Don't worry I wasn't alarmed. I just wanted you to get all the care you need. I am starting radiotherapy on 18 February. I have had chemo though so not worried about this bit. I am pleased you are asking for a different surgeon. Let me know how you get on. Xx
Hi, I'm really sorry if my message raised any unnecessary alarm re your radiotherapy, I've got 2 girlfriends who sailed through their treatments without any problem whatsoever!!
I started off using Aveeno but a French friend recommended the stuff they use over there for all radiotherapy patients, but I wasn't able to get that until day 6 - pity I did have it earlier on.
All I can say is if you have any concerns raise them with the team and hopefully they would be a bit more attentive than my team were. I'm going to see if I can be referred to a different surgeon for follow up surgery.
Good luck, when do you start treatment? xx
GrannyK, Oh my goodness I am so sorry what an absolute nightmare for you. I can totally see why you would be extra worried having 16 month old twin grandchildren as well. Re your boob battle, can you ask for a different surgeon? Where I am I have been really lucky. We have 3 excellent breast surgeons. Can you ask for a referral to a different one near you maybe? I haven't started radiotherapy yet so I am arming myself with lots of creams in advance. Xx
Hi Sweetie, thanks for your concern, sadly no, my experience has been a total nightmare!
I reported concerns to rad team on day 3 of 15 sessions, I was truly horrified to be burning so early on in treatment!! I presented as an overweight, large breasted, very fair skinned lady with obvious childhood sun damage clearly seen on neck/ chest area - four alerts for possible burning probs. I also reported that my granny died from breast cancer/radiotherapy complications -she died from septic radiotherapy burns aged 61 when I was three months old, as a 60 year old granny of 16 month old twins I was beside myself with worry - not one single person noted any of these red alerts or took them seriously !
I eventually got a skin review on day 10 and was begrudgingly given a very small 40g tube of Flamigel which lasted me 4 days plus one application, my BCN asked Rad. Dept. for more Flamigel cream which again was given 'to keep me quiet' !! On day 13 when nipple/ breast was very red sore I was given Kerralite dressings, On day 14 - skin review records patchy moist desquamation- told no need for any silver cream/ Flamazine until it broke down - go to GP, I was given Polymem dressing with no info re use. One week on excruciating stabbing breast pain, Very burnt purple/red raw patches underneath breast and generally burnt nipple/ boob, ended up chasing around the area (I live in rural North Yorkshire) on Friday night after GP was unable to source Flamazine cream, this should/ could have been given to me on leaving rad dept/Skin review as it was obvious that things were going to get worse before getting better. Feel incredibly let down by the people I gave my complete trust to, not a happy bunny at the moment and I still have to embark on the battle to get second op to 'match' good boob to operated/reduced one - which is a butchered job anyway - gosh I bet you wished you'd never asked !! XXX
Just wanted too say I hope things have got better for you since you posted a couple of weeks ago. Your experiences don't sound good at all. I really hope you have found some more understanding people to help you.
I raised concerns with Rad team on day three of my fifteen days course of radiotherapy. I was told by my named nurse I could get ‘special’ cream from them but would have to have a skin review as they couldn’t just hand it out, I asked if I could have a skin review and was was sent for review on day 5 but there was no one available to do it!
Skin continued to redden over weekend so I asked for review again on Monday/ day 6 was told no need as the rad team checked my skin every session, was also told that the ‘special’ cream was only a moisturiser! Was also told that if my skin got really bad they could prescribe the cream with silver in that can’t be used during treatment.
I told them I had a new dark raised freckle /mole I had not had prior to treatment and they didn’t ask me to point it out, another similar mark now developing. Supposed to get skin review after today’s session 10/ 15, I didn’t have a skin review prior to treatment starting, my wound had healed nicely but small area became red and weepy earlier this week.
Being made to feel as if I’m making a fuss when I raise any concerns!! I was originally using Aveeno after morning shower, immediately after treatment and before bed, only wearing bra to go out for treatments, shopping so keeping boob cool. I have started to use a cream recommended by a friend in Europe where all radiotherapy patients are given a tube of cream which not only moisturises but heals damaged skin. Surely early action/prevention is better than waiting until someone has nasty weepy rash ?? Don’t really need any answers just wanted to vent 🥴