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Radiotherapy Starters Nov 2019

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Re: Radiotherapy Starters Nov 2019

Hi Jubelu,

My skin has been hot and itchy a few times, but the Aveeno cream soothes it. I pulled a stitch out with tweezers the other night. I just couldn't bare it poking out any longer! I think it was the last one. So much for dissolvable stitches! My lumpectomy was at the end of September. 

I had session 7 out of fifteen today. They seem to be getting shorter and my breath holding is getting better. The machine doesn't cut out so much.

All the best for the rest of the week.

RoseRed

Member

Re: Radiotherapy Starters Nov 2019

Hi RoseRed,

 

I always want to hibernate at this time of year! How are your sessions going? I had number 9 put of 15 this afternoon. Normally I'm in and out in about ten minutes, but it was half an hour today. They couldn't get the measurements within the acceptable ranges, so got me off the bed, then on again. And more xrays just to double check. So far my skin seems ok. It gets very hot, and I can see it's changing colour. Been vaguely itchy a couple of times. They gave me a prescription request for some cream - Flam something? - as they don't keep stocks at the hospital anymore. It will take a few days for my GP surgery to process it. Think they are just wanting it to be on hand if necessary. My infection seems to have cleared up ok, but I still have undissolved stitches poking out of the mastectomy scar (from 2nd Sept!). I'm really tired today, though.

 

Hope everyone is doing ok x

Member

Re: Radiotherapy Starters Nov 2019

How is everything going for everyone? Thinking about you all. 

I feel like hibernating!

RoseRed

Member

Re: Radiotherapy Starters Nov 2019

Hi Brumrunner,

 

I've mentioned it to the oncologist and breast care nurse. Letrozole can affect some people like that, apparently. I found a thread on here after doing a search, and it seems I'm not alone. I seem to have it nailed at the moment. So long as I am really mindful about my hydration levels, it keeps it more manageable, though I am drinking more water than I was prior to Letrozole. However, the radiographers are really pleased at how much water I'm drinking. Good for you during treatment they say. Hope your treatment is going smoothly,

Jx

Member

Re: Radiotherapy Starters Nov 2019

Jubelu - just to be on the safe side, would you see your Dr to discuss your significant thirst and weeing?  It can be a sign of diabetes.

Member

Re: Radiotherapy Starters Nov 2019

RoseRed, what a lovely idea. And so symbolic. Love it x

Member

Re: Radiotherapy Starters Nov 2019

So I have this acorn which my daughter gave me when she was small. She's drawn a little face on it. I've taken it to all of my appointments in my pocket, from the start of my journey. An oak tree is strong and when I've finished with all of this, I will plant my acorn and watch it grow.

Member

Re: Radiotherapy Starters Nov 2019

Thanks, RoseRed. I had one student observing - four sounds like quite a crowd. It does sound like a foreign language when they start quoting numbers and words like 'soup' to each other. I got myself into the nearest position I've been yet, today. They still had to get the ruler out, though! And they've put me on antibiotics because part of my scar has become infected and it's right in the firing  line. Oh, well, c'est la vie ... 

Member

Re: Radiotherapy Starters Nov 2019

Hi Jubelu and Kaytee

Just sending you my good wishes and hope that all goes well for you. We'll get through this. 

I had four students observing my treatment today, watching how the radiographers lined me up. I'm learning to keep still and let them do the moving me around.

All the best

RoseRed

Member

Re: Radiotherapy Starters Nov 2019

Oh, Kaytee, that sounds awful ... makes needing to see a dentist for a tooth out seem like a walk in the park. 

Jx

Member

Re: Radiotherapy Starters Nov 2019

Hi Alvilajo,

 

see uv started your radiotherapy today,  all i can say is use your cream and moisturise regularly.  I used my cream 2 hours before radio and again when i was changing back into my clothes.

boob got a little warm so just used a cotton hanky tucked inside my crop top to keep cooler.. worked ok for me 👍

good luck with your nxt one.

mini mad xx 💖💖

Member

Re: Radiotherapy Starters Nov 2019

Hi jubelu 

Sorry your having such a rough time, hope all goes well with the BC nurse and dentist :-(

I lost a fingernail yesterday which totally freaked me out!!  Think I may loose a few more yet :-(

 

Had 1st rads today, 14 to go :-)

 

Best wishes everyone xx

Member

Re: Radiotherapy Starters Nov 2019

I'm not 6 this afternoon, out of 15. Not having the axilla treatment as on the posnoc trial. Have a very angry sore patch on one of my scars - it's not going to last the course without breaking down. Will mention this afternoon, but depends which team is doing the treatment as to how approachable they are. Seeing my breast care nurse tomorrow, though. She's going to check out a new lump in my mastectomy site, too. And I have an emergency dental appointment tomorrow morning! Have lost a massive chunk of tooth. Another part of my body to dismantle! Rather fed up of it all. Sorry to moan ...

Member

Re: Radiotherapy Starters Nov 2019

I’ve just had my first 1, 19 to go xxx

Member

Re: Radiotherapy Starters Nov 2019

Hi

I've got my fourth session this afternoon. My skin gets hot and a bit itchy, but applying the cream helps. I'm covered in permanent pen marks.

All the best.

RoseRed

Member

Re: Radiotherapy Starters Nov 2019

Hello

 

How are you all doing?

 

I've had by 11th rad today, keeping up with the drinking, creaming and exercises! Have a little pinkness and some aching in my shoulder which ibuprofen is sorting out, apart from that no other side effects so far.

 

Keeping going ladies

 

Helly xx

Member

Re: Radiotherapy Starters Nov 2019

Thanks for the advice Helly, and sorry for the late reply. 

 

I got through the first week ok but had a hard weekend with pain. Skin is actually doing ok using the creams they’ve provided. But my boob is so hot so having to think through my outfits so they having ventilation (thankfully I’m well stocked with baggy cardis!).

 

I was meant to start tamoxifen (10 years too) but surgeon and oncologist ended up saying to wait til after radiotherapy and to be honest I’m glad as hot flushes, hot boob and no deodorant doesn’t sound like a great combo! 

Hope everyone is getting on ok? 

Member

Re: Radiotherapy Starters Nov 2019

I specifically asked one of my radiographers about breath holding, as my mastectomy was on the left side and that's where I'm having treatment. She explained how they decided who it would be beneficial for, but then said they don't do it at all at the hospital looking after me. 'Unfortunately', she said ... How to inspire confidence!

Member

Re: Radiotherapy Starters Nov 2019

Hi all, I start my radio therapy and hormone therapy Thursday. My biggest fear has always been the hormone treatment. I’ve bought some thermal vests for radio therapy, I too have to hold my breath vic xxxx

Member

Re: Radiotherapy Starters Nov 2019

Hi Katy

I started my radiotherapy today. It's natural to be nervous. Everyone was lovely and talked me through everything. I had to breath hold and my mouth got really dry, which I think was nerves. I could hear the machine cutting out, but the radiographer said I'd done well. All the best for Thursday.

Member

Re: Radiotherapy Starters Nov 2019

All the best, Katy. I was a bit of a wreck for my first one. The second was much easier and I'm fine about this afternoon's. I'm sure the radiographers will be lovely and put you at ease. I can't say I'll ever get used to the constant stripping to the waist throughout this whole process, makes you feel vulnerable, I think, especially if you haven't got your head round the scars and no breast part, but the staff I've encountered have all been so respectful and professional, whilst being compassionate at the same time. On other parts of the forum, people say the days fly past during radiotherapy, so I'm trusting them!

Hugs,

Jx

 

Member

Re: Radiotherapy Starters Nov 2019

Hope your treatment goes well.

I start mine thursday. Starting to get a little nervous now, but this part will soon be over.

Best wishes x

Member

Re: Radiotherapy Starters Nov 2019

Hi Katy,

Yes, the thought of more surgery is daunting, especially when it's gone so wrong first time (mine did), but I can't imagine ever getting used to, or accepting that this is my body for the rest of my life. Perhaps I will change, but can't imagine that ... Still early days, I guess. And who knows what the site will be like once radiotherapy is over ... Just getting through these endless days at the moment. Hope your treatment is going ok. I have my third session later, was expecting it to be number six, but they delayed the start. At least I have three weekends' respite from treatment now instead of just two. Perhaps that will give my skin more time to recover as the treatment progresses.

J x

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Member

Re: Radiotherapy Starters Nov 2019

Hi jubelu

I have not decided of i am going to go for reconstruction yet. I don't like being flat on one side but at the mo the thought of more hospital trips and surgery out weighs the benefits.  Of course, this may change in the future, if things ever get back to normal.

Katy x

Member

Re: Radiotherapy Starters Nov 2019

Hi Katy, 

 

Yes, I've been draping scarves on top of my baggy jumpers - looses cotton shirt underneath. I want to do everything in my power to kep the skin as in good nick as possible, as I want to have a reconstruction. Can't imagine the rest of my life like this.

 

I started on Letrozole seven weeks ago and the side effects have just started to surface. Hoping they will settle. You may not get all, or even any Tamoxifen side effects - you never know ...

J xx

Member

Re: Radiotherapy Starters Nov 2019

Hi All

 

Jubelu, I was wondering whether it might be more comfortable to go braless during treatment. I also had a mastectomy so without my softer it is obvious that my boob is missing! I have got a very nice crop too bra with pockets which is very comfortable so might try that, but will be going with comfort. At least with it being winter I have a nice lot of large cardigans I can wear!  I start rads next thursday.

 

Helly, they started me on Tamoxifen this week. The list of side effects is horrendous, and I was hoping not to start until after rads, but i have got to trust the drs that this is the best way forward. 

 

Best wishes

Katy

 

 

Member

Re: Radiotherapy Starters Nov 2019

Had my first round today ... The radiotherapy dept at my local hospital looks as though it should have been demolished decades ago. There is a new, state of the art one planned, but ground hasn't been broken yet. It's a depressing place, but the staff are absolutely lovely, so that makes a huge difference. It must be horrible for them working in surroundings like that.

 

On a slightly different note, the advice I have been given is to go braless much as possible. I ended up with a mastectomy and have so far worn a post surgery bra and softee night and day. I now cannot even pretend I'm not a woman with one breast. And cancer. Just hope it all works ...

 

 

Member

Re: Radiotherapy Starters Nov 2019

Hi everyone

I went to look around the Cancer Centre yesterday and we were shown all of the machines. It looks very space age. I couldn't believe how huge the doors to the treatment room were. They answered all of my questions and showed us a power point presentation.  

Thinking about all of you who've started your treatment. My first session is next Monday.

Member

Re: Radiotherapy Starters Nov 2019

Hi everyone

 

Sorry to hear of your CF/ME problems, I hope you are getting the help and support you need?

 

I hope your cold sores heal soon, they are nasty things, I take L-Lysine when I get them and that relldy helps me, GP has given me anti-virals tablets in the past when I have had bad ones.

 

I've had 6 radiotherapy sessions now and I'm a little tired but I think thats because I'm still recovering from my last chemo on 23rd Oct, stuggling to get a good nights sleep for the hot flushes and the early mornings!

 

I have started to feel some discomfort in my boob and shoulder already, so I'm making sure I keep up with the fluids, cream and the exercises.

 

Are any of you going on to have hormone therapy? I should be going on to Tamoxifen for 10 years, I think they will start this once radiotherapy is done, I have a review on Dec 2nd with the chemo oncologist.

 

Love Helly

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Re: Radiotherapy Starters Nov 2019

Geewhiz, I too have ME/Cfs, which is already debilitating, so not looking forward to the added fatigue I'm anticipating. And I developed a cold sore this week - haven't had one for years. Will keep you posted. Hope The weekend brings you some respite and recovery. X

Member

Re: Radiotherapy Starters Nov 2019

Hi all

 

I’ve had 3 sessions now, I was hit with tiredness straightaway (although I have chronic fatigue so not exactly starting from a great place!). I’ve been resting up but I’ve had cold sores (yes plural!) come up today. Anyone else had this from radiotherapy? 

Thanks,

 

Gee

Member

Re: Radiotherapy Starters Nov 2019

Hi Ruthie2,

 

I had two +ve nodes out of three, but am on the posnoc trial (1 or 2 sentinel nodes positive is one of the criteria that makes you eligible, and trial not done everywhere), so not having any treatment to the nodes or axilla. Think I'm right in saying not everywhere does the surgical option. At my hospital (as if it's just mine 😀), they do radiotherapy rather than surgery. I think. The result is effectively the same, I believe ...

 

Hope your treatment goes smoothly. Driving yourself must be extra stress xx

Member

Re: Radiotherapy Starters Nov 2019

Hi Rosered,

 

I asked about the breath holding at my planning appointment, as it's my left side. They don't do it at my centre apparently ... My first treatment was supposed to be Monday, but they have postponed it until tomorrow afternoon with an appointment with the oncologist first. So, will see what that's all about ...

 

Hope everyone's got off to an easy start xx

Member

Re: Radiotherapy Starters Nov 2019

Hi RoseRed

 

I am doing the breath holding as left side affected. Had my fourth session today and seem to be doing okay with it. 

Hope everyone else is doing alright x

Member

Re: Radiotherapy Starters Nov 2019

Hi all,

been for my planning appointment today so can join in now.

ive been told I should breeze thru this as I sailed thru chemo apparently (can’t say it felt like it at the time!) so fingers crossed!

having 3 weeks of rads to boob, axillia and up to collar bone as had 3/4 positive lymph nodes. Wasn’t keen on another surgery so have opted for the extra rads as was having them to the boob anyway. I’d be really interested not to mention reassured if anyone else was doing the same as everyone I talk to does the sharp intake of breath and tells me they’d have the surgery or else have had the surgery and would recommend it over rads. 

 

its my left side so was worried I hadn’t been told to breath hold but it turns out it’s because I’m having 3 areas done and I wouldn’t be able to hold my breath long enough.

nothing mentioned about moisturiser to me and I forgot to ask!

 

i did feel and still do,

feel way more anxious about the rads than I ever did about chemo which is strange, it didn’t help having to drive round for 20 mins to find a car parking space but I’ve no alternative to driving myself, usually straight from work. 

hoping everyone is doing well with minimal side effects xxx

 

 

 

Member

Re: Radiotherapy Starters Nov 2019

I hope that you are all getting on okay with your treatment.

Does anyone have to do the breath holding technique? How are you getting on with it? 

 

Member

Re: Radiotherapy Starters Nov 2019

Thank you, Kaytee. I have an appointment woth the oncologist Thursday afternoon and then, all being well, will have my first session straight after. X

Member

Re: Radiotherapy Starters Nov 2019

Thanks ladies

I have purchased some Aveeno cream but will discuss with the rads team on the day just to be sure.

Jubelu hope you get your question answered soon and all is well x

Member

Re: Radiotherapy Starters Nov 2019

When I had my planning appointment I was advised just to keep using what I normally use - Nivea 48hr - and not to use bio oil, as too much oil can make a barrier for the radiotherapy. I was due to start today, butvask2d a question of my breast care nurse last week. She said she would ask the oncologist. He rang me today and said he would need to confer with his colleagues at a different hospital, so I am now seeing him on Thursday with a new start date then. Might just be me, but there have been delays all.along the way. Don't feel too bad about this, though. Just intrigued as to why there wasn't a straightforward answer. But I am impressed they are taking so much care with my question.

Member

Re: Radiotherapy Starters Nov 2019

Hi Katy

 

I just bought 'Simple' shower cream and Aveeno from the supermarket following advice I read here (advice seems to be there are no added nasties or perfumes in these), I think some hospitals provide creams so you could wait and see what they say on your first appt and then buy some on your way home.

 

I have only been told to drink plenty - 2 litres every day, moisturise twice a day all over the affected boob, shoulder and back as the rads penetrate and you dont want any skin breakdown, also they said dont scrub or rub skin, just gentle showering and dab with soft towel to dry - it does appear from reading that each hospital has slightly different advice.

 

Helly xx

Member

Re: Radiotherapy Starters Nov 2019

Hi all

Some advice please.

I totally forgot to ask about using moisturisers and for general skin care advice during/after treatment at my planning appointment.

I see some of you are recommending aveeno, is this just over the counter from chemist or prescription?

What else have you been told?

I will ask at my first appt next week but would like to be prepared :-)

Thank you

Katy

Member

Re: Radiotherapy Starters Nov 2019

Thanks for the advice, Helena. I am already drinking more than 2 litres a day, mostly water, due to letrozole side effects - well, that's what I'm putting my increased thirst down to. Can't imagine physically getting more down me! And I'm up every two hours of the night ... Will try the fridge tip ... x

Community Champion

Re: Radiotherapy Starters Nov 2019

Geewhizz

 

I had the same, 15 regular and 5 boosters, that was three years ago next month . Once you get the first one over they are not as long. Just make sure you take in plenty of fluid during the day they said a good 2 litres a day, it really does help with the dehydration effects you might experience from it. I also used to take a little tub of my moisturiser with me and apply it when i was getting dressed afterwards. Also keep it in the fridge as it is lovely and cooling.

 

Helena xx

Member

Re: Radiotherapy Starters Nov 2019

Thank you for your replies Helena, Helly and Jubelu, I really do appreciate it.

 

I have 20 sessions including boost ones. I had a therapeutic mammoplasty after they removed the tumour so my scars run right across where the underwire or band of a bra runs and then up to my nipple. Essentially where the bras gather and pinch is the t-junction where the scars meet and it’s fragile there. It still hurts to move so as much as I hate the sports bras they serve a purpose. 

 

I was a 36dd but am wearing a 40b for comfort but have got some xlarge crop tops from Primark that have cups in them that might work so I’ve got a few options. And plenty of moisturisers too. 

 

Hopefully tomorrow/this month will be ok for us all. Fingers crossed 🤞🏽

 

Thanks again xx

 

Member

Re: Radiotherapy Starters Nov 2019

Hi all and welcome Geewhizz,

 

I followed the bra advice post surgery which was to have post op/sports bra's, but being a 32G found them very uncomfortable and the sports bra challenging to zip up at the front to say the least, in hind sight Im certain that my original bra's would have been perfectly fine although underwired as they are very supportive. I had lumpectomy and sentinal node removal mid June, and with the tumour being high in the breast the incision runs around the top of my nipple - so very neat you can hardly notice now. There is no way I could manage in crop tops, I could take somebody's eye out with my cleavage if I let them loose!!

 

The radiotherapy team I am seeing have not mentioned anything at all about bra's, the only things I have been told I must do is be gentle with the skin ie dont worry about trying to scrub their daily pen marks off, moisturise twice daily (I'm using Aveeno) and drink at least 2 litres of water every day to stay hydrated and also help with fatigue. 

 

I am also very much looking forward to getting to the end of active treatment - roll on 4th Dec! I have tried not to do this but in all honesty the final 3 rounds of chemo have been challenging and I just want to get on with getting 'better' now.

 

Thinking of you all

Helly xx

Member

Re: Radiotherapy Starters Nov 2019

Hi Geewhiz,

I wrote a reply to your post, but it seems to have disappeared. Like you, I'm starting tomorrow. Not looking forward to implementing the no bra advice, but for different reasons. The most comfortable ones I have are also the cheapest - two for £15 from Asda. I ordered mine online. They come in small to extra large, so maybe going up a aizexwould be more comfortable. The band is deepervthan my usual bras and sits lower. I'm sure your team will give you good advice tomorrow. Hope all goes well. I'm doing what my mum always told me not to do - wishing my life away - and just looking forward to it being over. X

Community Champion

Re: Radiotherapy Starters Nov 2019

Geewhizz

 

I too found it uncomfortable wearing sports bra post op, i think it depends a lot on where your scar is, so i took the bones out of one of my bras which worked for me, i also got a couple of lovely no wired support bras from M&S.

 

Good luck in Monday, how many sessions are you having.

 

Helena x

Member

Re: Radiotherapy Starters Nov 2019

Hi everyone 

 

I’ve only just signed up to the forum, I hope it’s ok to tag onto this thread. I start my radiotherapy this Monday (hopefully as long as my seroma doesn’t reappear). I noticed that the advice was avoid or not to wear a bra/ wear crop tops, but my surgeon wants me to wear sports bras day and night still due to the ongoing seroma issue (and boy do I hate the sports bras as the band cuts in!). I had asked lots of questions to prep but this issue had never come up so now worrying about it (although quite possibly just to distract myself). Any ideas?

 

I hope for those of you that have started it is going ok with no effects, and good luck to those like me about to start xx

 

Member

Re: Radiotherapy Starters Nov 2019

Hi Hope62,

 

Glad your first session went well and that you feel so reassured. Here's to the rest going as well. I have my first session on Monday afternoon, last on 29th Nov. Feeling better about it today than I have been. It's lovely to read positive experiences.

Jubelu xx

Member

Re: Radiotherapy Starters Nov 2019

Hello everyone, I had my first session yesterday. The staff were lovely and explained what was going to happen. Also went over skin care and looked after me. It was over before i knew it. Next session Monday. 

Have a great weekend x