I am a complete newbie to this site, but wish I had found it a few weeks ago. I have sat for the last couple of hours reading through the forums and been so inspired by so many of you.
I was diagnosed with DCIS in January and had a mastectomy on 11th Feb.I almost feel like a fraud writing this, because I had my results last Friday and was given the all clear, no further treatment except maybe hormone tablets, those results still were not back. When I read about the rest of you having chemo and rads my heart goes out to you all.
I do have a question for other ladies who have had mastectomies. I have constant burning down my back and side as if I have had boiling water poured over me, I understand that this is nerve damage, but is it likely to stay with me or does it ease in time?
I had a mx and LD Flap reconstruction for DCIS in December 2009, and I still get that sensation running from under my shoulder blade down to my waist, almost under my arm, but not quite. I only notice it now when I am tired, or when I stop doing things as I think the body accommodates it but it is certainly there . It took a good 8 months for it to ‘dissolve’ to this level but it really is manageable - and as I say, I mostly don’t notice it.
Have you been to your ordinary GP to ask for physio? I did once I had been signed off from the hospital and I got 6 sessions after quite a wait, but it was worth it.
Hi Flossiedog
Welcome to the site-Im sure you’ll find it to be a great source of support as we all understand the things our bodies and minds go through after diagnosis.
Im the same as you,and although I am on Taxoxifen too with no rads/chemo, the assault on your body and mind are just as great in most cases.
Im 16 months since my mastectomy and do get that burning sensation too, but nothing as bad as the beginning, so hold on in there. All the best info says your body takes at least a year to get over the trauma, so be kind to yourself.
I try to swim/exercise to ease the stiffness in the arm.
You are in the very early stages, so keep your spirits up and keep dropping in here-Its been my lifeline.
Cathie xx
Flossie, no-one on here thinks of you as a fraud, so please don’t even consider it. As someone facing just chemo, rads and some other poisons, I was dreading being told I’d get to lose my (rather battered) breast, and felt such huge relief that I wasn’t facing mastectomy.
Welcome to the site, and I hope you’ll get replies from other mastectomy ladies. Meantime, give the helpline a ring and they’ll be happy to talk with you about your worries.
Doesn’t matter what treatment your having, it,s all very daunting. But a least now your here you’ll be amongst people going through the same and similar situations.
I had a mastectomy, full node removal and pec muscle removal 30th November last year. I know you’ve probably been told a thousand times already but do keep up with those exercises, they really do help and will become easier every day.
Also, and this really did work for me - try gently stroking the area that is affected with the burning sensation. It will sting a little at first but it does help to desensitise your skin. Do it quite often and you should find that it becomes less sensitive each time. Good luck with it.
hi following my mastectomy i had this type of burning sensation, i would describe mine more like somebody rubbing sandpaper on it, it was really bad, i had my op november last year, i take amytriptiline, one each night prescribed by my gp i dont know what meds you are on if any but it might be worth mentioning it to your doctor, i couldnt even stand my t shirt touching it at one point, with the tabs its much better hope this helps you good luck love liz
I agree with elizabethtracey, I had this pain and tried the amitryptaline, I took it for a few weeks and it really helped.
I still have some altered sensation in my underarm, back of upper arm but not the painful, always there stuff that it was at the beginning.
Pat
Hope this helps, although i didnt have a mastectomy my breast care nurse did tell my friend ( who has had one) that the actual surgery isnt the most gentle due to the various instruments used & burning. tenderness & bruised like feeling are common for many months but do ease with time.
I agree with elizabethtracey, I had this pain and tried the amitryptaline, I took it for a few weeks and it really helped.
I still have some altered sensation in my underarm, back of upper arm but not the painful, always there stuff that it was at the beginning.
Pat
Thanks so much for all your support. It,s amazing just how many people have been affected by this horrible disease.
Maria , I know what you mean about stroking the area, I have actually found that this does ease things slightly.
Pat and elizabethtracey, I will bear the amitryptaline in mind. I,m not taking any meds at the moment and have’nt been to my gp, but will certainly think about this.
Finding something comfy to wear is the biggest problem, as I feel as if I’m wearing a t shirt or something which is too tight under my arm. I’m not and it is’nt!
Have ordered a post surgery vest top from M & S, so looking forward to trying that as a bra is still really uncomfortable.
Like you I’m also new to this site and also recently undergone masectomy op mid Feb, but recovering well. There does seem to be quite a bit of tingling and nerve damage. Also keep getting fluid build up and having to get it drained off(feel like I have faulty plumbing), but that aside I am trying to keep up with exercises etc and so relieved that op is over!
Thanks for posting on this, sounds like you and I are at about the same stage. I have to say that the burning pain has definately eased, it’s still there, but alot better. I’ve been lucky as far as seromas go, and have only had to be ‘done’ once, but that was at 6 weeks post op. There is a bit of gaping of the wound at one point, so I’ll be glad when that has all healed.
I’m also persevering with the exercises, and find the ones against the wall by far the worst, but hey ho.