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Anyone waiting to start radiotherapy?

44 REPLIES 44
catt57
Member

Re: Anyone waiting to start radiotherapy?

Hello Boston,

thank you for the information is just I haven’t heard of it and was just curious as to what the drug was used for.

 

thanx Catt57

Boston
Member

Re: Anyone waiting to start radiotherapy?

Hi - Tamoxifen is hormone therapy and is used to treat hormone receptor positive breast cancer. 

Hope all is well xxx 

catt57
Member

Re: Anyone waiting to start radiotherapy?

What is  Tamoxifen   or whatever my spelling is really bad lol, any way what is this drug used for and dose everyone on radiotherapy get this to take ????

 

 

Thanx Catt

catt57
Member

Re: Anyone waiting to start radiotherapy?

Hi Jan, 

I don’t know what they have planned for me I will be back at the hospital to get my self tattooed etc, and just go with it I guess lol, I bought myself some Aveeno to help with my skin after I’ve had a session just wish it was all over and done with . Hope you are recovering well.

 

Catt

Boston
Member

Re: Anyone waiting to start radiotherapy?

Hi Catt

Two operations - I hope you are taking it steady now.

I had the fast track radiotherapy (over 5 days only), do you know if that is what you will be receiving? 

Jan 

Boston
Member

Re: Anyone waiting to start radiotherapy?

Hi Jane

Remember any questions or queries are likely to be answered by you nurse too.  I also found my oncologist very helpful.  I emailed his secretary with a couple of questions and within two days he called me back - which was very lovely.

 

I have a bit of a darker breast now where the radiotherapy has been targeted and I can clearly see a line - which is quite odd but in the whole scheme of things, I really don’t mind.  The pain is getting less and is more of a burn within the breast rather than a sharp pain.  But totally manageable right now. 

Back to work tomorrow which I am nervous about but let’s see.

 The future is looking good.

Rest up yourself and I will be thinking of you.  Please remember you can call the nurse  anytime and I am pretty sure you will feel better afterwards.

Jan xxx 

catt57
Member

Re: Anyone waiting to start radiotherapy?

Hi yes I’ve had 2 ops and now I’m waiting to see when I start radiotherapy, I had my last op on the 5/2/2021 🤗

PurpleGranny
Member

Re: Anyone waiting to start radiotherapy?

Hi Jan,

It must be quite difficult to tease out the side effects of the radiotherapy from those of Tamoxifen.  The sharp pains in your breast and the exhaustion are what I have been warned about with radiotherapy.  Perhaps the others are Tamoxifen - not sure how long they take to kick in?  Have you noticed the radiated area turning red and swollen (something else they warned me about)?  Anyway, all very difficult when you are trying to work.  Are you in the position where you can work part time for a while to cope with all this?

I am self employed, working from home, so fortunately I can fit everything around appointments and treatment.  My clients have been very understanding and supportive.

My (telephone) review is scheduled to be after my 4th treatment, so not sure how they can change anything at that point, but I will store up questions to ask them.

I hope you start to feel much better soon.

You too stay safe!

Jane xx

Boston
Member

Re: Anyone waiting to start radiotherapy?

Hi Jane

don’t worry about the flinching, I’m sure you are not alone in that.  

You will have plenty of opportunities to ask questions and get everything right in your head when you go.  I found my radiographers really helpful.  Also I had a review half way through with my oncologist and with the rads team.  I found I had more questions as the week went on. 

Tamoxifen has been ok.  I am getting tired at the end of the day and fairly emotional so I am not sure if that is the rads or the Tamoxifen.  Hopefully it will pass. 

I have some sharp pains within my breast which is to be expected.

A few new niggles across my body including headaches.  I am hoping it settles down.  I am back at work next week.  I don’t think I’ll be bringing much to the office if I feel like this!

stay safe

jan 

PurpleGranny
Member

Re: Anyone waiting to start radiotherapy?

Hi Jan,

Today was OK thank you, once I had managed to find my way through the warren of the hospital to the parking office.  I was following signs to it and then there were no more signs ......!  Eventually someone took me to it only for it to be closed between 1 and 2 (it was 1.30) and being told to go to the Post Room, with no directions as to where that was.  Found my way eventually and sorted that out but it was just added stress that I could have done without.

The actual session went fine except when I flinched at the first tattoo - didn't mean to.  Not sure I took in everything they were telling me and unfortunately I didn't write things down, which I usually do.  I only had to undress the top half so didn't get too cold.  I'm to have just 5 sessions starting on 1st March.  Just want it to be over.

I'm glad you are getting on OK with Tamoxifen.  Frankly I'm not looking forward to the SEs of Letrozole but needs must to keep the devil at bay!

Having my Covid vaccination tomorrow which I shall be glad of.  Anything to reduce the general anxiety I wander around with.  I have been very worried with all the appointments I have had in hospitals and about possibly catching it there.

Have you now finished your treatment, except for Tamoxifen?  It must be a weird feeling!

Speak to you soon,

Jane

 

Boston
Member

Re: Anyone waiting to start radiotherapy?

Hi Jane 

I hope your appointment went well today and you have all of your concerns addressed.  Hopefully you feel

much happier about it now.  Odd thing to say I know!  

The radiographers placed my jumper across my legs to help keep

me warm - which was very kind.  They said they could see me shivering on the camera! The temperature last week outside was a bit extreme and unusual! 

I am on Tamoxifen have been taking it for 4 days - so far no side effects.

When do you start radiotherapy and are you on the 5 day treatment plan?  
talk soon

Jan 

PurpleGranny
Member

Re: Anyone waiting to start radiotherapy?

Hi Boston,

Thank you for your lovely long informative post.  It has helped take some of the worry out of it for me and made me a bit less anxious.  My planning appointment is tomorrow and I suppose it's always a slight fear of the unknown.  I don't know the hospital at all, they have a complicated scheme for giving you a discount on parking that involves filling in forms and finding a parking office somewhere on the site, getting a permit, buying tokens and going back to the parking area and getting a ticket which is left on the dashboard with the ticket!  Then, because of Covid, I have to phone reception from my car and wait until they call me in.  Not relaxing!

However, after your post, I feel a lot more prepared for what happens next.  My problem might be staying still for all that time.  I have post nasal drip (lovely name) and lying on my back for that time will probably make me feel as though I am suffocating unless I.  Have been taking a decongestent to try and stop that worry. I have bought some Aveeno Cream and intend to anoint the affected area frequently.  My written instructions are also to drink 2 litres of fluid a day, which I might find quite difficult. 

How did you manage to keep warm for your subsequent sessions?  I do hope you have now finished your treatment and that it has been successful.  Are you going to be on Tamoxifen or one of the aromatase inhibitors?

Best wishes,

Jane xx

Boston
Member

Re: Anyone waiting to start radiotherapy?

Hi Jane - sorry you had to go through that procedure twice.  Once is difficult enough but great news about clear nodes and great news that you are about to start radiotherapy.

 I found the planning meeting a bit stressful but it was mainly because I was still working at the time and didn’t give myself the time off to absorb the information and the process. So please do give yourself time before and after.  It’s lonely because of Covid but I felt I was just squeezing my treatment plan into my working day. 

The radiotherapy sessions have been all straight forward - yesterday I did get very cold whilst lying around but also nerves probably kicked in!  
There is nothing to worry about - promise.  

Its basically the same as the planning session.  Just shorter.  I think I was in for a max 30 mins. 

The planning session involves marking you up which doesn’t hurt at all.  During my planning session we also practiced some breathing techniques (because my targeted area is on my left side where your heart is).  The breathing in and holding technique moves/separates the breast tissue from the heart so they can ensure they target the breast tissue and avoid the heart.  They talk you through it and are always on the tannoy.  

They also went through any questions I had and discussed suitable creams.  They haven’t recommended a particular brand but did mention e45 to me.  Non perfume is a must. I think other trusts  do recommend and even prescribe a moisturiser. 

For the X-ray and treatment, once you meet the team (3 in mine so far).  
Once undressed, top half only ☺️and I get comfortable on the bed.  My arms are placed above my head and are rested in cups to keep them in place. It is quite a long time to sit still with your hands above your head (for me as I am a fidget)  but keeping still is obviously key - keep up with your exercises ☺️  
They wriggle you about and line you up to the machine and your markers as they did in the planning meeting, then tell you everything is set up and they are leaving the room.  
Then they talk you through anything you practiced (for me the breathing) then they zap you.  Both sides for me.  It’s odd hearing the machine moving and nobody being in the room.  It’s a relief when they say something over the tannoy for sure!  Even better when they say - great all done for today 😄. But I can honestly say it does not hurt.  I haven’t had any red spots or soreness yet either - early days I guess. 
I hope this helps a bit? 
Good luck 🤞 I wish you all the best and a speedy recovery.  

PurpleGranny
Member

Re: Anyone waiting to start radiotherapy?

Hi Boston,

I was diagnosed in October with Grade 2 invasive ductal  E+P+HER-, no positive nodes, and had a lumpectomy on 29 October.  I had to have a re-excision to get clear margins which for one reason and another was delayed until 5 January.  I am now due to have my planning appointment next Monday, with the  5 day sessions starting 2 week after that.

How did you find your first session and what sort of information have you been given about it?  I am concerned about being able to lie completely still as have had a fair amount of shoulder pain although can do my exercises alright.  Have you been given special cream by your radiotherapy team?

Jane xx

Boston
Member

Re: Anyone waiting to start radiotherapy?

Hi - I hope you are recovering well from surgery.

 I had a lumpectomy in December and started radiotherapy yesterday.   I am on the 5 day treatment programme.   Had my tattoos on the 26th January in prep for the radiotherapy.   

murnaloo
Member

Re: Anyone waiting to start radiotherapy?

Hi everyone,

I started radiotherapy yesterday, so I've had two of five sessions already. I'm glad to finally start so we can zap any wayward cells.

However, I can't stop worrying about the length of time between surgery (lumpectomy) and starting radiotherapy. It was 10 weeks, which seems much longer than what the NHS standard is. I had stage 1, grade 1 ER/PR positive, so no chemo needed. I'll start Tamoxifen post-radiotherapy. I am fit and healed from surgery really quickly. I did have to wait on genetic testing results before radiotherapy could start, but it's been a month since I got those results.

Should I be concerned that it's taken too long to start radiotherapy? I read several studies that said waiting more than eight weeks before radiotherapy after surgery is linked to worse outcomes. My breast care nurse said she is not worried, but I still feel anxious.

Just wondering what others have been told.

TUL24
Member

Re: Anyone waiting to start radiotherapy?

I'm having my planning appointment on Friday and will be starting radiotherapy mid December.  I am having my lymph nodes on the right side of the neck targeted.  Looking forward to sailing through this part of my treatment, because chemo was bleurgh!

anmarj
Member

Re: Anyone waiting to start radiotherapy?

Thank you, been given start date of 26 November, couldn’t face the tattoo, so have three bright blue crosses with patches over, hubby can top up with pen. 

phobia re hospital right up, just want this to be over, i have a shoulder issue and boy it was painful moving it down.

Sparkle54
Member

Re: Anyone waiting to start radiotherapy?

Hi anmarj,

I finished my radiotherapy mid Sept.It really wasn't as bad as I thought it may be.Only takes about 15 mins.Some hospitals give patients cream to use on their skin mine didn't I used E45 and have been fine with that. You don't normally get tired until 3-4 weeks after you finish rads and your skin may red a bit itchy a few weeks later. My tiredness kicked in last week but I am also back at work now so that adds to it.

Hope it all goes well for you.

Take care

 

anmarj
Member

Re: Anyone waiting to start radiotherapy?

Hi, i have my ct planning tomorrow, very scared. I got diagnosed at end of april, started chemo three weeks later, had surgery at beginning of October. I had stage 1, grade 2 invasive dutal cancer. Had little information and support from breast clinic. Had been told when i went for results that radiotherapy would start January, but I am not the only one who got told this! This man also told me i have three rounds of chemo, surgery in august and homeworking till September! Turns out that was a load of tosh! Also been put on tamoxifen for 10 years.

i have ordered some aeevo cream, although i do use the forever living aloe vera cream but have a feeling i am not going to be able to use it.

cfan garden
Member

Re: Anyone waiting to start radiotherapy?

Hi, I am starting radiotherapy in the beginning of Sept. I am a little apprehensive about it. This is my second go round with DCIS. First time I only had the lumpectomy, that was back in 1994. Now it seems I am almost getting the works. I had my lumpectomy, same breast almost same location. I have been prescribed letrozole and radiotherapy. I am trying to be upbeat and positive for the most part. My medical team is fantastic. So I forge ahead and keep my eye on the prize. Keep positive and surround yourself with loving friends.

Sparkle54
Member

Re: Anyone waiting to start radiotherapy?

Hi,

My lumpectomy is this Friday, I finished a course of 6 chemo sessions early July and am expecting to start radiotherapy in Oct not sure how many as that will depend on lumpectomy results.

Have you been advised of dates and number of sessions yet?

Hope your enjoying the weather.

Take care

Nat

LouJP
Member

Re: Anyone waiting to start radiotherapy?

Hi all

Just read all these with interest.

I had lumpectomy and lymph removal on 13th July.

See my oncologist 18th aug to discuss radiotherapy.

I expect 5 sessions.

Been warned about skin - already have medihoney and fatigue.

That should be the end of the 9 month journey - diagnosed 3rd january but know the journey doesnt really end there.

So good to listen to everyone's stories

Good luck

xx

Anjon
Member

Re: Anyone waiting to start radiotherapy?

I finished my rads yesterday after a 5 day course. I have a swollen and hot breast but no fatigue as of yet, my skin so far apart from looking pink seems ok. I was told that my skin may worsen before it gets better, expect to peak in 5 days. The heat is the only thing really bothering me and I've been applying watergel r1 and r2. My radiography team all said to use whatever cream I currently use as my skin is used to it. Didn't have to shield before or whilst having treatment but was sensible with the run up to it.

MaggieG
Member

Re: Anyone waiting to start radiotherapy?

Hi 

I completed my radiotherapy on Tuesday and I’ve got a tender swollen reddened breast don’t feel too fatigued thank goodness 

I’m using Epimax cream three times per day and using simple soap I am not shielding nor was I told to by my trust in Scotland I’ve been using my common sense re not going to pubs etc and the usual Covid precautions but that’s all 

Good luck with your treatment xxxxx

mmstocker
Member

Re: Anyone waiting to start radiotherapy?

Hi 

I start mine in 17th. I’ve not been told to shield/self isolate... I have been told that I can go to work! 😊

YNWALFC
Member

Re: Anyone waiting to start radiotherapy?

Hi 

Hope you doing ok. I'm in the same position waiting for a date.  I've also been given different advise about shielding during radiotherapy.  One breast cancer nurse says we dont have to but another one today have just said the whole house will have to shield throughout my treatment. What advise have you been given. 

Thank you x

tmmorriss
Member

Re: Anyone waiting to start radiotherapy?

Hi MaggieG,

I’m pretty sure they’ve been given the wrong advice but I’d check with your team just to be on the safe side. I had the 5 days radiotherapy reduced from the original 15 days. I’ve got a 5 year old daughter and I was told I’m perfectly safe so she’s had lots of hugs and cuddles. 

It’s been over 2 weeks now since I finished radiotherapy and I’ve been lucky with my skin reaction. My breast is a bit pink and slightly tender to the touch in places. I applied flamigel RT 3 times a day (once I’ve had the radiotherapy each day) and for 10 days afterwards. I was given it on my first day of treatment and a pamphlet and information sheet at the end on aftercare and what to expect afterwards. 

Good luck to all going through radiotherapy 🌈🌹💖

Tracy 

MaggieG
Member

Re: Anyone waiting to start radiotherapy?

Thanks for your reply 

I didn’t think about the fast forward aspect but will look into it

Best wishes xxxx

bonbonboosh
Member

Re: Anyone waiting to start radiotherapy?

Hi MaggieG,

What an upsetting situation, I'm so sorry.

I've just done some checking through the literature I've received from the hospital, and from a practical point, there are multiple forms of radiotherapy. The main ones being internal and external. If you were having internal (which you'd know about because they'd insert something), then no you wouldn't be able to go near babies, puppies, etc. But for external (which I'm having and I think a lot of people have for breast cancer) you're fine around children. My pamphlet categorically says "does not make you radioactive and is perfectly safe for you to be with people, including children". 

As you're fast forward maybe it's worth speaking with your team just to double check it's the same? Or maybe phone the breast cancer now helpline while they're open this morning?

I'm sorry, this must feel like a kick during a tough time.

Sending lots of love xxx

MaggieG
Member

Re: Anyone waiting to start radiotherapy?

thought I was doing really well with my fast forward treatment A relative had a baby a few days ago said I wanted to go to visit at weekend I was advised that I would be radioactive through advice they had been given by a health care professional I’m upset and dismayed that I’ve been treated like this Needless to say I won’t be visiting now Any thoughts folks xx

mmstocker
Member

Re: Anyone waiting to start radiotherapy?

Hi.. exactly the same for me just waiting for appointments. Been told 1 week of it not 3, which is good to hear. Hope it goes well.  x

sarahfrjo
Member

Re: Anyone waiting to start radiotherapy?

Hi mmstocker, 

I had a lumpectomy with breast reduction in late June and like you am awaiting a date for planning scan and to start rads! Just want it to start now!! 

Shi
Community Champion
Community Champion

Re: Anyone waiting to start radiotherapy?

Bonbonboosh ❤️ Pace yourself during rads and listen to your body you might find you have a few more naps during the day 👍 check with your team if they have not already given you instructions about creams my unit didn’t want any deodorant or anything on the skin when they did the rads, ok to slap it on after but not before 👍 you will be surprised how quick the 18 sessions whizz by, there is usually a monthly rads thread, do you might join up with others due to have rads too 👍 but we are here 👭 as are 1,000s of others are cheering you on 👍💕💕Shi xx

bonbonboosh
Member

Re: Anyone waiting to start radiotherapy?

Hello everyone, 

It's been great to read through the thread so far. Thank you tmmorriss and Shi for the advice!

I start radiotherapy 3rd August for 18 sessions.

I’ve started moisturising now just in case it helps!

I hope it goes well for everyone, and hopefully we can virtually keep each other in company 🙂

Jen x

mmstocker
Member

Re: Anyone waiting to start radiotherapy?

Thanks for the info, sounds like it went ok. It’s so nice to be in contact with others going through the same.  x

tmmorriss
Member

Re: Anyone waiting to start radiotherapy?

Hi mmstocker,

I’ve just started radiotherapy today. I’m having 5 days of treatment as opposed to the original 15 that were planned due to covid. I had 2 lumpectomies in January (margins not clear in 1st) followed by chemotherapy and now radiotherapy. 
I met with my radiotherapy consultant at the end of June so had a chance to ask any questions. I found the Breast Care Now radiotherapy pamphlet really useful too. I was given a small information leaflet to take away after meeting my consultant too. 
I had a ct scan planning meeting last week where I had 3 small blue tattoos to make sure treatment is lined up in the same position each time. I must admit I was terrified beforehand but the nurses were lovely and helped put me at my ease. 
I’ve just had my 1st radiotherapy session today and been given flamigel to apply 3 times a day to the breast being treated. 
I’m happy to answer any questions you might have. 
 

MaggieG
Member

Re: Anyone waiting to start radiotherapy?

Hi 

Good luck to you too hope you don’t have to wait too long xxx

mmstocker
Member

Re: Anyone waiting to start radiotherapy?

Hi Shi, thanks for the tips, and the feedback. Just reassuring to connect with others going through the same or who have been through the same. x

mmstocker
Member

Re: Anyone waiting to start radiotherapy?

Hi MaggieG, good luck I hope it all goes well.  I am waiting to see when mine starts. x

MaggieG
Member

Re: Anyone waiting to start radiotherapy?

Hi 

I’m started my 5 day fast forward radiotherapy on July 29 got my Planning scan yesterday Still feels quite surreal but I want to get started With my treatment although I’m apprehensive I know it’s for the best xxx

Shi
Community Champion
Community Champion

Re: Anyone waiting to start radiotherapy?

Hi mmstocker ❤️ For rads, keep hydrated during rads, it helps with fatigue, keep best top with no seems on rather than bra, loose scarves dangling down front camouflage the fact no bra on, try and wear loose kaftan round the house so you can get air to skin as much as possible. Creams that lots of us have used to slap on to help with the sizzle have been moo goo, Aveno, e45, dr organics tea tree and aloe Vera gel. You go with what suits your skin, there are no right or wrongs, you team will keep eye on your skin and they have medi honey (I think it was some ladies are given if required) try and pretend you are on a sun lounger in a nice sandy beach (that’s what i did) and saw the machine as extra dr making me better ❤️ Hope this helps, there is always the someone like me option on here and you can speak to a nurse, please use the number at the top 💕💕Shi xx

mmstocker
Member

Re: Anyone waiting to start radiotherapy?

Thanks 😊 

ZoeK_BCN
Community Manager

Re: Anyone waiting to start radiotherapy?

Hello mmstocker,

Thank you for your post.

I am sorry you haven't had any response yet. I am hoping my post will help our members to see it and share their advice or experience.

You can also post your message on to Going through Breast Cancer Treatment where it will be easier for the members to notice it.

Sending you our warmest wishes x

mmstocker
Member

Anyone waiting to start radiotherapy?

I’ve just had a lumpectomy last week. Is anyone here in the same boat and waiting to start radiotherapy?