Radiotherapy nakedness!

[amyj]

Hi @roxie1
Absolutely agree. There should be a choice when there are other ways.
My team would, had I not adamantly refused them from day one, & sourced the tattoo pen myself (by Inkbox, about £20 on Amazon) have given me permentant tattoos or had me travel to a machine that doesnt need them (uses body scanning). Ironically, my hospital has one if these, but just arrived & will require 6mths to set up. Too late.

I was very clear from diagnosis that if I needed RT tattoos were not happening. My breast care nurse got on it, & they initially rejected my tattoo pen idea as it was not ‘NHS approved’. I now have a new oncologist though, who is willing to step outside the NHS boxes on treatment, & my whole radiotherapy treatment is a bit of an educated experiment!

I’m only 40, but he’s allowing APBI, which my previous oncologist was too afraid to go with, even though the only criteria I didn’t tick was the age box (10yrs too young!). But I & the new oncologist had looked at several international trials & guidelines where it is being used successfully with women my age. Progress never happens if we are always too afraid to do things any other way than how it has always been done!

That vibe seems infectious. I took the tattoo pen along to planning, & they wanted to use surgical marker & Tegaderm first, but were very interested in it & said they felt they needed to look into them going forward. I would recommend NOT allowing surgical matker first, or Tegaderm over it, if you are using a tattoo pen - the tattoo pen only.
The surgical marker they used first on me, created a barrier between my skin & the temporary tattoo ink. They then did not allow a full 10mins drying time & stuck Tegaderm over the marks.

There are 18 days between my planning & first session. The Tegaderm (as I warned when they insisted on sticking it on) was fluffy from clothing & rolled off after 3 - 7 days. When it did, as I had discussed with the team, it brought off most of the strength of the tattoo ink & surgical pen. As they told me to do, I then carefully drew over the faded exact crosses they had made with the tattoo pen, allowed a full half hour of drying time, stuck nothing to them (how the instructions tell you to apply the ink) & they have been stable ever since.

I have another week to go to keep them on. I can shower & bath, they stay put.
They will hopefully grey out a little over the next week (the ink relies on your skin renewal & exfoliation to fade) - I am waiting to hear from my BCN about whether they want to check on them this week given I’ve had to draw over all 4 of them now, & check my accuracy. But I am letting them fade a little in case they need to renew or reposition any if they are not correct (the team made an acetate template of the marks at planning too, so they would be able to check their position) before treatment.

I will let you know how it all goes, if it works/they are happy the marks have remained & in the same position.
Would recommend if anyone else is wanting to try this with their team, to INSIST they follow the instructions on the tattoo pen only, & not feel a need to do things ‘they’ve always done, because we’ve always done it’. Sticking the Tegaderm on & marking first with surgical marker, just because that is what they would usually do on someone not having tattoos - but also not using a temporary tattoo pen that needs to sink into the skin & develop - are the reason I had to renew the tattoo pen a few days later. Tattoo pen only & allow proper drying/development time. Xx

[sharlou]

Oh I sympathise with dentist phobia! I hope you get sorted with sedation xx

[sharlou]

Thank you I think one of the things that has irritated me is the kind of blase attitude that men will be there and we’re just meant to suck it up whether we like it or not. The literature from my unit just said ‘we are a mixed gender team and treatment will be given by both male and female staff’. No mention of being able to request female staff and no consideration that some women would find that massively difficult. There’s almost an attitude of ‘well if you want the treatment you will put up with it’.

I’m not bothered about any other part of my body. I’ve had male students in the room when I’ve had gynae procedures. But I have major major issues with being topless. It’s a lifelong thing with probably many complex reasons behind it that I won’t go into. But for me, it goes beyond mere embarrassment. I think the possibility of men giving the treatment should be discussed with women before they even get to the planning appointment so they can be prepared/request a female team if they so wish

Thanks again for your kind words xx

[sharlou]

My hospital don’t use tattoos or ink on the skin…they just stuck some stickers on me, did the measurements and then the stickers were removed. My oncologist said they were phasing out using tattoos but I don’t know how accurate that is.

My planning scans and positioning took about 5 minutes, which worried me a bit as some people say it takes ages - made me wonder if mine were done properly!

[amyj]

Perhaps they have one of the new, body scanning machines that they were going to have me travel to? (I would definitely have travelled to avoid tattoos!)
I think it’s one of the most important things they can do for BC patients to try & get rid of the tattoos for RT.
We really don’t need any more distressing body changes we feel we have no control over. If it’s doable another way, it should be done another way, for everyone. Xx

[noots]

I can relate, honestly - there are reasons for me, also.

But even if there weren’t, why the hell are we expected just to lie half naked, vulnerable, with men around?
And ok, radiographers are medical professionals, and those doing radiotherapy are highly trained… but they aren’t doctors, and actually that does feel different.

I wasn’t aware there was a choice, nobody told me I could ask for women only. The session after I’d requested female only, I asked who was doing my session and it was two males!! I was like, “absolutely not!”. Apparently, that is allowed - and again, I don’t distrust them at all and of course, it’s all monitored anyway, but that is not the point! I did raise it when I had me “review” with the lead nurse type person there.

Anyway, you absolutely do not have to put up with it, stand your ground, hold your head high and insist on what is right for you!

[sharlou]

Couldn’t agree more! So glad you stood your ground. Agree it’s not about the professionalism or otherwise of the male staff at all, I’m sure they’re all fab at their jobs. With the doctor thing, I think the difference I feel is that I’ve only had to whap the ‘poorly’ one out. And it’s been for maybe a minute at a time at most (apart from surgery but there’s the whole being knocked out thing to compensate for that). With the radio, it can be up to 10-15 minutes of lying on a bed fully topless. Different kettle of fish isn’t it!

So glad you were able to advocate for yourself, it’s super important given that there’s so much beyond our control

[Tigress]

I find it odd that you would get two male radiographers for something like that as any male doctor, GP or specialist, has to have a female chaperone if any testing is done or physical contact is made. I had a colonoscopy last week and the head male radiographer absented himself from the room during the knees-up “stick” up the butt bit. Seemed intuitive. You’d think they’d at least ask.

[roxie1]

Hi Sharlou - one small mercy - no permanent tattoos!
Re the issue of female staff, it’s tricky in general, isn’t it - because in some circumstances there seems to be no choice e.g. gender of surgeon you are allocated. I hope you can find some mental relaxation method to calm you when undergoing treatment.
Sending hugs and best wishes.
xxx

[roxie1]

Agree - it’s like the thought process that underlies the principle of chaperoning stops at RT door. Although I also appreciate that only specialist staff can be present when radiation treatment is planned/given and there is a national shortage of specialists, which may make it hard to accommodate gender preferences and requests from patients.

[roxie1]

Hi amyj - this is such useful information!
Thanks so much for sharing.

I’m particularly interested in NHS and tattooing policy as I’m researching nipple tattoo options for when my treatment is complete as I had one nipple removed from the cancerous breast
.
From reading widely on the topic, it seems NHS nurses have very short tattooing training courses - compared to the many hours put in by professional tattoo artists who specialise in medical tattoos. Also professional tattooists who work on women post breast cancer surgery avow that the NHS policy of using semi- permanent ink that fades and needs ‘topped up’, potentially a couple of times - is more harmful to delicate skin than properly-applied permanent ink.

I’m a long way from being ready to do this and I realise it should probably be a new topic
/discussion thread as I’ve veered off course a bit - apologies. Don’t wish to hijack your post, Sharlou!

But the different approaches on these matters are fascinating. I’ve seen some really BAD nipple/areola tattoos that look like slices of salami…I’d be horrified if that were the result so I am taking my time and following a few experts on this.
If anyone reading has any insight/experience on this, please do shout. I will also look at starting a new thread perhaps.

Best wishes xx

[annie8]

Hi Roxie I felt very uncomfortable to start with. I went into the radiotherapy room with a gown, they arranged my arms behind my head but then the gown had to be pulled down while the radiographers arranged me on the table, and it took ages while they took lots of different pictures before actually doing the treatment. Sometimes I had 2 women, sometimes two young men, sometimes one of each. I had 15 sessions altogether and I never did feel comfortable but they were all very professional and helpful. Anne xx

[square-boob]

Hello Sharloe
Thank you for writing this!
I have said this to my family that it is exposing. I am a week since completing 5 days radiotherapy and yes i was topless stretched out on a “shelf” with people of all shapes and sizes in the room. Now i have to say EVERYONE is deeply respectful and kind but it doesn’t change how you might feel about doing something so against everything about who you are. Ever since this all began i have had awkward thoughts about how i am just expected to lob my boob out all the time when in no other situation do you do this. Its all very respectful but is one of those things i found myself having to come to terms with.
Even my husband watching while another male examined my breast made me feel odd and I have only ever said this out loud right here now. I think we have a lot of internal stuff going on we are trying to work out that we don’t share.
But back to the facts. Basically, yes i went behind a screen undressed to the waist and was either offered or asked if i wanted a piece of paper or pillow case to cover up as i walked out to the machine. By day 3 i was happy to walk out without anything but still used my arm across my nipples as I felt better that way.
On my last day it was two males but a female joined to double check their measurements before startIng. The worst thing about that session was that they left the room to begin the process as they always do and it was the longest time before anyone spoke to me through the intercom and i almost shouted out to see what was happening but didn’t and it eventually began.
It is an uncomfortable process, i found it exposing because thats me, but i cannot fault how i was treated by the radiographers.
Im done now and dealing with the aftermath.
Honesty about how we feel in this situation is better than pretending its fine.
Best wishes to you xx

[sharlou]

Well done on getting through it! Flopping a boob out on a regular basis is a bizarre experience isn’t it? I’ve been able to compartmentalise getting the poorly one out, but still massively struggle with the thought of being topless, even with female staff. I’m sure many people think I’m silly for being so stressed about it, but it’s a real ordeal for me. I know people are trying to be kind and put me at ease with the ‘they’ve seen it all before’ comments but saying that to me is kind of like telling someone with depression to cheer up.

Get what you mean about the hubby thing too! I was talking to my oncologist about it and I said I would still be massively uncomfortable even if my husband were there! Incidentally, my oncologist agreed that women should be specifically warned that they may be treated by male radiographers so they can request female staff if that would make them more comfortable.

I really need to stop fixating on this now, it’s happening next week whether I like it or not. Just something else to suck up!

Thanks to everyone for all of your comments. I know a lot of women don’t share my anxiety and it’s been good to read differing perspectives. I think I will always be of the opinion that women shouldn’t just be expected to accept male staff for this treatment though!

[chatterbox]

Hi @sharlou

You put it so well, how you are feeling. My least favourite part of any of my treatments was the expectations of anyone (especially hospital staff) that I should just be grateful for everything and suck it up! Mental health often seemed to be at the bottom of the list of considerations - if only it were given parity with the physical health side of things.

On a lighter (?) note, my husband is so hospital phobic that he couldn’t attend any of my appointments. Strangely, I think, I felt less awful having to strip off in front of the male surgeon and radiologist for biopsies as he wasn’t there. I was most mortified when I had to have my breasts measured in every dimension by the surgeon, for him to determine whether there was enough tissue there to allow for a lumpectomy rather than needing a mastectomy. I stood bolt upright, looking at the wall, trying to pretend it wasn’t happening - it was horrible and seemed to take forever.

Sending hugs, and thinking of you for your radiotherapy next week. If you’re up to it, let us know how you survive the whole process. xx

[naughty_boob]

@sharlou I think it’s really important you have started this thread. I think many of us just go with the flow and accept what is offered. We are not even given the option of female only team. That was me!

I have spoken to some men who had prostate cancer and have radiotherapy to their ‘nether’ regions, have tattoos and lie legs akimbo for radiotherapy. Many of them have had women and some older gents have felt uncomfortable with younger women doing their treatment. The felt that they could be their grand daughters. They acknowledged the staff are professionals but it doesn’t take away their feelings of being uncomfortable. They were not offered a choice of men only.

Maybe this is something BCN could look into as a topic for review at cancer centres across the U.K.?

It’s a shame some people feel the need to say suck it up or they’ve seen it all before without acknowledging how you feel. We are all individuals and feel and deal with situations so differently and that needs to be accepted and not push views on others. This forum should be a safe place for us all to share how we feel at such a vulnerable time in our lives. It’s good to have different view points, such as ‘if it was me I would feel’ rather than ‘you should…’

Take care and I wish you well in your radiotherapy

[sharlou]

Oh having to be measured like that sounds dreadful! My surgeon examined me for perhaps a minute and that was it. Any time I’ve needed to be examined it’s been poorly boob only and for a very short time. Hats off to you for getting through that!

I agree that mental health isn’t given enough emphasis throughout this whole ordeal. It’s a hamster wheel existence…get through this, get through that, onto the next thing…Our physical health is monitored to the letter but our mental health goes unchecked.

I’m feeling a bit better about next week, kind of. I know I’ll be having a female team and I am grateful for that. I’m not sure I could have gone through with it otherwise!

Will let you know if I prevail xx

[sharlou]

Ah thank you so much, that’s really kind of you to say! I hummed and hah’ed about starting this post as I felt so wussy. Back when this all started I was contributing to a thread about whether to take antihormone or not, and I said I would be taking it, as my mentality is to chuck everything humanly possible at it - I somewhat flippantly said that the way my brain works, if someone told me to stand naked on Nelson’s Column to cure my cancer I’d do it. My, didn’t those words come back to bite me!

I can well imagine some men must struggle too. My husband had an inguinal hernia op not long ago and there were young women present when he got examined - he hated every minute but didn’t feel he could say anything about it cos he’s a bloke!

I’ve done some very cursory research, as I thought surely I can’t be the only woman to feel this way, and I found some studies, one done just last year, that show the majority of women expressed that they would prefer female staff only during their treatment due to ‘modesty’ concerns. Maybe the fact studies are being done means it is something that health bodies are aware of, but as has been noted if a hospital has only male specialists then women will have to continue gritting their teeth and getting on with it

[amyj]

Hi @roxie1
Right at the beginning of my journey, when I didn’t know which op I would need, I did a little research on nipple reconstruction & because convinced that this might be a private op if it was financially doable, certainly a private route for the tattooing afterwards.
I didn’t like the look of some of the NHS results and felt it might be much easier to see the previous works of a private tattoo artist and see a likeness to what you will be getting.
It wasn’t super expensive to do it privately - between £200 & £500 per nipple, but in my opinion, to feel happy and comfortable with what you can expect to get, & with yourself afterwards, is priceless.
During this research, I also came across flesh coloured tattooing over the top of scars to help blend them in…still something I might be interested in once my scar has fully matured, if I feel conscious of it. I only have the one scar in the lateral fold of my breast, but it pokes out a couple of centimetres above my bra under my arm, and depending how it looks in a sundress in a year’s time…well, we’ll see…

[homebabe]

Hi, sharlou–

Wow, our experiences are all so different. For the planning scan I had a male tech and he was very sensitive. I had 16 higher dose sessions and each one lasted about 10-15 minutes. My first day was so uncomfortable, tears were streaming down my face. I have osteopenia and the hard surface of the machine was killing me. I had two women and both came running out afterwards to apologize that they didn’t notice my discomfort. One even offered to massage my shoulders.

The next day, they spent a lot of time trying different pillows and forms to make me as comfortable as possible. It made a huge difference. I didn’t have tattoos. I had a marker and tape. They gave me a sharpie to take home to make sure the Xs were visible after I showered. I changed into a gown in a small room and then walked just a few yards to the treatment room. I had to pull the gown down to my waist. It’s awkward but the room had a thick door that closed before each session. My main discomfort was that I was freezing. I’m so cold-natured.

I’m 67 and had high grade DCIS and a lumpectomy in my left breast. I was real lucky that my skin didn’t have a bad reaction. I was told to use Banana Boat after-sun lotion along with the medicated drops I had. Try finding sun products in November! My only side effects were fatigue and thirst. My last treatment was right before Christmas and I now have one breast with a pink areola and my cancer boob areola is brown. It’s pretty funky looking. I took pictures of my chest and showed my friends and female family members. They made me feel much less negative about my breasts. I’ve gained and lost so much weight over the years that they’re droopy and I’ve always been self conscious about them. Now I’m just grateful to have them.

So glad you got female techs. Don’t be afraid to ask for whatever makes you more comfortable. You’re going through a really tough experience and your techs will be able to guide you through this. Here’s a picture of my last day of RT. Take good care of yourself.
!