Also, I menat to add Laine I totally understand the way you feel. My prognosis was "good" but I dont think that makes any difference mentally. I think once you hav ehad it the mental scars never go away. I can go a few weeks and be OK and then I get a slight symptom of something and immediately decide it's back!!! I seem to spend my life at my GP who thankfully is lovely.
It's like you say - the post op problems such as lymphoedema are a physical reminder every day so it's SO hard to try and forget.
I have to deceide what to do after 5 years on Tamoxifen in two weeks at once appt so more *** truama there!
Love Alise x
Thank you Laine and Anne.
It's a nightmare isn't it even after over five years i still think every little thing is something! I was due at hospital on Monday 6 JUne but had a letter this morning that they have changed it to Wednesday 8 June so 2 more days to wait!! Grrrrrrrrr!!
I have had an ultrasound so I doubt they will do another but at least I can show them what I mean!
Thank you again for your replies.
Just noticed your post. I was at the surgeon yesterday to check hard tissue and pain in my breast.
I had WLE 6 FEC and 20 Rads last year and i just noticed last week that my breast looked swollen and different.
Saw my surgeon at the rapid diagnosis clinic and was sent for an ultrasound. The thickening and hardening tissue is Fibrosis from the Rads. The surgeon says lots of ladies get this condition after treatment.
I am so relived thought it was something more sinister.
Hope this helps.
They are both under and over the skin - I put it down to rads damage - and I had two scars, one from op and one where haematoma was. To be honest every time an onc looks at it they just say oh that will last years. Sometimes the lymphodema is worse than others, especially if I have carried too much or stretched and I sometimes think it has spread from the breast to my side. Then I have other times when I can't feel it at all and almost forget..I know exactly how you feel about things. My original dx had a pretty good prognosis but I am forever thinking it has come back and these post-op problems make it so much worse. I have my onc appointment next month and the yearly mammo/surgeon in September and am already staring to get panic attacks just thinking about it.
Best Wishes, Laine
Thank you all for your comments.
I have an appt with breast surgeon in ten days so I will get her to look. I was down to once a year appts but now she said come every 3 months while she keeps an eye on the lymphoedema. It's good I suppose but I just feel its never ending!!
Laine - when you say you have these hard patches are they under the skin and not on top and also are they near your scar?
I too have these hard patches, fibrosis, and lymphodema in breast. I am just coming up to 5 years since dx.
My WLE was four years ago and I've also got lymphoedema in my affected breast. I've had hard scar tissue since the surgery which still worries me but which I'm told is normal and nothing to worry about. However, it does seem to be very gradually getting better.
Yours is probably nothing to worry about but I definitely think you should get it checked out especially if you believe it's got worse. If you don't get it checked you will go on worrying.
Lots of luck and let us know what happens. Love Anthi
I'm just one year post dx but could it be fibrosis? I had WLE and 25 rads and was told my boob could shrink and harden due to the rads. So far it hasn't hardened but i apply organic oil if i feel it aching. Can you ask your GP or BCN or whoever is treating you for the lymphodema? You really need to ask as you will just continue to worry.
I had a lumpectomy 5 years ago and behind the scar has always been very hard which I am presuming is internal scar tissue.
I recently got lymphoedema in the breast and I dont know if I am imagining it but the scar tissue seems even harder! I had a scan on the breast 2 months ago when I got lymphoedmea which was OK but i Cant help worrying - has anyone else got hard scar tissue behind scar 5 years down the line?
Thank you ALise x