Radiotherapy - so upset at first appointment

Going through breast cancer treatment Radiotherapy
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Hi there - this is my first post on here. I’m almost 54, diagnosed with ER+PR+HR- Stage 2 breast cancer last year in my left breast and have since had surgery and started radiotherapy yesterday.

I’m posting because the radiotherapy absolutely knocked me for six emotionally. I’d thought it would be a pretty easy treatment but the whole experience was really awful. I was a bit freaked out by the big hospital - it’s a specialist cancer centre and all the local hospitals send people there for RT, it felt very impersonal after my small hospital and it was pretty dirty and run down too. It felt like the most “cancer-y” place I’ve been in, not sure how to explain it but it made it really hit home about having had cancer, and I just felt awful being there. I was with my son and I started getting upset in the waiting room so I went outside for some fresh air and then when they called me in it was obvious from what they said that they thought I’d been outside smoking (non-smoker) which felt a bit judgmental.

It was a man that called me in and it turned out he was one of the ones doing my treatment which I’d not expected. He asked me how I was and I said “Not great” and when he asked why I said because of the treatment, which he didn’t say anything about. Then when we were in the room I said I was anxious about the side effects and he just said hadn’t the doctor explained them already as I’d signed the consent form. Yes, they had been explained but I wasn’t comfortable about them particularly as my skin is already extremely dry and sensitive and I’m worried about side effects. I told them this but they just brushed it off.

I didn’t feel comfortable with a man there but I had got quite upset by that time and I was crying a bit so I didn’t feel like I could say anything. There were also two women in the room, one was a radiotherapist who introduced herself but the other one was just standing around and didn’t say or do anything so I have no idea what she was doing there and it felt really awkward.

I had to get undressed behind a screen but they didn’t pull it shut properly. Then they gave me a bit of paper towel that I was supposed to put over my front and walk across the room with this held in front of me but I couldn’t do that as it felt really undignified and vulnerable so I kind of put my jumper back round me.

It was just so awful having to do this in a room full of strangers. I’m really self-conscious about my breasts post surgery with the scarring on one side and then the other one is so much bigger and they are really uneven and look horrible, I didn’t want to show them to all these people just stood looking at me. They just moved my jumper right down off me and didn’t give me anything to cover up or anything so I was just lying there half naked and crying and they were moving my bum about and then my arms and the man had hold of my arm near my breast and I was terrified he was going to touch me on my breast but he didn’t.

They said did I want to wait until I had calmed down to do the treatment but I just wanted to get it over with but I couldn’t do the breath hold properly as my breathing had gone a bit funny with being upset.

When it was finished I got up my courage and said to them how awful it was and how difficult doing all that in front of strangers and that I felt like a piece of meat. The woman just kept going on about signposting me to counselling or Macmillan but I said no, she kept bringing it up though.

I have nine more sessions of this to get through and desperately need some help on how to do it or just some kind and positive words.

Sorry it’s so long, it’s so upsetting and it’s made me cry again just writing this. Thanks for reading and extra thanks to anyone who replies.

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Hi, im so sorry you had a awful experience with your first radiotherapy session. The feeling of fight or flight springs to mind, i too went through the same fear, being overwhelmed, cried, feeling like a piece of meat. Unfortunately they do have to move you around to line up your tattoo dots. Perhaps next time you go, have a word with the radiologist before going in, express your fears and ask for just females to be in the room with you. Ask for a gown, they will prove one. You have every right to feel comfortable whilst going through treatment.
I asked for female only, it was put on record, after that only females were in the room. One nurse made sure after the lining up of dots i was covered so didnt feel so exposed.

Sending hugs to you, you can do this

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Hi arewethereyet,

I feel for you so much and empathise completely. Like you, I thought radio would be a breeze after chemotherapy but I can honestly say I’d rather have another month of chemo.

To be honest I didn’t really know what radiotherapy was, and I mistakenly thought it would be a bit like an MRI…in a tube with only the poorly boob exposed whilst they zap it. I didn’t find out that you are completely topless until the day before my planning appointment and it utterly freaked me out (I have body image issues), especially when I was made aware that I would be expected to accept that men may be present at my appointment. There is no way I could lie semi naked on a bed with men present, when even the thought of being semi naked in front of women appalled me, so I rang up the day before and requested that I be seen by a female only team. Thankfully they were able to accommodate me.

I have found it very difficult to be honest - I am 12 sessions into a 20 session treatment plan. I find that a lot of people say ‘oh they’ve seen it all before, they won’t be bothered what you look like’, which I find massively unhelpful. It doesn’t matter how they radiographers feel, it’s how WE feel that matters. I think it should be made explicit at the pre-planning appointment that toplessness is required and also that men may be present in order to ensure women are better prepared and can make a request for female staff if they so wish.

I am so, so sorry you had such an awful experience. It will definitely be worth giving them a call and requesting female staff going forward - I still hate every second but I have managed to endure it. My consultant spoke to me about it too and said that lots of women request female only teams as it is such a vulnerable and exposing experience.

Best of luck with it and I hope it gets easier as it goes on.

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I wasn’t able to be covered up after being aligned - I’m being treated on a machine where tattoos aren’t needed so I have to be topless the whole time. I know some women are horrified by the tattoos, but I think I’d rather have them if it meant I could be covered during treatment :frowning:

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Thanks so much for replying and your kind words. Sorry you had the same feelings - it does help to know it’s not just me. My appointment on Monday is at 8.15 so I won’t be able to contact them beforehand but I’ll ask at that appointment for females only and also to have a proper gown. I’m hoping it’ll get easier but it just seems so daunting at the moment.

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Hi, while you exprienced a strong emotional reaction, I do get how having a man involved can cause added stress. You would think they’d ask if its ok for them to be involved, but its taken as a given that they are there. I came across a man a few times. Luckily I wasn’t phased by that, and he turned out to be one of the most respectful, best body-adjusters there, though I did think it odd that it was taken as a given that it would be ok.
Its clear that underlying this, is difficulty with acceptance of how treatment has affected your body, and its not helping yourself to refuse counselling about it.
Meantime, when I had it last year, I got a list of appointments ( which was a general idea of when, but was adjusted daily) On the list was a meet with a physio, which was as much about asking how RT was going and emotional support. If this is offered part way through, tell them what you are going through as staying in silent emotional pain acheves nothing.
You will probably have different sets of people involved on different days. I hope you come across more empathetic people next time. I certainly noticed that some people and some days were worse than others. Unfortunately, its the way of life, some people have better social skills and a better beside manner than others. One particularly young girl was particularly bad at positioning and caused pain by thinking my bust was made of plasticene and could be bent against where gravity would naturally let it lie - naive and inexperienced I should think was the reason. She was the only one luckily.
The best people were the ladies on reception, absolutely fab (they got treats on my last day).

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Hi sharlou and thanks so much for your reply. I was a bit taken aback by the whole thing too, even the empty machine with the arm holders and the boards on it looks a bit brutal! It’s so difficult isn’t it and to be honest I don’t care about what the radio team are feeling when they look at me, it’s what I’m feeling when I am looking at them that counts!

My next appointment is 8.15 on Monday so I will need to set off before 7 so no chance to phone up but I will speak to them at the appointment about not having men there and how to make me feel less vulnerable. They didn’t seem very bothered about it yesterday though when I spoke to them so I am not sure how it’ll go down. Got to be worth a try though.

I think I am on one of the same kind of machines as you - I couldn’t see properly as I was lying down but it looks like there’s kind of a silhouette of me on their screen from the planning appointment, and they have to line me up so I match the silhouette lines. That’s a pain if it means no covering up but I will ask them if there is anything they can do.

Thank you so much for taking the time to reply and for your kindness.

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Hiya entropy and thanks for replying - yes there wouldn’t be any other situation where you are expected to be half naked in front of some random man, is there? Even other BC stuff has felt more respectful and although I haven’t asked for it, chaperones have been brought in for examinations with the surgeon and so on. But this all has a totally different feel about it.

The thought of lots of different sets of people being involved isn’t a good one either. More strangers to have to get undressed in front of!

I don’t have any physio appointments on my list, but there’s an appointment with the oncologist half way through so I will raise things there if it’s not improved. I just wish the staff weren’t so blase about things - yes to them it’s everyday routine stuff but not for me! I’ve never done it before (and hopefully after this is finished will never do it again). You would think it wouldn’t take that much imagination/empathy to see how some people might struggle with this.

I am not averse to counselling and have my own counselling sessions arranged to start later this month. It was just her insistence on pushing me towards it and not accepting it when I said I didn’t want to be signposted anywhere that I didn’t like - fine to suggest it once but if I said no, then she should have left it. There’s nowhere local to me for NHS/Macmillan counselling as I live out in the sticks and don’t want to be driving 45+minutes for a counselling session so I have made my own arrangements.

Part of it is because of how treatment has affected my body, but a bigger part of it is that I really don’t like being half naked and vulnerable lying on a table in front of a room of strangers including men. I don’t think a lot of women would be comfortable with that even though some, like you, are okay with it.

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This is part of the reason I was so cross about it - just the blase assumption that women will be ok with it, without allowing them any kind of say in who will have access to their semi naked body! Like you say, appointments with the breast surgeon felt very different - for a start, I only had to get one side out, and the examination lasted maybe a minute? Lying topless on a bed with your hands over your head for up to 10-15 minutes in a room full of strangers is very, very different.

I had kind of assumed men wouldn’t be present, it was never mentioned in the run up to radiotherapy at all. I found a leaflet online which said ‘this is a mixed gender department and you will be treated by both male and female staff’. It’s the inherent expectation that we will just suck it up and get on with it if we want the treatment. Why would there not be a basic understanding that a lot of women would really struggle with being semi naked in the presence of strange men? Very frustrating with a lack of insight, I think.

Sorry - as you can probably tell I feel very strongly about this! I’ve seethed about it for a couple of weeks now…wish I could be one of those women who this doesn’t bother at all but it’s a major issue for me.

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I’m so sorry you’ve had such a horrible experience. I am only at the beginning of things so can’t comment on your experience. I think you should formally complain about how you were treated. It’s an awful time in a persons life and some kindness should be an absolute given when having treatment.

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No need to apologise - I agree with this 100%. Surely it must be obvious that there are many reasons why women wouldn’t want to be lying vulnerable and exposed in front of strange men. It wouldn’t take a lot just to ask beforehand if it’s okay and also to not to have unnecessary people in the treatment room without asking. If the third woman is there again, I’m going to ask that she leaves unless someone can tell me who she is and why she needs to be there.

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Thank you so much for your kindness and understanding Charlie55. Hope everything goes well for you and you’re right, it’s a dreadful time and you would hope to be treated with empathy and consideration during appointments. I must say most of the staff I have met during my surgery and that have been great, some of them have been absolutely outstanding which is probably another reason why it’s such a shock to come across something like this.

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I’m so sorry to hear about your experience @arewethereyet

Your upset and frustration are completely valid and I’m so glad you’ve reached out here. There are so many supportive people here and I hope you find the support you’re looking for.

Please know that our specialist nurses are here for you - for clinical questions or just to chat. They can be reached on our free helpline on 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.

The forum is always here for you.

We’re thinking of you,
Lucy

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Thank you Lucy for your reply and kind words. I spoke to one of the BCN nurses this morning and she was brilliant. Huge thanks to whoever I spoke to - I was a bit upset and don’t remember her name sorry.

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That takes me back to 2004. I loathed all of it but I only had 15 sessions over three weeks Monday to Friday I refused tattoos as i decided they were too like Belsen. That annoyed them as they said they needed them in case I had radiotherapy again. I did get cancer again on the same side and I had a mastectomy and a diep reconstruction so there you go - tattoos would have been a waste of time as you can’t have radiotherapy twice in the same skin.

Stand up for yourself and don’t take anything which makes you feel like a slab of meat on a conveyor belt.

Seagulls

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Hi

All your emotions and feelings are valid

It sounds like the knowledge that you’ve had cancer has hit you like a train and no matter where you are in your treatment you will need some professional help and support to cope with that reaction

You say that you’re getting some counselling after this period but you probably need it now and this will help you cope

Mind, Headspace, MacMillan etc all start with telephone conversations or if you are an employee your work may have a confidential Employee Assistance Programme (EAP) which again starts on the telephone and can sometimes happen over Zoom or Teams or a Maggie Centre can assist with this too?

If the travelling seems overwhelming ask a friend or family member to drive you, ask one to go with you to your radiotherapy appointments and go for a walk or coffee afterwards to help afterwards

Wear a cami top which can be pulled down whilst they match you up for the treatment then ask for a gown, or take a large scarf and ask them to put it over you whilst you lie down

Please practice the breathing so that your time goes as quickly as it can

And even if its a weekend you should be able to call the reception team and tell them that you need an all female team tomorrow and for all future appointments if they can accommodate that they will try

If anyone seems blase, bored etc tell them thats how they are coming across to you…you have to be your own advocate and talking it through prior, during or after any treatment is important

If you feel they aren’t hearing your concerns make a complaint to the on site patient team called PALS

Yes they are busy but you need to feel confident in their skills to treat you

Good luck

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Thank you so much for your supportive and helpful reply. I’ve just tried calling them but everything is shut and doesn’t open again until 8 am Monday which is right before my appointment. I tried the main hospital reception but they can’t help unless it’s an emergency.

I am very lucky as I have lifts arranged for each day - it’s a long drive and it would all be too much to have to do the driving on top of everything else.

I am going to take a big towel with me to the next appointment that I can wrap round me when I have to walk around in the room and it will also do to cover the other side. I wear sports bras at the moment so I am also going to ask if I can keep it on and just pull it down when they need me to.

I’ve had a good chat with a friend about it this morning and she says she would feel exactly the same. She’s actually going to warn another friend of hers who is going through chemo at the mo but will be at the same place for RT shortly. I actually feel more prepared to tackle things tomorrow - it was all just such a shock as maybe naively I expected to be looked after a bit and treated with dignity and respect. Will definitely contact PALS if I don’t get anywhere.

I’m great at the breathing if I’m not crying :grin:

Hopefully with the towel/bra plan plus some straight talking about things that would help me before I have to get undressed it will be a better experience tomorrow, and if not I will get onto PALS.

Thanks again

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Good on you, I need to channel some of that energy. I actually feel a lot more prepared to stand up for myself tomorrow as I was really caught off balance by it all as I’d not expected anything like that. It’s horrible how you were treated, there shouldn’t have to be an argument about anything like this and they should be doing all they can to make things easier for the patients.

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I am so pleased to hear that you called our helpline and found it useful. Please don’t hesitate to reach out to them at any point. We’re here every step of the way.

Sending our warmest,
Lucy

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I wore a stretchy crop top I didn t ask (no reason why you would need to ) I just wore it to walk across to the table pulled it down around my waist at the last minute then up again after. To be fair I did get given a gown each time but I thought they might run out . So sorry you had such a a difficult experience mine was quite different - there seems to be a lot of variation xx

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