread to lymph nodes, and I opted to have the other off at the same time due to an awful family history. I can honestly say that my experience was OK. I didn’t have immediate recon so my hospital stay was very short. In one day and out the next. I went home with drains in but my hospital use an early discharge team and they saw me every day at home until the drains were removed. My pain was minimal and controlled easily with prescribed painkillers for a few day.Ask anything you want and I will do my best to give you answers

Good Luck

Andie

Hi

I am having double mx on 29th sep due to very strong family history. Would be happy to share feelings etc

Rachel x

Hi Josie,

I’m having a bilateral mastectomy 2 weeks after Rachel on 12th October. On one hand I am very upset about losing my breasts, but want to give myself the best chance of beating this with no recurrence. I am definitely having reconstruction and have looked into this alot and met a variety of surgeons and plastic surgeons and have also met some women who’ve shown me their bilateral recons - and they were amazing. I was so impressed. Not the same as holding onto your own breasts and I don’t know how I’ll feel after the surgery, but am pleased that there are such good recon options.

When are you having the op? I had chemo first which I appreciated as it has given me time to research the options.

X

Hi Josie

It must be a scary time for you right now. I had a double mx with a full node clearance (on one side) just over two years ago when I was 45.

Is there anything specific worrying you? Feel free to ask away no matter how big or how trivial it may seem or PM me if you prefer.

I was told by my surgeon that although it was a huge deal to me, it was a routine operation for them, they do lots of them (sadly). I had a few weeks of shedding a lot of tears before the operation at the thought of the loss of my breasts but haven’t shed a tear about that since. My main feeling afterwards was one of relief that the cancer had been cut away.

I decided not to go down the reconstruction route and i haven’t regretted it. I rang the helpline when I was making that decision and found the nurse amazingly helpful.

I do wish you well, Elinda xx

Hi everyone , thankyou so much for your lovely messages was feeling so alone ,just have a few ouestions as not sleeping very well put head on the pillow and my mind works over time , have great surport from family and everyone keeps buying me lots of lovely things so its great but only realy want one thing (the bloody cancer gone) so sorry but so upset , have my surgery on 16th next friday so any advice would be welcome , also any imformation on how long after op you were up and about do normal stuff . thanks josie1 (beverley)

I probably took a bit longer to recover as I’d had some chemo first which made me very ill. You’ll be up and about quite quickly but do know it took a while to start feeling normal. Recovery is such an individual thing that its quite hard to say.

You’ll be sent home from hospital with a dressing on the wounds which is usually removed when you go back to the surgeon. Having the axillary node clearance can make things feel very strange at first - you get odd tinglings and shooting sensations and I remember my arm felt very tender to touch at first. I could hardly raise my arm initially but stick with the exercises because they really do work. By about 5 or 6 weeks I had full movement back.

You will need support with things though as you won’t be able to lift with that arm and even basic chores might be difficult. You will need a lot of pampering to start with! My husband was wonderful but working full-time so we got a cleaner in while I was having treatment. We’re not well off financially by any means but it was worth it for peace of mind.

i remember i felt exactly as you did, all I wanted was for the cancer to be removed and its entirely normal to be feeling so upset. take care, Elinda x

Hi ladys was just looking at other forums and would like to no why people were talking about having there ovaries out is there a link , sorry but no one has mentioned it to me . josie1

People who are BRCA carriers have a much higher risk of ovarian cancer (I think about 40% compared to 1 or 2%) and also some people choose to have their ovaries removed to reduce the amount of oestrogen surging around their bodies if they are strongly ER+.

x

Hi again , had to go for pre op assesment today for surgery on friday ,but had to laugh a little as the nurse said have low blood presure and slow heart rate so asked me if i was a runner as very fit people like athletes have the same , anyway felt that if i didnt laugh i would of cryed. so after all the tests im as fit as a fiddle , bloody great realy as now have breast cancer .josie1

Hi Josie

I know exactly how you feel - I was very fit and healthy until they started treating me!

Good luck!
Dx

Hi everyone ,have my surgery tomorrow and feeling sort of ok about it ,maybe because the waiting is over , just not sure but think its because as each day goes by im learning more and more and it seems to be helping , or maybe just my way of dealing with it . speak soon as will be in hospital for 3-5 days xx

Josie, wishing you all the best and lots of emotional support. Hope surgery goes well and you don’t find it too traumatic. Whilst I feel like I have a sensible head on my shoulders I just don’t think any of us can imagine how we’ll feel following the surgery. Big, big hugs. X

Lots of luck and lots of hugs to you, Josie. xxx