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Ongoing effects after radiotherapy

21 REPLIES 21

Re: Ongoing effects after radiotherapy

Thanks Ali,
Yeah I've been very emotional too - but I also have anxiety and PTSD (which wasn't helped by having to strip to the waist all the time throughout this!!) so I wasn't sure what my particularly emotional state was down to.
Might try to phone for a practice nurse appointment tomorrow - or today actually now - as it's looking a bit yellow on the dressing and it's coming through the dressing. Very sore.
I hope you continue not to be tired or sore! Thanks!!

Re: Ongoing effects after radiotherapy

I am just a week after finishing now Eli and my skin is not too bad. I've been using hydrocortisone for the itch and washing with aquamax. I am not really tired either but I am waiting to see if that happens next week. Emotionally though I am all 9ver the places. Feeling frustrated with everyone, angry and upset! I am hoping it passes. Hope you start to feel better soon too x

Re: Ongoing effects after radiotherapy

Hi
I'm 2.5 weeks post 15 rads for high grade DCIS. Feeling so very tired but also my skin is still sore and weepy? Has anyone else had this?
Thanks!!

Re: Ongoing effects after radiotherapy

Hi JF I have only just finished rads yesterday so will have to wait and see how I am but I am hoping to return to work in about 3 weeks! My skin has developed a prickly heat type of rash 3 days before the end of treatment but that's all upto now. There is a bad virus doing the rounds though so do take care xxx

Re: Ongoing effects after radiotherapy

Hi,

 

Hope you don't mind me jumping in, but am feeling a bit rubbish almost three weeks post radio, with a tight feeling inside like I can't breathe quite properly and like someone is standing on my chest, not to mention fatigue.  I saw you had a lung problem and wondered if this might have happened to me.  I wondered how you found out.  Did they x ray you to see this?  Will it get better- Im really worried about it but feel every time I mentuon things they just think Im anxious! Can you help at all.

 

Thank you Katykookabura, and I hope you are doing much better xx

Re: Ongoing effects after radiotherapy

I'm 10 days on from last session of 15 rads which followed chemo and surgery. Like yup my skin has not been too bad but I've suffered from extreme fatigue. I've had nausea, slight dizziness and noticed very low body temperature when I've been feeling ill. Also just completed a course of antibiotics for a urinary infection so my immune system must be low. Like you, often can't sleep and if I do wake up just as exhausted. It's oddly reassuring to find someone else who feels like this.

Re: Ongoing effects after radiotherapy

Hi I finished my rads 8 days ago and my breast is sooo sore swollen hot and very itchy. I have been told to stop the cream from the fridge and I am now using diprobase and antihistamines. Hopefully this will work .
Good luck to everyone. Take care x x
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Re: Ongoing effects after radiotherapy

Hi there well RADS over now and felt fine but boob is now so sore, swollen and hot can't stand anything against it. Have been using the cream constantly from the fridge trying to keep it exposed when I can. Don't worry not whilst out it's true it gets worse before it gets better. Thought I could go back to work but as Manager who travels all over the country don't think I can. I feel like a fraud when it Cools down PHEW good luck to everyone going through this and other treatments x x x

Re: Ongoing effects after radiotherapy

Hi Sukimk, sorry you have not had the responses you hoped for. I had a few weeks away from the site and just come back these past few days. How are you doing now? Grade 3 and no spread? Have you started your rad treatment ? What medication they giving you?.
I had a grade two Mucinous oestrogen hungry tumour . Type is rare I was told and only one other has come back to me with similar on this site. Had two lots of surgery to get a clear margin and then 15 rad treatments. Now on Anastrozole. It is a scary journey and you are best to stick to this site or the MacMillan one and not Google it as some scary stuff out there.
Let me know how you are doing and maybe can give you some tips on how to manage things. I have learnt a lot from the other ladies on this site. Take care , Katy.

Re: Ongoing effects after radiotherapy

Sukimk - Sorry nobody has replied. Threads in this forum are very difficult to keep track of so maybe, like me, they just didn't see your post.

 

I hope your RT went OK - wasn't it starting Thu?  If I were you I wouldn't wait for your Occupational Health to contact you but call them yourself and also keep in touch with your management at work to let them know what's going on. Don't try to go back until you feel ready.

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Re: Ongoing effects after radiotherapy

I have to say thanks for no one responding to me we are all in a terrible boat that we didn't want to be on can someone please ensure they give a heart to say something at least in support x
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Re: Ongoing effects after radiotherapy

Hi I am starting 15 Rads on Thursday. Work have been very good just telling me to get better and come back when ready. It was me who contacted my Line Manager over a week ago and was told OH would make an appointment with me.

What should I say, they have not been I touch yet' think they are studying what to do themselves. I won't know how I feel as the weeks go by so really need to listen to my body.

Any help or advice would be gratefully received had DCIS grade 3 and lumpectomy and nodes removed end of Aug, all clear

Thanks Susan

Re: Ongoing effects after radiotherapy

Hi Katherine, I'm having 15 rad to collarbone, have had 13 so far and no problems so far... Good luck xx
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Re: Ongoing effects after radiotherapy

Hi All

 

I am due to start rads on the 30th September 25 sessions, consultant rang me yesterday and said he forgot to mention that i was to have rads to my collar bone as well, has any one else had to have this as well? bit worried now.

good luck to all of you going through this,

katherine x

Re: Ongoing effects after radiotherapy

Hi Nannie

Best of luck with your meeting. Sounds like you also have a supportive employer like myself.

One of my worries is that as I work in FE this years massive drop in funding has resulted in many redundancies going on at present. I knew when I went off it was going to be happening but didn't anticipate the scale of it. My own boss is on 30 day redundancy notice , so obviously I am worried for myself. But also when I do go back on 7th Oct she will have gone! She has kept my dept running in my absence and he not be there to hand over. This has made me feel pressured to go back sooner but HR have been very reassuring about it and prefer me to return when I am 100% better. How this translates into reality when I do go back- who knows.? Worrying times

Best wishes on your return
JF

Re: Ongoing effects after radiotherapy

Hi JF I have a meeting today about phased return starting 01/10/13 I feel I need to go back and am only going to be doing 2 days a week for 4 weeks. I know I'm ready my underarm is sore but I will be sitting on a computer and mostly catching up after 7 months off.
Marie

Re: Ongoing effects after radiotherapy

Hi All

Well I went into work today for my meeting. My medical certificate doesn't end until 6th Oct so after getting advice from my GP surgery have decided to let this run out and plan my phased return to start after that. They are very accommodating at work so I only need to go back part time for a few weeks until I feel ready for full time. Having said that they are fully prepared for me to need more time off if I'm not ready. So we will see how I am. I will rest up and hopefully will be better.

Yes Janey, you are right . I will know when I'm ready and it's just not yet

Best wishes to all
JF

Re: Ongoing effects after radiotherapy

JF, if you can't even think about going back to work then don't. I think everyone on these discussion groups has learnt the hard way to listen to their bodies - and hearts. In our digital always-connected world we've got away from using our instincts and our gut feelings. These months of forced inactivity have allowed those inner voices to come back. So listen to them!!! Then you'll know when it's time to think and time to do.

 

Jane x

Re: Ongoing effects after radiotherapy

Thank you for reading my post and taking time to reply. It really helps to hear others reassure you that it's not just you.

Yes I can go back on a phased return. Occ Health recommended going back on 50% of my hours (about 19 hours a week) for about 4 weeks building up to full time over about 8 weeks. My job also allows me to work from home. So really I can't complain..

Thing is though, because I feel rubbish at the moment, I don't even want to think about it, perhaps give myself another couple of weeks. Trouble is its hard to know whether you are just making excuses and putting it off.

I will see how I feel tomorrow, go to my meeting and see what they come up with.


JF

Re: Ongoing effects after radiotherapy

Hi JF , I think it depends on the individual as some ladies have said that rad treatment was a breeze.
It was not for me as I found it traumatic getting on that machine each day as it really hits you that you have cancer. I could feel mine especially when they put the little nodes on you to measure the dose. In the end they had to quickly measure the dose switch machine off take the nodes off then switch machine on again to finish treatment.
The tiredness thing was weird as it suddenly came over me and I would feel incredibly weak for awhile then it passed off. I finished on April 16 th and I felt tired and washed out well into early June then it gradually gets better.
I think the whole trauma of having the cancer, getting it removed , the impact on the family etc, etc, catches
Up with you and that what makes you feel rubbish. Everything happens o quickly and from the biopsy until I was discharged from oncology was nearly six months of hell ! . Physically your body heals in a certain time but mentally it takes longer I think?. Anyway you must remember your immune system is working overtime as all the cells in your beast have been killed and the good ones are now replacing themselves. I had problems as the rad treatment touched my lungs causing me to build up fluid and become breathless then I got an infection and it took three weeks of antibiotics to sort it. I can honestly say I am only just feeling more i used to before the cancer diagnosis only in last couple of weeks. I keep away from people with colds or any sort of 'bugs' as best I can. Got slightly OTT about hand hygiene of everyone coming into the house. My hubby washes his hands straight away as he works with older people . I am fed up feeling ill but hopefully turned corner now. Don't be pressurised into going back to work before you are ready .
I am going to,ask if I can have the flu vaccine as feel my immune system is completely had it!. Take care , Katy.

Re: Ongoing effects after radiotherapy

Ah yes, just when you think you're winning ...! I was forewarned by a friend who'd had radiotherapy that the effects really hit big time about 10-14 days after your last session. He had it for colo-rectal cancer, but he was absolutely right. It got worse for a few days, then you do start to come back up again, promise! I had far fewer than you, only 15, but as the effects are cumulative it doesn't sound surprising that it's affecting you more.

 

As to the how long does it last question? Looking on other breast cancer sites the answer seems to be 'as long as it takes'. You're not a wimp if you don't feel ready to go back to work just yet. I think that even thinking about it sounds like pushing it. Does your work have a part-time capacity? But please, please, be kind to yourself. Don't beat yourself up if you don't feel you can make 23rd. It sounds awfully ambitious to me!!

 

Don't ever forget that radiation is a very powerful weapon, but because we just lie under a whirring machine for a few minutes we lose sight of that. It's killing cells, which is a good thing as it's very targeted, but our bodies need to get over the 'hey lady, what the heck do you think you're doing to me?' reaction, and on with the 'OK, let me catch my breath and then get back to building you back up again. Please don't do that again!' reaction.

 

I'm 5 weeks after finishing, still needing an afternoon lie-down half the time, but feeling better everyday. But I'm mostly retired, what work I do is at home on the computer, and I'm old enough to have learnt that my energy is not boundless!

 

Hugs

Jane x

Ongoing effects after radiotherapy

Hi All

I am almost 2 weeks on from my last of 25 rad treatments. I was **bleep** a hoop for the first 3 weeks thinking that I had got away with any side effects. How deluded I was! Although luckily my skin has been ok apart from feeling a bit sore and swollen. However for the last 2 weeks or so I have felt so tired and below par. As has been said before, this fatigued feeling isn't something that you can sleep away, in fact I did try to nap at times but sleep wouldn't come. The other thing is that I have absolutely ached all over all the time and at times feel like my head is in a vice. I raised it with the ladies in the clinic but they thought maybe it was a bit of a virus.

As I said, I constantly feel below par ( best way I can describe it) and wonder if this is till the effects working through. I worry as tomorrow I have a return to work meeting with a view to returning on 23rd. Today I really don't feel up to it. When I originally planned the meeting way back, I gave myself 3 weeks after rads to recover before going back to work. Now I think I overestimated my recovery time. Not really sure what to do.

What sort of effects have other people suffered apart from sore skin etc? How have you coped? How long did it go on for? How soon did you return to work after rads? Some people will say that they worked through rads, but in my case I was recovering from lumpectomy with reconstruction on both sides so its taken a while.

Thanks. Best wishes to all

JF