I am upset today. I am now 7 weeks post RT and still cant go for a walk with my daughter and the dog! I have lympheodema around scar and where haematoma was but this is no where near as bad as the radiothearpy damage and lymphoedema around the nipple area which is really painful. I am on my third lot of antibiotics for stabbing pains that GP thinks is cellulitis. I wish it would heal so I can get on with my life!. Has anyone else had such a severe reaction from RT?
Hi
I rang the BCR Monday and left a message on the answer machine but no one rang back. I have an appointment at lymphoedema clinic tomorrow then looks like back to GP. Lymphoedema nurse said that RT damage will make therapy difficult and said she was phonng BCN a week ago to discuss as therapy can make things worse when still reacting to RT, BCN told her to tell me to phone her. Last time took 2 and half weeks to get an appointment at clinic. Had been told I would be seen within 3 days if radiotherapy had concerns. Radiotherapy told me to go to clinic see consultant and took 2.5 weeks not 3 days. Said I dont usually see anybody for 6 months , after exam said done right thing you have RT damage and lymphoeda refer to lymph nurse. Thing is I still have this RT damage going on and not just skin deep but down through tissue in nipple area that has caused some cellutis to get in and 3 lots antibiotics from GP. Consultant said RT damage which it is when I asked at radiotherapy dept to see consultant told it wont be radiotherpy damage now too long since RT peaks 2 weeks etc etc. It is definately RT damage been reacting all along. I feel as if nobody wants to know or asvise right now and I am left here at home not able to walk far with a slow healing boob. I feel so frustrated I dont know which way to turn. I only had a lumpectomy I should be up and running around by now. I need to get back to work as family college fees on the horizon.
That was a good idea re panty liner.
Hi pat2
Sorry to hear about all the issues you have been having. You really seem to be passed from pillar to post!
I had a lumpectomy but this healed well. However, I had 'been and done' with my breast cancer but was dealing with an MRSA wound in my leg for twice the time of my breast cancer treatment. I had a road accident at aged 17 and had skin (and muscle) grafts on my shin and then the rest of it was left to heal as normal scar tissue. This scar tissue is naturally a lot weaker and any cut takes a long time to heal. A year before my BC I had cellulitis in my leg, eventually it was diagnosed as an MRSA infection and it kept spreading across the whole of my scar tissue - I even ended up in hospital and had intravenous antibiotics for 10 days, but it still didn't heal it.. I kept asking to go to the hospital in a different county which had carried out the skin and muscle grafts - no joy, as it was different hospital trust (not so in 1984 - you were sent to where there were specialists which you needed). Nearly 2 years later, I totally lost my temper with my doctor and pointed out that I'd had cancer, got over it and still was fighting this MRSA infection and 'laid it on thick' about how desperate I was feeling. He finally referred me to the specialist plastic surgery hospital. Within a MONTH of seeing the plastic surgeon my leg had healed!!!
The plastic surgeon's advice was to leave the wound open to the air as much as possible. Wash it daily with Badedas shower gel (I found the shampoo and shower gel) because he said "it contains horse chestnut" and it "seems to work". That was all I did and I'd spent over a year on antibiotics and stopped taking them because they weren't doing anything, all the 100's and 100's of dressings, creams etc etc I had for 2 years from the doctors and it was a simple as let it breath and Badedas shower gel!
Quite often the cellulitis is caused by the skin stretching and swelling, thus cracking and allowing the bacteria in, but probably got in through your wounds /RT burns? However, I would say that you need the first help from the lymphoedema clinic to get the swelling down so it doesn't blister further from the swelling. In the meantime you can test out what worked so well for me in clearing up the infection and helping it along the way to clearing it up and hopefully the lymphoedema clinic can prevent it occurring again.
I still use Badedas shower gel now in case if I nick my scars at all, my leg's still getting the same working treatment.
Kindest wishes,
I kept reading that as Badass shampoo!!! I was told told to expose my breast to fresh air daily while having RT. I used to sit in bed for an hour after it with a cuppa while exposed
Hi Lesley,
Thank you so much for your reply and the good advise. How awful having MRSA as well as BC you have been through alot. I hope you are now keeping well after such an awful ordeal.
I have never heard of Badedas shower gel but will definately look it up and give it a go.
I have an appointment at lymph clinic tomorrow and also managed to get an appointment at the radiotherapy dept to see radiotherapist nurse so hopefully by end of tomorrow I might know more, fingers crossed.
Many thanks again and best wishes,
Pat
x
Sorry ,In need of a rant!! :)
the radiotherapy nurses today told me as far as they were concerned from a radiotherapy point of view there was no damage nothing to worry about it was something else and down to the breast care unit. Infact many ladies had pain 2 years on and went to work! Couldn't believe it. Very adamant indeed. I then explained that there was radiotherapy damage because I had been through it past 7 weeks and now left with pain in nipple when walking and lymphoedema plus on third lot of antibiotics for suspect infection. Once they realised I wasn't taking the bull ( apologies ) as surgeon had even diagnosed RT damage and lymphoedema couple weeks ago and no infection they then decided it would take time to heal internally due to severe reaction to RT. Bit of a change in direction! Trying to cover their own backsides I guess. I had explained that I was concerned about RT during the sessions as I was getting pain some days walking and even in car on rough road surfaces while travelling to RT sessions. The consultant radiographer had even been concerned about doing the RT due to haematoma. Sounds as if they had labelled me a worrier instead of listening to me from what one of the RT nurses said, pathetic, insulting and very unprofessional. When will health professionals learn to listen to the patient again, I think this is a wide spread problem in NHS. I have had so many health officials now not listen and make their own mind up and deflect problems and ignore symptoms its absolutely incredible and shocking and has had detrimental effect on my subsequent health and treatments. They spend their time deflecting instead of diagnosing and curing........what a waste of time and money. Why are things this way. No point in them being there when they are like that. The surgeon is the only one who doesn't do this, he admits his surgery was at fault re haematoma and has also diagnosed the RT problem and also lymphoedema caused by RT he is open and honest. Pity the rest cant take a leaf out of his book. If they don't admit to RT damage then its not recorded and other poor ladies or gents could have the same problems as I have had left with pain when walking 7 weeks post RT and not knowing how long this pain is going to last. The nurses in RT seem scared of Drs in their dept and tell you if I refer you the Dr will only say its not RT damage its something else so no point. There was a point week 2 week 3 week 4 and even week 7 post RT to refer to their Drs and if they had done so I would have had expert advise and care earlier and been on a 6 week intensive course with lymphoedema clinic by now and on my way to being well again. I hope they are right and it will get better over next few weeks. The one RT nurse said it was too soon to say if it was a late effect time will tell.
I had my routine mammo marked as clear when the tumour was evident and found tumour myself at 2.5cm. Went in 2 weeks post op because I knew something wasnt right as wound looked puffy and I was getting more pain when doing the exercises. Told all was OK and what I needed was to go out for lunch! Haematoma got much worse and when they decided to listen and diagnose haematoma the blood was thick and difficult to drain. Guess an ultra sound would have been better than lunch out. Visit to radio therapy dept few weeks back was "All Ok from radiotherapy point of view and stick a dressing on it go home ( fuss pot attitude), still couldn't walk about much so went to clinic surgeon saw RT damage as evident visually ( orange peel effect around nipple, thick skin dark area etc) as well as on ultra sound. Guess an ultra sound rather than a sticker weeks ago would have been better ,as I would then have been on the lymphoedema waiting list weeks sooner. Now delayed yet again due to continual deflection. There are many other instances I could gripe about .
Going to carry on wearing sports bra day and night and pain killers to get a walk and see what its like in couple of weeks. If its not improving going to see my GP.
Sorry for the moan just had to get it out of my system. I know I am lucky really as I am still here.
Hi Ann
Thank you Ann for the hugs and best wishes.
xxx
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007