Radiotherapy Starters January 2023

[MajesticTiger]

Hi @kitti26 , I had a really nice chat with the Radiologist and she could see my skin was holding up well with the treatments. 
She told me that I’ll be given contact details at my last appointment and emphasised to me that if I have any concerns about anything, then not to hesitate to contact them or any of my Breast Care Team, as skin changes could still happen for up to 2 weeks after radiation treatment ends.

She also advised not to worry if the radiation treatments alter my reconstruction, as she said there are lots of things that they can do and my Plastic Surgeon will look at all options of what can be done, to ensure I am comfortable/happy with the aesthetics side of things, which was really nice to hear, as I feel guilty mentioning my worries about the possible radiation affects (hardening/shrinkage) on my reconstruction because the most important thing is that they have removed/treated my cancer but my Drs/Nurses all understand the psychological importance of being happy/comfortable with our reconstruction, so we feel confident going about daily life and not wanting to hide away because of feeling self-conscious about our body image.

I’ve got 3 more Radiotherapy sessions left and Friday will be the end of all my ‘active’ treatments 🙌🏼 I can’t believe it was exactly 1yr ago (08/02/2022) that I visited my GP about my painful breast lump, totally oblivious to what the year ahead had in store for me.

It has been a long year but it has also flown past and now when I sit and reflect on my treatment journey, I remember and appreciate all the wonderful talented/highly skilled/compassionate ‘and very patient’ medical professionals along my journey (especially when I went to most of my Consultant appointments with lists of questions 😊) and the way they went above and beyond for me and I realise and acknowledge how truly blessed we are to have these brilliant people working in our NHS.

🫶🏼💗 xx

[kitti26]

Hi @MajesticTiger 

How did your check up / assessment appointment go today 🤞🏻🤗

[MajesticTiger]

Hi @kitti26 , thanks for your ‘good luck’ wishes.

These aches and pains (aftermath of treatments) are quite annoying aren’t they - when we just want to move on but our bodies are holding us back - we just need to keep going and do our exercises and one day we should hopefully feel pain-free 🤞🏼

I don’t like taking lots of medications either - I feel my body is still trying to detox from the chemo, although I’ll be starting Tamoxifen once my Radiotherapy has finished, so not looking forward to having to take hormone tablets for the next 10yrs.

The weakness/jelly legs and fatigue are frustrating, especially when I had pretty good cardio fitness before diagnosis - I hope it won’t take too long for our fitness levels to recover.

I’m still currently going through my Radiotherapy - today will be my 11th session out of 15 - my last one will be this Friday.

I was told on Friday last week that I’d be having a review with the Radiologist today - I think it’s just for them to check how my skin is doing mid-treatments, I don’t know what else todays’ meeting will entail.

Hopefully you don’t wait too much longer for your post-treatment Radiologist appointment.

🫶🏼💗 xx

[kitti26]

Hi @MajesticTiger 

Thank you for your reply 🫶🏼

My arm tightening hasn’t really improved much this week , even with my extra exercises but the tightness is at its worse early evening before bed, so I do my last 5 mins exercises & take paracetamol to sleep if it’s that bad but I do try my best not to , as really conscious of how many tablets I’ve taken the last 6 months

I too have weakness / jelly legs by early evening & breathlessness , I’ve tried walking one day in my lunch hour for 10-15 mins last week, felt tired after work & had to have a rest  when home but will try again this week for one day & gradually build it upto 2/3 times a week if I can 🤞🏻

I’m still waiting for my radiologist after treatment appt for my check up, how many weeks did yours take to arrange ?

Good luck for your appointment tomorrow 🤞🏻🤗

[MajesticTiger]

Hi @kitti26 , that’s great news you’ve completed your Radiotherapy 🙌🏼 hope you’re doing well.  They say things can get worse in the two weeks after finishing before they get better - how have you found it since finishing?

The Vaseline intensive moisturiser with aloe vera is my usual moisturiser that I’ve used for years, however, I was told I wasn’t allowed to use it during radiotherapy - I’m using MooGoo Natural Skin Milk Udder Cream and so far my skin is holding up well. 
However, the radiotherapy treatments do seem to be aggravating my ‘cording’ in my left arm that I’ve had since the beginning of December 2022 and my recurrent seroma from my sentinel lymph nodes surgery is a bit more tender too.

I’ve been told I’ll be having a review tomorrow (Monday) with the Radiogragher, don’t know what that entails other than them checking how my skin is doing.

I’m not that bothered about whether my nurses are female or male, for me it’s my hair loss from chemo that I’m more self-conscious about and don’t like anyone seeing my scalp, so when I’m changing between my wig and headscarf before and after treatments, I don’t like the fact the nurses can see me doing this -I do have a fine layer of fuzz that has started to grow back, but still not enough for me not to feel self-conscious without my wig.

 I finally remembered to ask about the tissue sheet and was also told it was for dignity reasons and it will not affect how my treatment works (was told only ‘lead’ can prevent the radiation getting through).

I’ve been feeling fatigued in the evening - think it’s a combination of the remnants of chemo and the radiotherapy.

The ‘Docetaxel’ seems to have affected my fitness, as my leg muscles get really weak/turn to jelly when I walk up a few flights of stairs and I get breathless more easily - I’ll need to slowly build my fitness levels back up.

Hope your energy levels are starting to return and your arm/shoulder aches/weakness is improving. 
Hope your upcoming chech-up appointment goes well.
🫶🏼💗 xx

[kitti26]

Hi MajesticTiger / Nessie,

I’m sorry to hear you thought your dignity was compromised in changing in the radiology room, however I too only had a screen in some scanner rooms but not all.  Personally I didn’t find it a problem, as they were seeing my breast to set up the machine settings anyway.

The tissue sheet was placed over my breast once the machine was ready to start & when I initially asked, it didn’t affect the radio session but was for dignity purposes only.

I was advised to cream on the night time when getting undressed or washing, no urgency was needed but it helped with moisture levels & flexibility of the skin to prevent any skin breakage.  I personally use Vaseline intense moisturiser with aloe vera, as this also helped to keep the skin cool and highly recommend it.

Hope the rest of your sessions run more smoothly & remember these sessions are for your health & well being so if your feeling uncomfortable in anyway please address this with the nurses and ask for FEMALE only radiologist , as you DO have a choose.  I was asked in my initial meeting if I objected to male radiologist and they MUST respect your decision.

Take care of yourself & don’t be reserved to ask any questions or preferences 🫶🏼

I’ve finished my last radio session last Friday 27th, felt quite a bit of fatigue this week & arm / shoulder aches so I’m stepping up my arm exercises this week, waiting to speak with  a radiologist for my check up telephone appt next week 🤞🏻

Hope your coping well with your session too this week & both feeling well 🤗

[MajesticTiger]

Hi Nessie, great to hear that you’ve had no significant side-effects from your Radiotherapy treatments - I’m having my 8th out of 15 sessions today and so far my skin seems to be holding up well 🤞🏼
I was very fatigued yesterday evening and this morning but not sure if that would be from the chemo that I just finished on 5th January or if it would be from the Radiotherapy - I’ll just need to rest when I feel I need it.

Sorry you had inadequate changing facilities in your Radiotherapy unit too - yours sounds even worse than mine - it feels quite undignified doesn’t it.
I had seen comments on previous threads on this forum about moisturising immediately after treatment but when I asked my Radiotherapy Support Nurse, she said there was no evidence about needing to moisturise immediately after and I could just do it when I got home (which after seeing the lack of changing privacy, I was glad to wait till I got home to moisturise).

Since having my last 3 chemo cycles (Docetaxel), my fitness has taken a huge dip (my leg muscles get fatigued/feel like jelly really quickly when walking up stairs and I get more breathless, so I’ll need to build up my fitness levels gradually again.

It’s interesting how different health boards have different procedures for coverage during treatments - I have no idea if the tissue paper which covers part of my treatment area reduces the effectiveness of the radiation dose - I imagine it doesn’t otherwise they wouldn’t put it on surely - something I should try to remember to ask my Radiotherapy Support Nurse.

May recovery continue to be positive as we move forward after active treatments.

I will be starting 10yrs of hormone therapy (Tamoxifen for 5yrs, then will possibly be moved onto a different hormone drug for last 5yrs) after my Radiotherapy, so hopefully side-effects from that will be minimal 🤞🏼
🫶🏼💗 xx

[Neesie]

Hi MajesticTiger,

 I completed my 15 sessions of radiotherapy on 19th January and so far have had no significant side effects 🤞hoping it stays that way. I had a follow up call from the radiotherapy nurse on Friday and she seemed to think that if my skin and energy levels have stayed ok until then it is highly unlikely that they will change now.

 I understand your discomfort with the changing arrangements in the radiotherapy department. There wasn’t even a screen or curtain in the room I was treated in, just a rail where a curtain should have hung and a half hearted apology from one of the radiotherapists on my first visit. I didn’t mind undressing in front of the staff too much and didn’t have the wig problem that you have which must be difficult. However, I was advised to moisturise immediately after treatment during my planning appointment but didn’t want to do that in full view so ended up getting dressed quickly after each treatment and then going into a toilet cubicle on the way out and having to get partly undressed again to apply the cream in private. I too expected there to be private changing cubicles as there were for the planning appointment.

 I didn’t have tissue paper placed over any part of me, the whole right side to the waist was left bare and my gown was draped over the left side and breast but it often slid off. My skin seems to be fine in spite of this though, I think moisturising and drinking lots of water were the most important factors. I also continued to exercise throughout treatment and think this has helped to maintain my energy levels.

 I hope the rest of your treatment goes well and that you find a solution to the changing dilemma. 😘

[MajesticTiger]

Hi everyone, hope you are all feeling well on this Saturday morning.

How are you getting on with your Radiotherapy sessions so far?

I have completed 5 out of my 15 Radiotherapy sessions so I’m one third of the way through.  So far my skin is holding up well - hopefully that’ll continue 🤞🏼.

The bit I don’t like is that there is no separate changing room to get ready for the radiotherapy sessions - there is just a small screen to get changed behind (in the same room as the radiation machine and the nurses) and I’m very self-conscious about my hair loss 🧑🏼‍🦲 (only my husband, son and wig hairdresser have seen my head since loosing my hair), so I don’t like the way the nurses can see me swapping between my wig and my headscarf before and after each session (and I have seen a couple of them watching me, as the screen isn’t very well positioned) - I just don’t like the lack of privacy you get.

For some reason I am more self-conscious about baring my scalp than baring my breasts (go figure) 🤷🏽‍.

(When I had my initial CT & Planning appointment in the same place, there was a proper changing room you could use, which felt much more dignified.)

When I’ve been receiving the radiation the nurses place tissue paper over my breasts (including the one being treated) which is kept on during the whole treatment, however, it doesn’t cover my whole treatment area (my collarbone and my underarm aren’t covered).
Do any of you have tissue paper placed over part of your treatment area?

It’s dry today where I live so I’m looking forward to getting out for a nice walk and some fresh air.

Hope you all have a lovely weekend.

🫶🏼💗 xx

[MajesticTiger]

Hi sparkle66, I understand the anxiety - between all the treatments I’ve needed (Surgeries, Chemo, Radiotherapy and hormone tablets), it’s the Radiotherapy that I’ve been most anxious and emotional about so far and the only one that I’ve considered not going through with, mostly because of the potential long-term side effects.

After having a long discussion with my Oncologist, I now have a better understanding of it all and it’s benefit in relation to my cancer.  Just the hormone tablets hurdle to get over next.

Good luck for your start of Radiotherapy treatments tomorrow. 🫶🏼

Hi kitti26, I hope your 1st treatment went smoothly today and you don’t feel too fatigued.  My last chemo cycle was on 5th Jan, so I’m still getting over the side-effects of that, before my Radiotherapy starts this Monday, 23rd Jan 2023.

Hoping radiation fatigue doesn’t affect any of us too much. 🫶🏼

[kitti26]

Hi ,

I started my schedule today too, 10 in total, 5 full breast (right), 5 boost sessions 

Im still feeling really tired & no energy from my chemo that finished 16th Dec

Has anyone suffered with tiredness from radio?

If so, is it as bad as chemo tiredness ?

[sparkle66]

Hi,

yes I start radiotherapy this month, I start on Wednesday this week, five sessions whole breast and five booster sessions

Im feeling quite anxious about it x 

Hope it all goes well for you x 

[MajesticTiger]

Anyone else having Radiotherapy in January 2023?

I had my CT & Planning appointment on 4th and my 3 tattoos were done at that appointment.  
As my cancer was in my left breast, I’ll be doing the breath-hold technique and had a couple of practice runs before doing it for the CT scan.
My Radiotherapy treatments start on Mon, 23rd - 15 sessions to full left breast up to clavicle and left underarm (4-field).

Hope everyones’ treatments go smoothly. 
🫶🏼💗xx