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Effects of radiotherapy

20 REPLIES 20
CheshireCheese
Member

Re: Effects of radiotherapy

Hi JCJ
I found that having done lots of arm and shoulder exercises made a huge difference to having the rads. If you get your BC side moving well enough you should have no problem at all lying with your arm above your head for a few minutes at a time. Also, when you have rads there will be a support to put your arm in so you keep it in the same position each time, so that will make it easier and more comfortable as well.

I really can't over-emphasise how much difference the exercises can make. All my medical team have been amazed how much movement and flexibility I've retained throughout the whole process, and it's improved circulation, therefore the healing process.

JCJ
Member

Re: Effects of radiotherapy

Nobody, at any point has mentioned exercises to me - apart from on here of course! 🙂 Thanks Cheshirecheese for the link. I've downloaded the booklet and will start right away. Better late than never? It's 5 weeks since my WLE and SNB. I had been flexing the affected shoulder to ease the shooting pains down the upper arm, but when I mentioned them to BC nurse she just said that was normal; everybody got them, just due to the the nerve endings damaged in surgery. It's much better now and I do have almost normal use of that arm now.

I'm not looking forward to the Rads planning session as I found the Xrays, at the nuclear medicine department after the dye was injected - (still got a green area above nipple! 😞 ) - absolutely excruciating lying with both arms above my head with no support for them.

I'll try to get more flexible with the exercises and maybe it wont be so bad.

Guest user
Not applicable

Re: Effects of radiotherapy

Just got back from visit to Onc - says my sore throat is a side effect of rads (more details if anyone is interested on the Starting Rads in March thread).
Mary M

Guest user
Not applicable

Re: Effects of radiotherapy

interesting different experiences here ...I'm having 25 sessions and have been told not to wear a bra....only put cotton or silk next to your skin ..not to use anything on my breast other then 100% natural soap and Almond Oil.
I wasnt given any exercises although I was told I should do exercises ...so I downloaded them from BCC.
I'm getting two arm massages a week as well.
Grumpy you have put me to shame -
I've been concerned about our 104 mile journey but you have 160!!! ...and allegedly (tho i've seen no evidence of it yet) i can claim back the petrol and motorway tolls! Our journey takes minimum 1 hour ..I'll guess yours is longer!
And parking is always available ....and at the clinic for radiotherapy it's free.
Also everything to do with the radiotherapy has been explained to me in French (except the oncologist he speaks english)so I've just read everything up before hand from the BCC site mainly or my Susan Love book and then watched out for words I understood and so nothing so far has been a surprise...I've found that here nobody tells you much voluntarily ...you have to ask questions.I think theres an assumption that either you know whats happening or you dont want to know whats happening.
Still its not too bad ..so far!
Mary M

ChocDrop
Member

Re: Effects of radiotherapy

I'm appreciating the support here, especially today! On the whole, I think I'm coping amazingly well (considering other circumstances too) but today, just went to Sainsbury's, selected some bananas and then, for no apparent reason, started crying and just wanted to have a good cry! Well, whether anyone noticed or not I don't have a clue and not particularly bothered but I couldn't think why I suddenly felt so emotional except that maybe I'm stressing about the appt tomorrow with Oncologist! Stupid, I know but probably not so unusual, eh?

Still, it's an early start for me tomorrow, so won't have time to get too stressed. A very good friend is coming with me, I'll be driving, and then picking my my (X)S-i-law when we get there, as she is so familiar with the hospital and the Oncology Dept already - so is saving me a lot of other stress!

As for parking, well, may have to leave S-i-l in the car, with keys! 😉

Be good to know what the plan is, when the planning session and when it all starts.

Wow, Grumpy, 160 miles every day! That's a lot of petrol/diesel!!! My journey is 30 miles each way, so total 60 miles, plus another 5 miles if I pick my Sil up. So, when I get fed up of the journey, I'll have to think of you!!! 😉

And yes, like you Grumpy, I'm on a pension too! Also, diesel so I'm going to take the opportunity to work out the mpg/mpl during this time - might as well get some other benefits from the travel, eh?

Cheers

Guest user
Not applicable

Re: Effects of radiotherapy

CheshireCheese, thank you so much for the link, better late than never I suppose. I wonder whose job it was to tell me and who failed! I dont think I have any movement problems, but the worst part of the radiotherapy for me has definitely been having my arms in those rests. No problem at all when the sessions were all underway and quite quick,but at the beginning when they took longer to position me, they went from pins and needles to completely dead!!

I didnt have any node involvement, but the machine is set up to cover quite a large area on the left hand side. I get zapped once from the right and then the machine moves to the left and zaps me again, so I think it does cover some of the armpit area. I am taking part in a hospital trial to see if we can carry on using fragrance free deodorant, no side effects yet.

Ill be keeping my tattoos to, although I only have 3. They did tell me before you have an x-ray tell them you have had radiotherapy, but suppose you cant! Hopefully the tattoos would be a clue!

Chocdrop you will be absolutely fine, as 'Grumpy' (love that name) says, its more the incovenience of travelling to the hospital every day and no free tea or coffee for us! Ive begun to feel like part of the furniture and Ill quite miss all the staff after tomorrow, as they have all been so lovely. Let us know how it goes.

Jayne xx

grumpy
Member

Re: Effects of radiotherapy

I had 15 sessions of radio last March. Tattoos, which I knew about, were applied in the planning session where you have your arms up resting on little curved platforms. That's why it's a good idea to do the shoulder exercises so you don't get uncomfortable during treatment.
Boobs looked VERY suntanned and 'spotty', but only after radio had finished, and I used gallons of aqueous cream (Boots, about £5 for a huge tub)to keep skin soft. I still use it as a body moisturiser and to massage all round scars. The suntan faded very quickly, about 6 weeks. The worst bit was peeling skin on nipples, so wore a cotton vest instead of a bra for a week or so.
I've got 10 tattoos and they are tiny dots - my 7 yr old god-daughter saw them in the shower and asked what they were for. I told her they were so the man knew where to shine the special light to make Great Aunt Marj better. She said he should put them in right place next time so she can join them up to make a picture!!
I am keeping the tattoos cos I think of them as badges of survival, not everyone's taste I know.
The tiredness didn't kick in for me for several months - it seems to be different for everyone.
I found the hardest bit the 160 mile round trip each day for 3 weeks, never mind the cost of petrol when you are on a pension.

All the best, it's not too bad at all, and at Rosemere (Preston) we got free teas and coffees.

ChocDrop
Member

Re: Effects of radiotherapy

Thanks for the information, CheshireCheese.
I've just ordered the DVD - might get to be SuperWomen yet ... !!! 😉

Hi Minij, after WLE and SLNBs, I was advised to do arm up above head stretches by Day 3. I just assumed this was 'normal' so I'm sorry you haven't been advised to be moving your arm around. I hope you haven't had problems getting a good range of movement?

I have to say, I didn't find too much restriction in moving, apart from the soreness, of course. However, I have had what I consider to be 'cording' but that seems to be slowly settling now. As for how the radiotherapy affects movement, I have yet to find out. I'm presuming I won't be 'zapped' in axilla as my nodes were clear but I would think it likely that general range of movement will be advised?

So, Minij, you will be finishing your Rads just as I'm starting on that path. Well done, hope you continue to do well.

Take care, all of you

Guest user
Not applicable

Re: Effects of radiotherapy

Radiotherapy departments (well mine anyway) really need to be more communicative as to what is being done and why.

I knew nothing about the 'tattoos' till I was actually lying on the bed at the 'planning session' 😞

CheshireCheese
Member

Re: Effects of radiotherapy

Guest user
Not applicable

Re: Effects of radiotherapy

Can I ask, does everyone have exercises to do? I assumed I wasnt given any as I didnt have any lymph nodes taken, but the nurse asked me at the end of the first week if I was doing my exercises and I said 'I dont have any!'

Im nearing the end now with 2 to go and I just wondered when anyone had their first bath? I usually shower, but I cant wait to lay in a bath again!

Jayne xx

Guest user
Not applicable

Re: Effects of radiotherapy

I am 6 months post now and do have a large area of discolouration in a square over the area where my breast was. The tattoos are not noticeable at all but I am having a lot of pain in my ribs which doc says he thinks is radiation damage, but which i must check out. I also developed Teitzes disease which is an inflammation of the cartlidge between ribs, yes, if theres a side effect I will get it!! That said nothing is too bad, just combined, a bit of a pain.

tillybob
Member

Re: Effects of radiotherapy

I have 5 tattoos but they are tiny, look like blackheads as Supertrouper said, my rads finished 4 months ago my skin is tanned looking over the treatment area, I have also been left with a frozen shoulder due to rads , but that is un common I think. But it is a very effactive treatment so worth all the SEs.

CheshireCheese
Member

Re: Effects of radiotherapy

One reason they use permanent tattoos is so it identifies where you have had radiotherapy. Apparently you musn't have rads twice in the same place, so the tattoos help avoid that possibility.
As for long term effects, I'm now 18 months on from rads and the stiffness and tightness in the breast tissue that started at about 3 or 4 months has finally just about disappeared. I have done at least daily exercises throughout, which has probably helped, and seen a physio when it was uncomfortable.

modurham
Member

Re: Effects of radiotherapy

Hello everyone. I have had 4 tattoes, one to the left and right of the breast and one at the top and bottom of the cleveage. They are very fine, in fact they have to remark one wth a pen sometime as radiologist struggles to see it. However, if we want them removed we can have them lasered on the NHS. I think most people probably don't bother because they are so small. I am deliberating at the moment, will ask my daughter's view when she next comes!

Kindensurprise
Member

Re: Effects of radiotherapy

Hi Moya

I have 2 tattoos, one on the breastbone I honestly never notice, and it is the size of a pinhead so no one else notices either, and th other is under breast, so I've never seen it!

I'm 4 years on, and the long term effects for me are that sometimes the breast swells up and gets red, hot and sore - this was most acute 6-8mths after treatment - now it is much less so. My scar is just below my nipple, so it was involved in all 30 rads and remains white rather than pink, and all sensation has gone, probably forever now, but this is a tiny price to pay!

Good luck
Kinden
x

DJ007
Member

Re: Effects of radiotherapy

Hi Moya

There are a few long term effects that you might get that are a bit more worrying.
- Some people find that their breast hardens and/or shrinks
- It may thin your ribs and you may experience pain in your ribs for some time afterwards
- It may scar your lung - normally you compensate fot this OK but it will show up on any future x-ray

Good job it's so good at killing cancer cells!
Dx

supertrouper
Member

Re: Effects of radiotherapy

I am 17 days past my last Rads. I had 5 tattoos and the one on my breastbone looks like a big blackhead. My skin is a very dark red and looks like it is about to peel - I am hoping there will be no permanent skin discolouration or scaring - but you never know!

Guest user
Not applicable

Re: Effects of radiotherapy

I have 3 tattoos. One on the breast bone and then one each on the left and right hand side of my body. Although they are blue, I think they look like tiny blackheads! No one will ever know if you dont tell them.

Ive just started my third week, no change of colour yet.

Jayne x

AnnieK68
Member

Re: Effects of radiotherapy

Hi Moya,

I can only comment on my rads experience - I had a lump just under my armpit. I had three tattoos - the largest is just where my cleavage is, close to my breast bone, one mid way in line with my armpit (it's tiny, I can just make it out) and one below where my lump was removed. To be honest with a bra on you can't tell at all, the ink is blue but they are so small, you can barely tell!

Good luck with your rads

Axx

Moya
Member

Effects of radiotherapy

Am about to start rads and was wondering about permanent effects. I find the information sheets they give you downplay thigs quite a lot. I was surprised that my tattoos will be visible in a costume or summer top, I stupidly thought they would put them lower down. Was told it would look like a mole - but they are blue!!

Also see on other threads that people are left with permanent discolouring - is this over a wider area that the breast only?

Thanks
Moya xx