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New to Radiotherapy

24 REPLIES 24
Island_gal
Member

Re: New to Radiotherapy

Hi Girls, So, one week post rads tomorrow- what fun I have has this week! My skin started to weep and then split under my breast and said breast resembles a traffic cone! Today I have started to get a sort of spotty rough rash covering ,most of the breast area. I am told all of this is quite usual in some women, although other ladies might not have such severe reactions. I have felt so tired and quite depressed. I know this will all improve in a couple of weeks. If anyone else is going through this, I would say do talk to your BCC nurse- they have seen it all before and are very reassuring. I did find taking that an antihistamine tablet helped the itching. Intrasite Gel seems to be helping the split skin - applied and covered with a soft cotton dressing. Sorry to be a moaning Minnie, but it is great to be able to get it off my chest (silly pun!) good luck to all of you and thanks for being there . Jenny x
Guest user
Not applicable

Re: New to Radiotherapy

Post rad therapy 2 weeks today! 🙂 the 15 daily appointments whilst undignified: agreed a piece of paper towel for modesty and undressing in the same room is a challenge. The most time s the positioning but the staff are helpful and explain or answer any questions. The last few days as explained I have been very tired and lethargic but I am taking things a day at a time I thought I would be back at work !! Unfortunately my surgical wound has broken down a little and despite careful care and treatment became infected a couple of days ago but have antibiotics now not sure if the hot flushes was tamoxifen or high temperatures !!!! Always need a sense of humour. Still using aqueous cream for unaffected areas which is great. Wish you all well x
cassie1
Member

Re: New to Radiotherapy

I am in the middle of chemotherapy and my ONC has told me about the fast track radiotherapy, (5 sessions instead of 15) have any of you ladies taken part in this?
Jayne
Island_gal
Member

Re: New to Radiotherapy

Hi Katy, I am sorry you have had such a rotten time with the after effects of the rads- seems to me that most of the problems appear in the weeks after treatment finishes! I am on no 11 of 15 - will be setting off shortly on the 62 mile round trip!
although I will be glad when the treatment finishes, at the moment I feel I a m doing something positive and don't have too much time to project. I am doing the breath holding technique, as my lesion was in my left breast - have found it a bit tricky the last week, as I caught a bad cough and cold - so have been quite congested and unable to breathe as well as usual.
like you, I am not happy in cold weather, and have been lucky enough to spend winters in the sun for the last few years.
That was a setback for me, to be told to stay out of the sun or at least a year! Like you I have two small grandsons, who I have not been able to spend much time with since my diagnosis- what with surgeries, recoveries and hospital journeys. I am sure we all wonder if our lives will ever be 'normal' again.
I will certainly take your advice and try to pace myself, I too, don't want to let my routines go, and have exhausted myself trying to keep up with the garden, washing, ironing and cooking I have a really large medieval house which takes a lot of time to keep in order.
Take care Katy, please keep posting, I hope you will feel better soon, get lots of rest.
Jennyx
Katykookabura
Member

Re: New to Radiotherapy

Hi everyone, I had a primary tumour , two WLE's and SNB then 15 rads over 15days . I was fine until about tenth day when I started to get this sudden draining sensation like my batteries had been pulled out. It would last for about an hour and I just could do nothing. I quickly learnt to pace myself and I had driven myself until last three treatments but then my hubby was concerned I was too tired to concentrate on the road so he took me.
i found getting on the machine quite daunting as it really hit home I had the big C . Silly I know but each stage of treatment seems to have done that. Anyway my skin was pretty good as I am fair with freckles but got very red and hot and developed ' prickly heat ' rash which aloe vera worked like magic!. I had used aqueous before and during treatment and I bought some pretty vest tops with extra support and I used them for treatment time as you can just slip them down without standing undressing in front off the radiographers ( I had two men plus one woman first time) and that was better. No modesty vests just a bit of blue paper they put over me after I had been measured up.
i did develop a sore split area after treatment under my breast which my GP practice nurse diagnosed as a burn and she prescribed some really good burn plasters on prescription which healed it within five days. That was a bit miserable as very sore so watch out for that and don't suffer it get yourselves along and see GP or your practice nurse.
The tiredness changed from a draining sensation to just a feeling of being whacked and still happens now( finished 16.4.13.)
Unfortunately I have had a reaction to the radiotherapy which is a rarer one and I developed a wheeze and cough in May and had one course of steroids that worked but it has come back. Apparently time will heal it ( hopefully). I probably did too much and tried to get back to 'normal' too quickly so once again pace yourselves. The other tip is keep away from anyone with an infection as your immune system will be weak for some time so my GP has told me . Just had sinus infection so had course of antibiotics. It was hard saying no to having my grandson sometimes when he had a cold or cough but had to look after myself.
Hope this is helpful and has not depressed anyone? Everyone has different reactions I but felt useful to share what could happen. Good luck everyone on your road to recovery . Best wishes. Katy.
Jan_mints
Member

Re: New to Radiotherapy

Hi to all you Bap zappers, hope everyone is doing ok?

I finished my rads on 31 July and was advised by my oncologist towards the end of my treatment that I would feel rotten for up to 2 weeks afterwards.
This has proved to be the case, I did feel so tired at the end and last week my skin went all lumpy and I developed small incredibly itchy blisters. They have calmed down now and I am still continuing with my skin care. The tiredness has eased now but I am still experiencing a few shooting pains which aren't too bad.
I have to see my oncologist again on 10th September, the surgeon in November and then, I think other than my regular mamograms, I will be done.
I have found the weekly day care sessions at my local hospice invaluable and meeting other women with breat cancer has helped me over the last few weeks. I also have weekly psychotherapy sessions and aromatherapy reflexology at the hospice.

I am now starting to think about returning to work, which was unthinkable a few weeks ago.

Good luck everyone, take care,
Jan x
Trisha_51
Member

Re: New to Radiotherapy

Hi everyone, I finished rads in April and like you, felt 'lost' at the end of my treatment and found it to be a scary place to be for a while. My BC nurse said it's like being in no man's land, she's right! However I can assure you it does get better and most days I'm fine but I do have the odd wobble and occasional meltdown ( came over all tearful in supermarket with OH the other day, still no idea why). I'm not the same person I was last year, but I'm getting used to the 'new' me. This cancer journey is not easy but we'll get there in the end. Best wishes to you all, Pat x
Island_gal
Member

Re: New to Radiotherapy

Hello Judith, thank you for your reply. I had been so looking forward to this weekend 'off', but not suprisingly, I have jjust not managed to do anything of any substance! Just moped about and stayed in my nightie all day! I know what I would feel better if I achieved something today, but seem to have no energy! Feeling quite sore and swollen, and don't want to wear clothes.
i shall certainly try to find the book you mentioned. I did find a support group that is quite close to where I live,so I will make an effort to go along there when treatment finishes. Somehow it is difficult to imagine that I will ever get my life back, or feel safe again. I hope you will soon feel stronger Judith, take care of yourself and get lots of rest. I am so grateful for any tips on how to proceed. Thank you, and wishing you a quick return to good health.
jenny x
Guest user
Not applicable

Re: New to Radiotherapy

Hi Islandgal. I have recently, 2 weeks ago ,completed 25 sessions of rads following WLE in late April. I can echo your concerns , it is quite unnerving when you are no longer visiting the hospital and all sorts of feelings rear their heads. I came across a book in the library of my local Haven [breast cancer support centre] and I found it helpful reading,especially to know what I was feling was "normal" and to be expected. It is not specifically for breast cancer but does answer the questions. Title is -The Cancer Survivor's companion - practical ways to cope with your feelings after cancer. Dr Frances Goodhart and Lucy Atkins. The effects do last for at least two weeks after the end of treatment[tgat's where I am now still feel very tired some days ,particularly today, and skin still much more comfortable when not covered ,hence braless as often as practical and loose blouses. Good wishes for the final week
Judith
sunflowerfan
Member

Re: New to Radiotherapy

Hi Mac123 - I shared your concerns and no I don't think they're silly at all. But I went for my rad planning appointment last Wed - they did the "randomising" as part of the clinical trial, and have put me in the control group. So after all my concerns (like you) about the more intensive but shorter radiotherapy, it now appears I'll be having the conventional 3 weeks then a further week's booster. I too am glad to have the chance to take part in this clinical trial, in the hope that it will help in some small way, even though I shall not now be doing the fast treatment.
All the best to you all, love Chris x
Island_gal
Member

Re: New to Radiotherapy

Thank you for this- it is really helpful reading these posts, and seeing that there is life after cancer.
It seems to be about one's mindset, just taking it one day at a time, and trying to be kind to oneself.
another session finished today, now the weekend off- 10 down, and 5 to go! I am told to expect the two
weeks after treatment finishes might be difficult, after the intensive activity of having to travel back and
forth to hospital, suddenly it all stops and it can be quite frightening. Who is holding my hand now?
i guess life will slowly return to some normality and the terror will subside. I have been advised to join
a 'moving forward ' support group following the end of my treatment. It's anyone else going through this
from the Reigate area? Thank you everyone for your posts and courage.
paged
Member

Re: New to Radiotherapy

Hello Alipalli and islandgal,
I have had all my surgery and radiotherapy at St James and have found all the staff to be wonderful at every stage. The radiotherapy can feel time consuming, but is a very effective treatment. The radiologists were all very approachable and reasuring. They are incredibly efficient and will check your wife's skin for signs of reaction at every stage. I also saw the oncologist and radiotherapy nurse at stages through the radiotherapy who also checked on progress. As stated earlier, keeping the aqeous cream in the fridge is certainly helpful! I am having some discomfort now, a week after end of treatment, but I was told this may be the case. Good luck.
islandgal - Good luck with the rest of your radiotherapy. I am sure it is quite normal to become very absorbed by it all. It sounds as though we were in a very similar position re: diagnosis. I have two young children to keep me occupied and take my mind of things which has been helpful, if a little draining!
Island_gal
Member

Re: New to Radiotherapy

This is my first post on this site. I was diagnosed in June with Early stage breast cancer- following 2x WLE's and sentinel node biopsy, I am now undergoing Radiotherapy at St Luke's in Guildford. 9 rads down and 6 to go. How do I feel? Lucky it was caught early, frightened of the future(will it return), isolated, although I have masses of family support- I feel like I am outside a goldfish bowl looking in on life! i guess I am beginning to feel tired and am quite sore- none of this is the problem- the problem is my head, over thinking everything, reading obsessively about breast cancer, and generally feeling like a wimp. Reading the posts on this site, I am astounded by the bravery and courage of the ladies who are going through really bad treatments. I know I am lucky to have escaped so lightly, but I am finding it very hard to get my head around all of this. thank you all for your great courage, I have taken so much comfort from you all.
Guest user
Not applicable

Re: New to Radiotherapy

Hi, I start rads in September and am also doing the Fast trial, My BC was caught so early and I feel I have been very lucky. Doing the trial as I also feel that I am giving something back and help future research. I will be having 5 x 18 mins sessions, so hope I can stay still for that long. My only concern now is , will I burn quicker? Sure we only think of the questions after we get home from the hospital appts!
Mac123
Member

Re: New to Radiotherapy

Hi Sunflowerfan
I am to start rads early September and have also been offered a trial very similiar to yours. The one I've been offered is called the FAST trial, giving shorter rads over 1 or 2 weeks instead of the conventional 3 weeks. I have read all the information but am very unsure. I'm concerned that if I take part in the trial and the cancer retutrns, I may think its because I didn't have the conventional 3 weeks treatment. May sound a bit silly but thats my worry!
Guest user
Not applicable

Re: New to Radiotherapy

Hi Trisha,
Thank you for your reply. That puts my mind at rest as i was panicking a little bit and needed to plan a few things etc.Which i know is difficult on this breast cancer journey! l'll try and stop being impatient! All the best to you,, xx
Trisha_51
Member

Re: New to Radiotherapy

Hi Debbie, I doubt very much that you've been forgotten. When you start rads depends (a) how well your wound has healed (b) how busy your radiotherapy dept is, although I know the ideal is 30 days after the op. I had my WLE and SNB on Jan 21st and didn't start rads until March 14th even though my wound had healed beautifully, the radiotherapy dept at St James in Leeds was just soooo busy as are many others throughout the country. There are a lot of us about with the big C, regrettably it's not a very exclusive club! All the best for when you do start your rads, Pat x
Guest user
Not applicable

Re: New to Radiotherapy

Hi everyone. l had my lumpectomy and snb on the 12th of july and am waiting to hear when i am starting radiotherapy. l thought that we are supposed to start before 30 days after the op. ls that right? That will be next week! l'm starting to worry that i've been forgotten! x
sunflowerfan
Member

Re: New to Radiotherapy

Hi Alipalli, Pat, Jan and Jlr, firstly many thanks for comments on this part of the site - very helpful to me too as am shortly to start rads.
I've been very lucky - WLE of lobular invasive BC and SNB 10th July and results showed clear margins and no spread to nodes - went to my appointment Wed to discuss radiotherapy and was given chance to take part in clinical trial to receive 5 sessions over just 5 days instead of the normal 15 sessions over 3 weeks. (I think this means it will be a higher dose over the 5 sessions?) I will also need a further week as a "booster" to the exact area of the excision, but all the details I've been given were clearly laid out and seem to suggest the side effects should not prove any worse with this new trial method than with normal 15 sessions. Has anyone else heard of or signed up to, this clinical trial? - they have been so fantastic at the hospital with all my treatment so far that I am glad if I can, in some small way, help with research.
So I phoned the hospital the next day after I'd read all the info, and agreed to take part. I was then surprised to receive a call later the same day with my appointment for the CT planning appointment next Wed 7th Aug. Having read all of your helpful descriptions of what happens at this planning appointment, i'm now feeling far less nervous about this next step - so thank you all! I too had not been too sure what the CT scan would involve.
All the best to you all and hope you're all doing really well, love Chris x
Trisha_51
Member

Re: New to Radiotherapy

Hi Alipalli, glad your wife's rads planning session went well. The rads sessions themselves are over very quickly. From the time you are called from the waiting room to returning there to your partner takes less than 10 minutes and that includes time for changing! If things are the same as when I went in March the first session was the longest as one of the radiographers takes you into a side room with whoever goes with you and explains about skin care, gives you a tube of aqueous cream and makes sure you have no worries or concerns before she takes you to get changed (top half) into one of the delightful hospital gowns. You are then accompanied down the corridor to a huge room with the linac machine in the centre. They have the radio on to distract you and I think there was a picture on the ceiling above the machine. You lie on the bench and the radiographers carefully position you using lasers (lines of green light), your tattoos and old fashioned rulers. The radiographers then leave the room but can still see and talk to you, the machine moves into the first position over you (not too close) and whirs and buzzes a couple of times. The radiographers then come back, reposition you for the second zapping, leave, the machine moves to its second programmed position and you are zapped again. Once the radiographers have returned and moved the machine out of the way you get off the bench, get changed and go. It really is that simple. As Jan says tell the radiographers if you have any concerns or problems, they actually asked me each time on the way to the changing room. Do let us know how you get on and if we can help in any way. Best wishes to you both Pat x
Alipalli
Member

Re: New to Radiotherapy

We went for the CT scan come rads planning session yesterday and all went well. My wife was concerned that the CT scan would be like an MRI which she really is uncomfortable with. Pat, you're right, the staff at St James were excellent, even managed to accommodate my request for rad sessions that meet with my business timetable so that I can attend almost all the sessions with her. My wife is still nervous about the rad sessions but you ladies are so helpful, I think you are all wonderful and you have my greatest admiration.
Jan_mints
Member

Re: New to Radiotherapy

I had my 9th session of 15 this morning. It does take more time to get into the exact position than the treatment itself. My boob is feeling very firm and pink and I have the odd shooting pain. I use both my aqueous cream and aloe vera a few times a day and have found keeping it in the fridge helps.

Tell the radiography staff if you experience any problems. They are very knowledgeable and helpful.

Good luck
Jan x
Trisha_51
Member

Re: New to Radiotherapy

Hi Alipalli, your wife will be in excellent hands with the wonderful radiotherapy dept at St James. I had my 15 sessions of rads there in March/April this year and the centre and staff are brilliant. Your wife will get lots of information from the radiographers re skin care and they are careful to check with you each time you go as to whether you have any problems or worries. The staff are a very friendly, chatty lot who certainly put you at your ease. Even waiting for each appointment we found to be a pleasant experience, we got to see the same people each morning and being in Yorkshire we got chatting and it was all very friendly and relaxed - hope your experience is the same. Do please ask if you want to know any more, or pm me if you'd rather. Best wishes to you both Pat x
Jlr
Member

Re: New to Radiotherapy

Hi

I had my planning appointment for rads, which I presume is the ct scan that you refer to! About two weeks ago and my first session today! There really is nothing to it, I promise. The hardest part is staying really still! The lovely nurses put you in to position and then the machine moves around you..... You don't go inside anything at all, it's not like a tunnell or anything like that. It all only takes a few minutes.

Hope this helps xx
Alipalli
Member

New to Radiotherapy

Hi, my wife is undergoing breast cancer care and I act as her scribe cos she prefers it that way, hope nobody minds. After 8 months of Letrozole tumour reduction therapy she has recently undergone WLE successfully, superbly so thanks to a wonderful surgeon team and breast care team at St James Leeds. No secondary surgery necessary and recuperation is really going well. We had first meeting with Radiotherapy team today and learned lots but we found that we learned a lot about SLNB, Hormone Therapy and WLE by talking to you wonderful ladies. At the moment she is most concerned about what to expect from CT scan which seems to be the next activity before commencing Rads. She's also quite concerned about Rads too but we've got about 4 weeks before that starts. Anyone willing to share positive or negative experiences? Alipalli.