Arms after double mastectomy

Hi all,

I’m off to see consultant this pm to see when/if i can have double mastectomy … have had bc in both breast, just finished rt in August and thought thats it, after a recovery period I can get on with my life

My blood test has found that I have brca1 gene so advice is double mast and get rid of ovaries.

Questions or advice on… how long after rt finishes can they do surgery. I know i cant have recon until next year but wish to reduce risk asap… even though i hate the idea of having no breasts… they have to go.

Also after double mastectomy what problems have people had, what recovery time am i looking at. My left arm is already weak from surgery for cancer in my neck… (seperate to bc) and my hands seem to swell on both sides… this is due to chemo apparently!

Oh they are hoping to do oophorectomy/hysterectomy (have had odd smear results for last 6 months!!) at same time as they have a problem when anaethetising me so the plan is to try and do it all together.

Any advice or information would be gratefully received. I’m sorry for waffling on… i have this image in my head of being a mellon on scraping all the tissue out… only im the melon!! Does that make sense… will there be any of me left!!

Many thanks

Hi Wendy. Sorry you’re going though it.
I had breast cancer in 2008 with lumpectomy and radiotherapy. Tested positive for BRCA 2 in April 2009. Now it’s a year this month since then and I’m thinking I should go for a pbm. I really want cohesive gel implants but I have read that they don’t loke to do it after radiotherapy because of the scar tissue you can get after the radio. I would rather go flat chested rather than have a flap. I intend to have a consultation with a plastic surgeon to find out. I’ll let you know how I get on.

Hi Wendy

Sorry to hear all you’re going through.

I had a double mx in June last year. On left side I had BC and had to have a full axillary node clearance. Right side was a risk reducing mastectomy.

The right side I’ve had no arm problems at all. I had a small seroma on the mx space there for a while.
Left side I had a much bigger seroma (now gone). In fact seromas cleared up as soon as I stopped chemo.

My left arm with the ax clearance was very stiff to start with. I did the exercises and still do and this eased in about 6 weeks. I had a shoulder problem before and this has worsened so I’m having physio for that. If you’re not having axillary clearance it should be less of any issue.

Hope it goes well
Elinda x

Hi Wendy

I had bilateral mastectomy July 2008 with axillary clearance on right side. No problems on the left side but large seroma on right which was drained a couple of times before I started radiotherapy. Right arm a bit stiff and sore after op but persevered with exercises, and the position it had to be in for the rads soon loosened it up.I still do the exercises from time to time if I feel my shoulder is tightening, especially the ‘walking up the wall’ which really helps both the arm and the shoulder. I have grade 1 lymphodema in my right arm and wear a sleeve for Aquafit, gardening, ironing and flying. But otherwise everything is fine. I opted not to have reconstruction so now I can decide whether to go boobless, which I do most often, or to put my boobs on and flaunt them!

Best wishes to you and I hope everything goes OK for you

Nonny

Hiya,

I had bilateral mx Feb this year with SNB, I was meant to be having a DIEP reconstruction from the tummy, but as there was a chance I would need rads they gave me expanders implants instead. The plan is to get chemo and rads done, then maybe a year down the line get the DIEP done.

The only problems I have is my left arm, where I had the SNB has made it numb and a little painful to touch. Otherwise everything else has healed really well and very quickly, but I am probably very lucky with that. Slight seroma for about 2 weeks on left side, but soon went down with arm exercises.

Paula xx

Hi
I had bilateral mastectomies (no recons) two months ago (mid feb), and I am now feeling more or less healed. I had seromas both sides over the first 6 weeks - had 4 drainings either side, developed an infection in one side after drainage & had antibiotics for 10 days (that was all uncomfortable but not disabling). Feelings of tightness and pain were worse in first month. Now I am still numb across my chest but I think either I’ve got used to it, or its got less, but it doesn’t really bother me. I have most arm movement back although I do find reaching for things on high shelves abit difficult. Have started gardening & digging again, not quite up to the heavy lifting that I used to do as matter of course. I think about whether I can manage it abit more before I start heaving things. I have reduced my bust from the 42E before mastectomy to a much flatter shape (38B?). I find going completely flat looks a bit wierd on me and my clothes look too baggy, so I use the softies given to me in hospital - and honestly I feel fine about them at the moment. I may change, but I feel so much lighter ‘up top’ that I’m sure I’m happier about it all (of course I would prefer to have two healthly breasts…but then so would we all!). So in terms of recovery I would say that I’ve taken 8 weeks to get to quite a good state - I do have numbness still (maybe for ever), I do have odd twinges, and my seromas are not quite gone but I don’t think they will need draining again, and my arm movements etc are pretty good. Hope this helps!
Good luck with it all
Maggyx