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Psychological stress of radiotherapy & what you can do

46 REPLIES 46

Re: Psychological stress of radiotherapy & what you can do

My first treatment was in a big room with two men. I lay face down with a cutaway area on the bed where my boob hangs (to protect lung and chest wall as I'm only an A cup size. I did feel very vulnerable when I took the gown off and had a little cry during treatment. Later I mentioned it to my BCN and the social worker and they completely understood. I felt that the first time was scary and two females would have made it a bit more comfortable. During 20 treatments I only had two men one other time, the rest being either two women or one of each. I also felt a lot more relaxed after the first couple. I found closing my eyes and listening to music removed me too. Having said that though the whole team were wonderful, caring and supportive.

Re: Psychological stress of radiotherapy & what you can do

Thank you Lily for your reassurance. I have stocked up on aqueous cream as I have used this since my ops. I will ask if this is OK to continue using x

Re: Psychological stress of radiotherapy & what you can do

Thanks Beth and Charls. You have reassured me.

I am being positive, preparing what I can and wrapping presents. I am just going to take it easy this year, have my treatment and if need be we'll all stay in PJ'S!! The kids quite like the idea of this actually as I am usually a get up and get dressed mum!! Hope you're treatment goes ok Beth and you feel a bit better xxx

Re: Psychological stress of radiotherapy & what you can do

Hello Ali49,

Please don't be worried about rads. I know some ladies have a few side effects but most don't and if they do they're mild and temporary. I had a bit of soreness and a bit of skin breakdown on ANC scar but applied cream religiously and it soon resolved. It's true you can get tired and I still feel the effects of this after 3 weeks plus since I finished but I feel better every day and am back doing all the things I did before. Best of luck to you and let us know how you are doing.   xx Lily

Charys
Community Champion

Re: Psychological stress of radiotherapy & what you can do

Ali, 

 

hiyer, honestly, don't get too worried......most people are totally fine and the side effects that do exist are mostly quite minor and temporary. I was terrified when the oncologist talked about possible side effects like lung function and bone brittleness and the like. Well, if they've happened, I've certainly not noticed lol I had temporary skin effects, which slowly resolved, but the actual process really wasn't that hard and to be frank it was quite enjoyable seeing the lovely team, having a laugh and chatting every day. The minor problems really are a small price for the security it can give you. X

Re: Psychological stress of radiotherapy & what you can do

Hi Ali

youll be fine I'm sure. The vast majority seem to have little side effects - I think I have just been unlucky. And despite how I'm feeling now, only half way through 😱 I would do it all again without hesitation. (I know we can't have it twice in the same area but you know what I mean!) 

It's a small price to pay to zap any random cancer cells and put this bugger to bed. 

You'll get tons of support and advice on here - no one knows how you feel like all of us on here!!

go for it!! 

Beth xx

Re: Psychological stress of radiotherapy & what you can do

Jas58 so glad you have finished your treatment and coped well..well done! I am 4 days away from starting mine and feeling nervous. Last night I was convincing myself not to have it, however my hubby quickly dispelled that notion. Enjoy some rest now Jas xx

Re: Psychological stress of radiotherapy & what you can do

I' m glad your experience has been good care wise, but I know of many others who have not been so fortunate. Missed appointments, up to 20 different radiographers, machine break downs etc. It's not the fault of the team just funding issues, as always with the NHS? I hope your skin recovers now. Take Care x

Re: Psychological stress of radiotherapy & what you can do

Hi

Apologies but I have to disagree. My unit is new, has four machines each manned by two radiographers and a student. All taking the time to answer any questions, have a good look at my skin and scars, and couldn't be any more kind or patient. Generally the ladies do the breast ladies and they have a chap that looks like an older member of Oasis that does all the prostrate chaps. 

The unit really couldn't be any better but yet I'm still suffering and am in a great deal of pain from my rads. I cannot fault the care I've had so far, nor the staff. 

I truely think that the only lottery in all of this is us, our skin and how it reacts. 

Sorry again but I had to comment. 

Hope you're ok and recovering well

beth x

Re: Psychological stress of radiotherapy & what you can do

I have just finished 25 radiotherapy sessions. I was very lucky as I only ever saw the same 2/3 radiographers each time. My skin is now very pink and a bit sore under the arm, but apart from feeling very tired at times, I have had a very easy time of it. It really depends where you are treated I think and how well staffed, modern, well managed etc the department is. Unfortunately we now live in a post code lottery and private v nhs. Sad times x

Re: Psychological stress of radiotherapy & what you can do

Robin thank you for your comments and advice and thank you to everyone for sharing their experiences. I start my sessions next wed and my biggest worry is how will it affect me?
I know that i will just have to wait and see.
My BCN was very different about my high grade DCIS. She made me aware of all the possible outcomes after ops etc. She was very thorough, very honest and very reassuring. Anyone being treated at Aintree, Liverpool?

Re: Psychological stress of radiotherapy & what you can do

And me too with the DCIS, I'm sensing a trend here...!  On the one hand they tell you how lucky you are that it is only in situ, but on the other hand you need a large amount removed or else a mastectomy, another operation to clear the margins, then radiotherapy and five years of hormone therapy. I found it was really hard to understand how it was such a "good " diagnosis, but they still seemed to be treating it as if it were invasive.

But I read that you're far more likely to need a mastectomy with DCIS than a smaller early stage invasive cancer. With both my WLE and the re excision I knew there was a strong chance I'd still end up having to have a mastectomy in the end. Anyway, I'm glad I managed to hang on to what's left of it, even though there'll be another operation down the track since they're very uneven in size now.

 

Eli, I am really not happy lying on that table and I don't have your experiences. We aren't quite strapped down but it can feel pretty close to it.  You are entitled to ask them to make adjustments to their staffing so there are no men in the room. I don't want to get controversial, but there are women from different cultures where they must have to do that all the time, and you should be entitled to the same consideration. 

 

So far I've only come across women doing the radiography, but it is going to be uncomfortable for me if there is a man there to see my scars.

Re: Psychological stress of radiotherapy & what you can do

Hi Eli, just wanted to echo what others have said and you are not being silly or shouldn't feel a nuscience in anyway.
I used the word vulnerable the other day when talking to someone about my planning experience and not a description I would generally use. I also have experienced the reaction you have about DCIS. You are going through the same treatments and emotions and obviously will have questions. Happy to help in anyway I can. Take care
Jill1998
Community Champion

Re: Psychological stress of radiotherapy & what you can do

Hi Eli,I found the sessions made me feel very vulnerable and exposed too particularly when everyone left the room and I was all alone with the machine and I haven't had the experiences you have had .Dont worry about "being a problem patient " ask to have a word with one of the radiographers you feel comfortable with and explain how you feel and see what they can do.You will not be the only one to struggle with how the sessions make you feel.I have anxiety attacks and the feeling of being trapped was what I really struggled with.GP gave me some Valium to use just before sessions which did help ,also taking total ******* to the radiographers whilst they were setting me up ,they must of thought I was unhinged !!' They do get quicker at setting you up in right position after the first few sessions so hopefully that should help also.Jill

Re: Psychological stress of radiotherapy & what you can do

Very very definitely not pathetic weakness and such a pity you have struggled with BC nurse's support. I'm glad you're getting support elsewhere and hopefully someone who understands what you've gone through and why you may respond to different triggers. Do keep checking in here and I hope today a better day at rads. X

Re: Psychological stress of radiotherapy & what you can do

Thanks Janey,
Not sure about my BCN, as she always gave me the impression that my many questions were an overreaction as I had high grade DCIS and not invasive cancer. I was told by her over and over, "This really isn't anything to worry about", but I was worried. And I had questions as I'd never heard of DCIS before. I got more questions answered by the BC nurses on the BCC helpline.
I'll see how I get on today and if it's the same female that it's been the last couple of days, I'll maybe try to say something. I feel like I'm admitting pathetic weakness though.
Getting some help for it so yes, that might be another avenue.
Thanks Janey!

Re: Psychological stress of radiotherapy & what you can do

Eli can you speak with your BC nurse? They should be able to liaise with the radiography dept for you and they can quietly ensure you have a female team, without you having to explain to them. If you have anyone working with you around the PTSD, they may be able to support you with speaking to the team also. I'm so sorry you are now having to go through more trauma. xx

Re: Psychological stress of radiotherapy & what you can do

Thanks for this! I've got day 3 today and it's been a male and female pairing that I've seen so far. Really lovely people, but I have PTSD from childhood abuse and a teenage attack and this whole thing is freaking me out. I had a flashback during my planning scan and the radiographer said she'd write that on my notes. I find the process of lying exposed in a wide open area very triggering. I hadn't said anything as I don't want to be a ' problem patient' and I'd also be concerned that, if I try to explain the problem, I might get upset.

Re: Psychological stress of radiotherapy & what you can do

Thank you for giving that info Robin. I think now that I will ask for female radiographer. When I went to the local surgery when I suspected a lump I asked for a female doctor. Didn't want to have a strange man feeling his way around! Best wishes to you, Robin, for the future.
future.

Re: Psychological stress of radiotherapy & what you can do

Hi Helen, I wish I had same times but just have to go with it. Tomor is evening then Monday in the morning. You don't know who you're going to see either as there are quite a few radiographers.

Jas, I hope the answers you get are good ones. We will be thinking of you. X

Sleep well all, sue x

Re: Psychological stress of radiotherapy & what you can do

Good luck for 3 days time Jas...are your rads in Chelmsford then, is that nearer to where you live or would Addenbrookes have been nearer? Please let us know how you get on. Glad 2nd one went well Sue but sorry their rechecking aggravated your poorly shoulder..hopefully they wont need to adjust anything else now for you. Are you ok with your times being all different ? My heads been all over the place last few months so thankful ive only got to remember to go each evening!! Big hugs xx

Re: Psychological stress of radiotherapy & what you can do

I am only an hour away south of Cambridge too but am being tested near Chelmsford. Only 3 more days til mine begin 🤔

Re: Psychological stress of radiotherapy & what you can do

Hi Helen. Second one today seemed to take slightly longer as they seemed to have to recheck some measurements.the only thing with that is the pain I go in my right shoulder and arm as I can't keep my arms up high in the armrests for too long. That's following a shoulder replacement. Anyway it was ok. Two guys that I hadn't met before and a young girl from yesterday did it today. All nice though.  I got my diprobase from the doctor. Didn't feel anything today so maybe that ripple feeling was a one off. Evening one tomorrow. 

Its strang cos although I'm tired as not sleeping too well, today I've been busy catching up. Maybe the rads gave me some super powers lol. Won't last long!!!  Hope you get your creams sorted. X

Re: Psychological stress of radiotherapy & what you can do

Hi Sue, hope your 2nd one went well today. I am an hour away south of Camb so opposite direction to you. First appt is at 6.12pm... found all the odd times on schedule slighty amusing, not 6.15pm but 6.12pm & some days 6.18, 6.24pm...mine are all evening appts except 2 on the last day. Am going shopping for some aloe vera gel this weekend & look out for udder cream or diprobase too ...boob will never have been so well moisturised 🙂 xx

Re: Psychological stress of radiotherapy & what you can do

Sorry Helen, senior moment. Just re read and saw you start on the 27th. Not long now then. What time is it that day?

Re: Psychological stress of radiotherapy & what you can do

Hi Helen, would be funny if we were only around the corner from each other. I'm in kings Lynn. They suggested E45 but my doc gave me diprobase but I'm sure the udder milk cream would be good too as I've used the cream before. I also have the pure aloe Vera gel too. No freebies from them of creams so must be cutbacks! The girls were lovely although I prob won't see the same team each time. Let me know when you start Helen. Xx

Re: Psychological stress of radiotherapy & what you can do

Helen I think I may get done for advertising, but Skin Milk Udder Cream is what I'm using and with good results. I do slather it on. It was recommended by others on here and the radiographers approve. I haven't been given anything by team. Wouldn't it be lovely if you and Sue could have a real life Forum!! Xx

Re: Psychological stress of radiotherapy & what you can do

Yes me too Sue, very best of luck for today. I forgot to ask them about which cream to use at planning appt. Did they suggest any particular one to you or please let me know if they do today. Good luck for journey there too. ..i will have an hour each way journey there too from 27th.. ..big hugs to everyone xx

Re: Psychological stress of radiotherapy & what you can do

Hi Helen, yes I'm at adenbrooks, Cambs. You too????    Will post how it goes tomorrow.  Nighty night for now xx

Re: Psychological stress of radiotherapy & what you can do

Good luck for tomorrow Sue, will be thinking of you. Please let us know how you get on. Not sure if we're going to the same place...did i read in one of your threads going to Camb or am i wrong? Sorry about the early start on 2 days.Big hugs xx

Re: Psychological stress of radiotherapy & what you can do

Oops Jane! You were so eager to get there were you!!!! My earliest ones are wed and thurs then bit more civilised. I thought being hour away they wouldn't have given me earlies. Nevermind I'll try and go with the flow. Work this eve then taking some time out. Have a good evening x

Re: Psychological stress of radiotherapy & what you can do

Morning morning Sue - one more sleep! With such an early start I hope you do t do what I have today and turn up an hour early! Xx

Re: Psychological stress of radiotherapy & what you can do

Hi Jane, you're doing so well. Not long now eh!  Hang in there girl! X

 

nihty night

 

Re: Psychological stress of radiotherapy & what you can do

Hello Helen and thanks so much for posting. You've been through so much already it's absolutely your prerogative to ask about female-only radiographers. I'm very pleased to hear you're going to ask! It's not easy but you have absolutely nothing to lose and I am sure they will be sympathetic. Well done and GOOD LUCK and let me know how you get on. Massive hugs. Robin x

Re: Psychological stress of radiotherapy & what you can do

Helen you were spot on in your quote. What a place this is. Sue you're equally spot on in that I think the Anastrazole is kicking in. I've been taking for a month now. I was just at the end of menopause at diagnosis and barely getting any flushes. This weekend back to square one! Today another day and will be able to tick off no 10 and half way point. Love to you all xx

Re: Psychological stress of radiotherapy & what you can do

I like those words you quoted from your plaque Helen. We all here for each other despite not having met. Thank you to everyone who has written on the forum. The advice, support and friendship is invaluable.

Jane, I can understand about the mood swings. I wonder too if the anastrazole contributes to it. I've been like a roller coaster lately. Can't seem to help it, and not started rads yet!! Sending a hug. Hope you get on ok this week. Xx

Re: Psychological stress of radiotherapy & what you can do

Sorry you've been hit by fatigue and low mood this week Janey, i hope the next few weeks improve for you, hang on in there. We are all here for and thinking of each other. A friend gave me a lovely little plaque recently. .it reads 'true friends are never apart, maybe in distance but never in heart'...it makes me think that although we are all virtual friends on here, & live many miles apart around the country, we are all being thought about by each other and wished well on our recovery journey. Take care everyone xx

Re: Psychological stress of radiotherapy & what you can do

Thank you so much Robin for your honesty. Good luck tomorrow and so glad you're nearly done. I haven't struggled too much with the sooooo many faces, other than one man I'm sure I know through my work. However, I have this weekend been taken aback by a hit of fatigue and low mood, which knocked me for six. Big hugs to all. Xx

Re: Psychological stress of radiotherapy & what you can do

Hi Robin; good luck for your last rads session tomorrow and i am glad that you have a lovely evening to look forward to with your friend to celebrate, enjoy it. Thank you so much for sharing your experience and feelings during your rads, and i am sure there are many others who have felt , and are feeling, the same way...i am also one of the people more like you have been, beginning to feel very stressed and tearful about my rads in 11 days time with the prospect of many different people, of both sexes, over the 3 weeks and being on show to everyone 😞 I feel very silly for feeling this way because (like everyone here) ive stood up and fought head on this damned bc until now and tell myself a lot of people have dealt with it and just got on with it and so must i.... But as a very shy person i feel like a quivering jelly the nearer rads gets... My hospital certainly didnt mention the possibility of only opting for female radiographers..SO i am going to try to be brave and ask in my first session if this will be possible and hope they don't frown on me for asking. ..i know that this would make a huge difference to me so thank you so much for advising it is a possible option. Wishing you all the best. H xx

Re: Psychological stress of radiotherapy & what you can do

Absolutely, Robin.  so glad to hear that you've addressed it with the hospital & that they have responded positively.

ann x

Re: Psychological stress of radiotherapy & what you can do

Thank you, Clair, yes, I'm going out in the evening with a very old friend and fellow breast cancer survivor!

Very best wishes to you for your treatment, hopefully it will be an easy ride for you, as it seems to be for most people here. Lots of love, Robin

Re: Psychological stress of radiotherapy & what you can do

Thanks Ann. I think there are plenty of people on this forum who feel as you do, but I wanted to redress the balance by reassuring those who are not OK with it that this is nothing to feel bad about, that they are NOT unusual or odd in finding it stressful. I'm not sure if those women will see this thread but I hope so.

 

I have certainly given my feedback to the hospital and as they are revising their literature they have asked if they can run it by me for feedback. So they are very interested and open to comment.

Re: Psychological stress of radiotherapy & what you can do

likewise, jo!
ann x

Re: Psychological stress of radiotherapy & what you can do

Ann I was fascinated by it all too, call me mad but I looked forward to going each day and was quite sad to finish! My niece came with me most days and we had a hot chocolate and a cookie in the M&S cafe as a treat each day 🍪I pretty much saw the same few every day and made some great friends in the waiting room who I've met up with since, just very grateful to have had the treatment and 18 months on I'm happy, healthy and getting on with life! Xx 

Re: Psychological stress of radiotherapy & what you can do

Hi  Robin,

 

Thanks for posting, I must admit I was one of those who wasn't bothered at all by the treatment process, in fact, I found it interesting & oddly, quite enjoyed it, it never occurred to me that others felt differently. 

I did, pretty much, have the same team throughout my treatment, so I did get to know them.

 

What is important, as you so rightly highlight, is to speak up if not feeling comfortable or happy about things, if you haven't already, it may be worth giving your feedback to the hospital, it could make a difference to others.

 

ann x

 

Re: Psychological stress of radiotherapy & what you can do

Thank you for your honesty and advice I'm starting my rads in November. The whole journey is so frightening and at each stage I think I'm going to get better at coping but I'm actually not. So it's really good to get advice from someone who's been through it already, I'll think of you on Monday and your last RT session I hope you do something lovely to mark the occasion lv Clair

Psychological stress of radiotherapy & what you can do

Hello everyone, I've only one more RT session to go on Monday and then I'm done. It's been such a rollercoaster and I wanted to share a couple of things I've learned, especially for anyone who's about start treatment or just started. There are some things no-one spells out from the start, and I wish they had done, because I would have been better prepared.

 

First of all, it's likely you will NOT be seeing the same radiographers every day. I have seen over 25 different people in the last three weeks (I stopped counting). This had a big effect on me - being looked at and touched by strangers every day was stressful and I gradually found myself unable to sleep for thinking about it, then feeling anxious all day, irritable and tearful for (what I thought was) no reason. I told myself it was stupid, that I had to be grown up, not be difficult, be grateful, "they see boobs all day long it's nothing to them", etc etc. But it didn't change the way I felt. I felt degraded, a victim - everything I've fought against since this whole cancer episode began. I was grinding my teeth at night, chewing my fingers during the day. It got to the point where I actually started wishing I'd had a double mastectomy rather than a lumpectomy, as then they wouldn't be able to stare at my breasts because I wouldn't have any.

 

A senior radiographer told me that 25 years ago the same team would work on each machine, and you'd see the same people for your whole treatment, so they got to know you, and you them. That's just not possible any more.

 

Secondly, you have the right to ask not to be seen by male radiographers, or students, if you wish. This is not unreasonable, and they will do this (discreetly and kindly) if you ask. I didn't ask this until I was nearly at the end of my treatment, because I wasn't aware it was am option, plus I didn't want to make a fuss - telling myself plenty of women have been through more than this, why can't I just cope with it like a grownup, etc.

 

I honestly wish I'd been told these two things - the information I was given was all about what cream to use, how to stay hydrated, be prepared for feeling fatigued... nothing about the possible psychological trauma or how to manage it.

 

This forum has been wonderful for me to keep me going, and I've been amazed at the resiliance and courage when I've read what people have been through. I know that many women do not worry about being treated by men or students, or by lying half naked in front of strangers, but for some of us it's extraordinarily and unexpectedly difficult. The anxiety and anger can build up if you don't say something. I honestly thought I'd sail through this. We just don't know how things are going to affect us I guess.

 

I had my review meeting on Friday and brought all this up, and they were worried I'd now need counseling, which isn't something I've ever needed or considered. However, if I ever have to go through this again, I now know what to do - have a session of hypnotherapy prior to treatment to manage my anxiety (I've had it before for performance nerves, nail biting etc and it always works like magic for me), and request female radiographers only. 

 

I know I can't be the only one who's felt this way, and I hope I'm helping by saying this and not scaring anyone - I don't want to do that, but I do want to say that if you are feeling anxious, tearful, stressed about the position you're in during treatment, do say something - I phoned the hospital because I couldn't say anything to the radiographers themselves during treatment, I felt too passive and vulnerable. It was only by talking it through that I realised it was more bearable for me if there were no men in the room.

 

If this post helps even one woman then it will be worth it - to everyone going into radiotherapy, you have my very best wishes for a smooth sailing, and let's hope for all of us it won't need repeating. 

Robin xx