Hideous scar after mastectomy and node removal. Is this normal?

I had left side full mastectomy and level 3 ANC. I also thought that I would have a flat scar - it isn’t. I had a very large seroma ( 1litre of fluid drained from it) that stretched the skin. It’s left me with rolls of skin and large indentations . The radiotherapy has left me with lots of broken capillaries and a very obvious discoloured rectangle on my chest. I like you wasn’t warned that this is what the scarring would be like. Because it isn’t flat my prosthesis doesn’t sit well and gets ‘caught’ in the largest indentation. I saw the reconstruction surgeons in January to look at ‘rebuilding’ me - he wouldn’t put me on the waiting list till I’d seen the reconstruction nurse to discuss the possible results. I was due to see him again in April to be put on his list ready for surgery in October - this got cancelled due to Covid so I have no idea when I will see him again. There isn’t a day that goes by when I don’t have a cry in the shower about what has happened and how I look and feel ( the area feels very ‘tight’ almost like I have a band around half my chest) I do feel that there should be some form of counselling before the surgery - this may happen at hospitals other than mine as I feel on reflection the information I was given before surgery was very limited. I’m a year on from the surgery so don’t think there will be much more improvement.

I’m so very sorry for you both, And hope things improve, but do please realise that because it’s all ‘soft tissue’ it’s actually a big operation and there’s an awful lot of deep healing for your body to do.

I too was rushed back into theatre 30 hours later as I’d bled even beneath the implant, so my original scar was reopened to drain and cauterise the bleeds. Even the implant had to be re-done. I’m now over 2 years post Mx and my ‘boob’ is still changing shape slightly and settling down. 

Im glad that you’ve both looked at your scars, in a way you can regard them as battle scars or war wounds as they show you HAD cancer but now haven’t! Your surgeons will advise and sort things out to improve your shape as soon as it’s safe to do so, or refer you to plastics surgery if needed. I hope that you’ll eventually be happier with your shape. In the meantime please do make use of the site, and your team and seek counselling if you need.

hugs xxx

Thank you for replying. I also had a seroma and am not sure if that was a cause of the bad scar. The second time I had it drained it sucked in and stuck almost like one of those vacuum pack storage bags and that was it - ugly lumpy and jagged. I was horrified and still am. I have just finished radiotherapy and made sure I took photos before it so that doctors could not say the radiotherapy caused it. I was due to have a nipple sparing mastectomy which was cancelled due to Covid and my surgeon didnt turn up on the day - I had someone different who made errors. It does feel very tight. Let's hope we both get a nice reconstruction one day in the next year or so. I don't feel I can move on until that happens and have been getting very cross about it all. 

If it’s fully healed, scar-wise, and radiotherapy-wise, but still feels tight, have you begun massaging at all? I’d check out if you’re safe to do so with BCN and also what they recommend using, but I used a bio oil as soon as I was allowed and think that helped loosen the scar a bit.

hugs xxx

I've used rosehip oil as recommended by the Haven the first time round. I've used it on surgery sites on my feet. My daughter in law used it on her keyloid c section scar all with good results.

Massage with anything helps though.

Thank you for the reply. Yes I massage it everyday but it doesn’t seem to make any difference to the tightness , though the skin has softened a lot, I’m assuming it’s due to the radiotherapy.The reconstruction nurse thought that , even though I haven’t got any limitation of movement, that some physio would help. She asked me to contact my BCN to arrange it as she is based at a different hospital trust( my local hospital don’t do DIEP surgery and my surgeon won’t do an implant after radiotherapy) . The BCN that I spoke to ( I don’t have a specific named nurse to go to) said she would ask my surgeon if he thought I needed it and if so he refer me. I’m not sure how he would know if it was needed as he’s only spent about 10 minutes in my presence since my op. As I have heard nothing ( and this was well before lockdown) I’ve got to assume that he thinks it’s unnecessary. I should be due my yearly review in the next six weeks so will be quizzing them about it then.

I had a mastectomy on 27th March and haven’t seen my surgeon since before the operation. I’ve no idea what the norm is but my scar is 21 cm long! It starts right in the middle of my chest all the way to my underarm. It’s quite high up and shows above my bra. Don’t think a reconstruction would even be possible even if I wanted one. Didn’t expect it to be so huge!

I've got a long scar,much s you described yours. I also had ehats called  dog ear flap in my armpit. I had reconstruction and then dof ear was removed after that. Speak to your BCN and ask if someone will ser you