Experiences of mastectomy and reconstruction with ME/CFS


I am new to the forum and looking for some shared experiences of cancer surgery from people who also have ME or Chronic Fatigue Syndrome.

I’m due to have a mastectomy and possible reconstruction in late February and I’m really nervous about the effect of such a big surgery on me with the ME/CFS. I’d be really grateful if anyone could share their experience of this surgery, the general anaesthetic and the overall recovery time if they also have the condition.

Many thanks.

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Hey :slight_smile:
I have M.E, EDS, MCAS, PoTS and a few other bits and pieces! I had a bilateral mastectomy and right node clearance with goldilocks just this monday (8th Jan) so still very new. I have found this week tiring, and the pain meds havent helped with me just dosing off, which is playing havoc with any kind of sleep pattern. However, I was fine with the anaesthetic and came around okay but in pain (my EDS was the reason for that though!). If you choose to go with a simple mastectomy, I would maybe ask for them to keep you in 1 night, so they can keep an eye on you and you can get a feel for how your body is doing. Have you had any kind of surgery before? I had a few smaller ones and wasn’t worried about the anaesthetic tbh, but you should maybe plan to have someone help you out for a minimum of 7-10 days. That would be dependent on what reconstruction you were hoping for? They point blank refused to do any on me, but im actually pleasently surprised with my goldilocks outcome, and it means I can have lipo-contouring instead of skin flap in the future, minimising M.E and fatigue issues.
Is there something specific that you’re worried about with your M.E?


thanks so much for your reply, i really appreciate you taking the time to share your experience.
I was worried about the effect of having a general anaesthetic for the mastecomy and possible reconstruction because I’m sensitive to other medication/drugs due to the ME. I think I’m getting my head around that now as I came round from the lumpectomy OK, it just took me an extra day to get out of hospital, as you suggested.
I think i’m now trying to understand how much worse the ME will be after a big operation like a reconstruction. It is taking me a while to get the fatigue down after the lumpectomy and node removal in November, which feels like slow going. I’ve not been offered a goldilocks option, which I’m disappointed by because i think it would minimise the impact on M.E., as you have said. They have said I’m just about OK to have an own tissue reconstruction which would be about 8hr surgery - eek!
Do you mind saying why they wouldnt offer you a reconstruction - totally understand if you’d prefer not to, as these are very personal experiences?

I hope you’re recovery is going well and thanks again for your reply.

I hope its helpful just a little. I am so sensitive to medication that I had to take my own pain meds with me to make sure I got something, as they don’t prescribe my usual! And they had to order special dressings in for me due to skin reactions! But, everyone is different, so please be kind to yourself. Its so difficult having M.E in the first place, you dont need added pressure.

My pain is definitely in my node removal side, but remember that you won’t have that with your next surgery. Are you having DIEP? I have heard that the first couple of weeks can be quite rough, mainly with the abdomen wound, but you can plan ahead, maybe rent an electric sit/stand lounge chair to sleep in? Get a heated blanket etc. (what works for you usually?). Dont look at the next surgery as “worse”…its just the next step for you, and the ultimate end result will be worth it! :slight_smile:
They refused immediate reconstruction on me solely because they want to do more chemo and then Radiotherapy. I wasnt happy! The goldilocks option is very new, and not many do it. It was an option due to how large I was originally, but at 37, I point blank refused a flat closure as well! So we had to think around that.

I really hope it goes well for you xx