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

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

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

 

likewise, jo!
ann x

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 :frowning: 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

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

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

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

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

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

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

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

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

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 :slight_smile: xx

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

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

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

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.

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.

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