Hi all I am now starting radiotherapy on 5th Jan for 25 sessions. Havent heard much about it. Have to attend a simulator app to mark me for laser then treatment starts 7th onwards. Ten minute apps and i have to travel to Edinburgh which is 40 miles away every time!!!
I keep hearing about skin being affected. I have hyper sensitive skin and reacted recently to Mepore dressings which are super hyper allergenic yet i still came out in blisters etc… i am really worried bout the radio burning me.
I have already had to stop chemo due to horrendous side effects and am worried the radio is going to go same way. Nurse keeps saying they will try chemo again but if I end up as ill again then it will have to stop.
My cancer was grade 3, stage 5 so it scares the life out of me that they wont treat me further as its highly likely to come back.
I have three young children and am not ready to just give in to this. Surely i can insist on treatment???
Sorry to hear what you are going through and your worries. Could I suggest that on Monday when the helpline re-opens that you give them a ring and have a chat with one of the breast care nurses here, as they’re here to support you through this. Lines are open Mon - Fri 9am - 5pm and Sat 9am - 2pm. Calls are free, 0808 800 6000.
Lyn, please try not to panic. I have sensitive skin too and I was surprised by how well my skin held up. It was pink, itchy and a bit sore, but not as bad as I had imagined.
From other people’s experiences too, I can say that sensitivity does not seem to mean that you will suffer badly from radiotherapy. The radiotherapy departments are also very supportive from what I can see, giving you the gels, patches or whatever you need if you need them.
Fortunately i was okay during chemo and rads so can’t really offer any advice but can send you cyber hugs.
Please try not to worry. You’ve got to give it a go not only for you but for your kids. It might be worth speaking to the BCN to see if there is any after care ointment you can use to reduce the effects of radiotherapy.
Hi Signet, I wish I could ease your mind. I was grade 2 in Nov 2006 had 6 chemos instead of planned 8 . Ended up with pancreatitis, was hospitalised.
I had WLE and 7 nodes removed 5 wks of rads, yes I did burn and my skin is hypersensitive even had burns and blisters from the op dressings , do not know what they were called but they were like clingfilm.
Yes we are all so different Please, Please trust your ONC and nurses , I was terrified when they stopped my chemo, was convinced BC would come back. Aloe vera from fridge was godsend . I am still here large as life two years on. On anti depressants and Tamoxifen , all the weight I lost on chemo as gone back on and more… BUT I am bloody well ALIVE, if you burn they will heal. Just trust , trust , trust.
Sending you all my love , let me know how it goes??? ONE DAY AT A TIME sweetheart.
Sorry you are having this problem Signet but I am also pleased as it means that I am not the only one with super sensitive skin. I was alergic to the Mepore dressing, what a mess. I have a connective tissue problem and they are not sure my skin will hold up with the rads and if it doesnt they have told me it will be a mastectomy. Aint life a bitch at times?
By the way, where are you from, I am 70 miles away from both Edinburgh and Glasgow and going to have rads in Glasgow
Please please don’t be too scared about rads. I had 20 and 5 booster sessions, and my skin was absolutely fine. I think you sometimes hear too many horror stories and not enough of the positive ones.
Are you having your rads at the Western in Edinburgh? That’s where I went and the staff there were FANTASTIC! Nothing was ever too much trouble and they will listen to any concerns you have. Also, don’t worry about the treatment planning session - sounds much worse than it is.
Just think about your three little ones - they will get you through this! My baby was nine months old when I was diagnosed and he has been truly amazing.
I have very very sensative skin (can’t even use loo paper with aloe vera without a reaction!)and reacted to all the dressings I’ve had whilst having treatment - I’m allergic to all sorts far too many things to list. However I used aqueous cream as soon as I was told I’d be having radiotherapy (avoiding scars) as advised by my BCN with simple products in the shower. I had 3 weeks radiotherapy plus 5 booster sessions. My nipple started to tickle within 3 days and by the end of the first week my skin was red but nothing was painful. At the end of 3 weeks I had raised bumps that started to bleed (only as much blood as a graze) and was advised to use nothing on my skin anymore just water, pat dry with a clean towel, keep open to the air(interesting for the florist next door!) and wear loose natural fabrics (cheap crop cotton tops from Asda worked although no support). After just a couple of days everything started to settle apart from a flashing sore when touched nipple. I’m now 4 weeks on from finishing. My nipple has scabbed and peeled a couple of times and my boob looks like it’s had a fortnight in the sun with an especially dark patch where the booster was BUT it’s all settling. It didn’t make me scream in pain and for the first 3 weeks apart from the tickle I was ok.
Please try not to worry, the people (radiotherapists and nurses) on your Linac will take great care of you (mine, at Southampton, were all fantastic) and will advise if they see the start of anything and they should ask each day when you go how you’re feeling - tell them! Also tell the nurse/oncologist when you go for your simmulator then they can give you advice.
Hi Lynn,
Try not to worry about things, I guess by now you have had your 1st treatment, hope it wasnt too terrifying for you, Im hating mine and still got 3 more to go!! snowed in today so cant get to hospital at all!!
xxmumszyxx
Thanks firstly to Jo the facilitator and I appreciate you giving me the helpline number x
To all you other lovely ladies, i went today to the Western General in Edinburgh and was a nervous wreck. My ONC is same age and lovely and i really trust her. Told her my fears and that i felt i was being pushed down the palliative care route and she reassured me not at all. They are just concerned at how ill i have been and need my body to rest to cope with whats ahead.
Had the simulator today and it wasnt near as bad as i feared. I had to take my eldest son ben with me as the schools were closed and he helped to ease the anxiety. I asked about skin reactions but they said not to even worry about it until/if it happens.
Weather is atrocious and the journey was 2 hours each way. i doubt i will make it thru on Thurs and Fri as the A68 Soutra route which is the safest was closed earlier tonight and the snow is still falling thick and fast.
Biker Babe - I live in Melrose in the Scottish Borders so Ed is normally a quick zip up the bypass on a good day but in this weather its horrendous. Where are you? My sister lives in Dunblane and i have lots of family in Glasgow.
But honestly all of you i find this forum so supportive and questions i feel silly about asking i can ask here.
thank you all for your kindness and support despite your own battles x
Pleased to hear your mind has been put to rest, worrying is not good for you (I know that because I do it all the time! lol). I live in Lockerbie and at first they said it was Glasgow and then after the second op they said I could have the choice but by that time I had already got my head around going to Glasgow. Its 6 of one and half dozen of the other with distance.
Hi Signet,
I also started my radiotherapy on the 5th at the Western. I was also very scared. I’ve got a feeling I might have seen you, because I think we were in the same waiting area. I was sitting by the wall, with Mark, my other half. I have to go for my appointment at 13.20 each day - what time is yours? Perhaps we can say hello to each other, if we are there at the same time. I live in Dunbar, so again, it’s a bit of a journey, especially with this weather.
Hope you are doing OK anyway.
Isobel.
Hi Isobel,you werent the poor souls that were sleeping over at the wall??? I said to Gordon how awful i felt for you as you were there for ages!!! My apps are around 11am so may not see each other but def love to keep in touch. We sat on the sofa prob opposite to you and i sprayed water all over myself at machine by mistake!!! Lol. I felt a right idiot. Ben was bored and him and Gordon left to get snacks.
Wow thats so nice to hear from someone else going there. I will be there every day as of Thursday coming so anytime you want to say hi let me know and i can drive myself and take time to have a coffee. I am using Macmillan transport but am perfectly able to drive myself. Its just childcare thats a prob. So if you fancy a natter i will drive up and also visit the maggie centre same day xxxx
Yes Lynn we were! We finally got away at 5pm - they had lost my notes! Happens I guess! On Thursday, I have changed my appointment to 11.30 so if you want to hang around for a bit we can meet up. I have to come with Mark, as I am not allowed to drive yet, so he will be there too, if that’s alright. Would be nice to meet you.
Take care
Isobel
Hiya, I will see you Thurs!!! My first actual treatment. Getting patient transport with a man from Kelso and we are both around 11. If i dont recognise you give me a nudge. But as you prob noticed other day I am pretty bubbly and find waiting areas a bit scary - i am too noisy lol xxx
Bless you waiting so long. Your other half was out for the count and no wonder!!! I found it comical that staff use the same water machine and toilets as patients. Good old NHS!!!
Isobel I meant to say that my partners aunt lives in Dunbar. Not from there originally but she is there now. We love the animal farm there and my local toddler group have day trips there x its brill.