Post Mastectomy Pain Syndrome


I’m posting this in several places so as many people as possible read it. I’ve been in constant pain since my failed recon in July 2008 to the point where I’ve been told by several Surgeons that ANY further surgery is out of the question for me. On Thursday I found this on the Internet

I certainly wasn’t warned this could be a possibility. Was anybody else? Had I known then what I know now, I’d have chosen a different route, possibly increased surveillance and not surgery…


Hi Trudie,

I too sufferred from chronic pain post mx wich my consultants didn’t tell me about until I complained and they sent me to the pain team for treatment.
I had a mx and immediate diep recon in oct 09 and sufferred from pain from the outset, eventually in feb 10, one of the surgeons referred me to the pain team and I was put on tramadol orally and emla cream to rub in 3 times daily. This did work but I was so drowsy from the tramadol that I reduced the dose to 1 in the morning and 1 at night so I could continue to work. It was mentioned at this feb appt that this was a very common problem but ladies were not often informed about it until they complained, they also informed me that it was so common that they thought the team may well carry out a study and write up the results. What is that all about then?
Luckily for me I have had further surgery and “touch wood” that does seem to have worked, now I just get the odd pain or 2 but nothing so severe as it was.
I am sorry that this has happened to you and can only sympathise and hope you get some relief.

Marjay xxxx

It is outrageous that people are not given to understand the implications of what they are undertaking when treatments are recommended to them, when these things are known by doctors to occur, but just not considered by them to be important because they assume on the person’s behalf that it would not make a difference to their decision to have the treatment.

They have to realize that in some cases it may make that difference, but even where it would not, forewarned is forearmed and the distress that goes with any procedure can be reduced to the unavoidable by being told what could happen before you commit. Communication is so very very poor, so very very often, so many people’s distress is compounded by doctors just not taking the patient’s experience seriously.

The worst of it is, even when you ask and ask and ask every question you can think of, from every angle you can imagine, so it is obvious to them you want to know what you’re letting yourself in for, you don’t get told what they know, and what they know you need to know.


Hi All
Thank you Trudie for highlighting this. I am another one with chronic pain. Mast and immediate recon March 08’ ever since I have constant pain in my ribs like I’ve been kicked. I used to constantly fret that I was experiencing rib secondaries. I had terrible problems with fat necrosis following my recon and had terrible pains just like those described by the article. I had to have further surgery to revamp the recon as it collapsed and looked awful aswell as the constant pain and since then it both looks and feels a lot better but the chronic painin my ribs remains. I have recently had acupuncture but the relief was minimal. I’ve learnt to accept it now and worry less about it being secondaries as I have had the pain for so long now. Also I’m incredibly active climbing and running half marathons/triathlons, if I’m really honest my activity levels probably don’t help my pain levels but I’m too beligerant to give in to it but it makes me less comfortable to nag the medics about it as I know I won’t want to hear their recommendation.
Thank you very much for highlighting this article and the existence of chronic pain post Mx, it makes me realise at least I am not a)alone in this and b)going mad and imagining it
Good luck with yours xxxx

I too have constant pain in my ribs and just above my waist and to the side (at the bottom of the LD muscle from where the flap was taken); I can live with it - it is tiring but I think I had it easy with just a mastectomy and no chemo/rads. I have the other issue that my scar has stuck to my back, so fat is bunched above it and the area below doesn’t move and you can see my ribs underneath it. I am active and run about 20k per week and if I don’t run, my back seems to tighten. I feel a bit frustrated as I can’t understand why I wasn’t given any physio (other than the stretching exercises in the first week after the op) or advice as apparently the sticking scar could have been prevented. Has anyone else found a way to solve this? I’m now having a massage once a week at a Mulberry Centre, but my doctor says this is unlikely to work - but has no other suggestion.

Rib pain here too and re-assured that it’s the muscle pulling where I have had expanding implants in. Have had scans on ribs etc…it’s horrible all this worrying hey?!

If there is one thing that really irritates me about post MX is having the loads of swelling (still after double mx in feb’10) at the sides under my arms…when does that settle down?

Paula xx

Still got swelling under the arm after 7 months… It has got a LOT better in the past month - I am no longer aware of it rubbing my arm as I walk - so there is still plenty of time for yours to get better. My consultant says we are all too quick to want it to be fixed, but to be patient!!

Dear Annie22 and jbug,

I am a bit concerned to hear that you have some swelling at the sides under your arms - I ahd this too, was told it would settle, but as I was concerned about it I insisted on being referred to see a lymphodema nurse, convinced it was that. the consultant and breast care nurse said it wasn’t, but when I saw the lymphodema nurse she said that was exactly what it was - trunkal lymphodema.

I would ask to be seen by a lymphodema nurse to make sure that it is not lymphodema.

Hope it all settles.

Trudie, I’m so sorry to hear about everything. I also remain deconstrucetd, and cannot face having any more surgery as I believe it will make things worse. My pectoral muscles (since I had the implant expanders removed)seem to be floppy, weak and also seem to be “shrivelling up” if that makes sense! The initial tightness has subsided, but I too have been left with this discomfort over the area of my ribs- had a bone scan done as well- ok, thank God.Also, side of rads, where I had by original MX seems to be tightening up again and I think it seems to be sticking down and forming a big wedge of scar tissue. Do you mind me asking, why have the doctors said that you cannot have more surgery done?