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starting radiotherapy

49 REPLIES 49
Butterfly318
Member

Re: starting radiotherapy

Morning Claireglen.

 

I reckon minding1yr old Grandson (gorgeous as i am sure he is) and taking Mum to hairdressers are exhausting enough with having had the Radiotherapy. It is difficult becasue we all want to / have to carry on as normal for everybody else.

 

In terms of side effects from Radiotherapy i was lucky they were minimal, bit of pink skin, scar tightening etc but i did have a week or so after i had finished completely where i had to have a rest in the afternoon and this is not my usual.  I reckon the Nurse is so right and to carry on for at least 2/3 weeks after as if you were still having Radiotherapy.

  

Take Care of yourself Claireglen and try to get rest although i know this is not always easy when you responsibilities.

 

Take Care   Gilly x   

claireglen
Member

Re: starting radiotherapy

Hi Pink Lady, Saturday, day after finishing I felt dreadful on the morning. I have felt this off & on seems to come in waves. Think it's the fatigue feels like exhaustion feel sickly with it. I hadn't felt it for a couple of days but had it again today before tea time but I have had my 1yr grandson all day & my mother who has dementia to the hairdressers. It seems to come on when I need to drink/have food/sleep & after food when my body doesn't seem able to do digestion as well as repair. Some people here have said it hits 10-14 days after finishing. Also rads staff told me on last day I hadn't felt full force yet & to carry on for a couple of weeks as if I'm still having it.
Freda61
Member

Re: starting radiotherapy

Hi

I have done day 4 of rads today.  Magical Moon's post made me think about waiting room etiquet.  (Magical Moon is one of my favorite people here, so this is not critical).  The first few trips to oncology I found myself quickly looking away from anyone with no hair or visibly ill.  Then I saw a lady the other day with her head down scurrying past and I realised she's even more worried and frightened than me.  Recently I have found it quite comforting when strangers in waiting rooms have wanted to talk because it distracts me and hanging about in waiting rooms is my worst time for negative thoughts. So I have decided to try to maintain an open body language and smile rather than turn away when I see someone I percieve as being poorly.  Would anyone with no hair like to comment on how they find the other idiots in the waiting room? Elaine

Freda61
Member

Re: starting radiotherapy

Hi Gill

 

I have seen another post on that here.  I am on the Import High trial which is looking at higher intensity near where the lump was and lower intensity further away.  Although beforehand I though I would not want to be a guinea pig, when I looked at it, I didn't feel there was much risk and I will get more detailed checkups.

 

If you put Fast Forward in the search box you might find the threads.

venice25
Member

Re: starting radiotherapy

hello ladies

am about to start radiotherapy and have been asked if i want to be involved in a clinical trail Fast Forward where you have 1 week rads instgead of 3 weeks anyone else doing this or have any comments thankyou Gill x

Dana1
Member

Re: starting radiotherapy

Hi all, coming to the end of one and a half weeks of rads so far. Boob getting red and sore and scars under axilla red and angry looking. I finally got the cabbage and when I got home today tried it as clothes rubbing and sore. The shape lends itself perfectly and straight away the hot stinging burning eased. It at least acts as a barrier between skin and clothes.

Spoke to BCN nurse today and said how it all felt so impersonal at our centre. She welcomed my comments as wondered why patients often phoned her rather than speak to Macmillan there, we would if we saw her! anyway feel quite positive.

I know what you mean about other patients M a lady was crying in the toilet and I felt helpless to assist her apart from letting her know I understood. Anyway onwards and upwards. Xx
Magical_Moon
Member

Re: starting radiotherapy

Hello Mary,

Going for my third zapping today and am getting into the routine now.

It was another 55 mins wait yesterday which is frustrating but there is no point getting up tight about it. There are such a lot of people treated daily and the radiographers do their very best.

I do find lingering in the waiting room is testing my emotions as I do find it distressing to see patients who appear to be in a worse situation than myself. I get upset seeing people looking very unwell, ladies who have lost their hair and patients walking past with drips attached.

Yesterday, I did get upset as I waited but a kind nurse noticed me struggling on my own and kindly came to talk to me. She advised me to try and divorce myself from other peoples circumstances and concentrate on my own recovery. Her positive message was that more and more people are being treated and surviving cancer than a few years ago. So even though I see people looking very unwell, the chances are that they will be fine in the future.

It was so kind of her to take time out of her busy schedule to offer me comfort and advice.

On my cancer journey I have met so many kind and thoughtful medical staff. It has been a very positive experience despite the seriousness of being diagnosed with breast cancer.

Peace and Positivity to everyone dealing with cancer.
M xxx
Guest user
Not applicable

Re: starting radiotherapy

Hi clareglen I'm on my 4th session and feeling ok so far. I'm just waiting for the treatment to kick in any advice on when it will kick in. The simple shower gel is good to keeps your skin soft. Pink lady.
mary32
Member

Re: starting radiotherapy

Hi M

 

Great that you have started and are comfortable with the process. It is a bit of an unkown isn't it until you start.

 

I finished 3 weeks ago and did not like the first few sessions but settled down to it and the time went quite quickly. The delays are quite frustrating, specially if like me you always arrive early!

 

I applied lots of cream before, during and after. The other thing that was mentioned to me was to drink lots of water.

 

Hope it all goes smoothly for you.

 

Mary

Magical_Moon
Member

Re: starting radiotherapy

Today I had my first radiotherapy treatment at Clatterbridge Hospital. 14 more sessions to go before Christmas and then I'll have completed my treatment plan.

Everything went well despite having to wait 50 minutes past my appointment time. There were two female radiographers setting me up on the machine and both were kind and considerate. Had a few small ink marks drawn on my skin to highlight the two tattoo pin points inked on me two weeks ago.

Session took about fifteen minutes. I was given some aqueous cream to take home and apply three times a day.

Pleased I have got the first one over and now know the routine. Just hope the wait isn't as long tomorrow.

Peace and Positivity,
M

claireglen
Member

Re: starting radiotherapy

Hi Pink-lady, how did you get on? I've finished rads yesterday, am sore with the stabbing pains again & I felt dreadful this morning, really starting to hit me now. I noticed my scar, which was fading nicely, is now all red again especially where the stitches have been, so I can see why they might postpone if it's not healed.
claireglen
Member

Re: starting radiotherapy

My scar healed quickly but I think they will put you back. You have to be healed before you start rads. It was 20 Aug when I had my op & only on wk 3 of my rads now. I was totally healed & only still a little sore. Have gone back to being very sore internally now so you need to be healed before you start. It'll be better in the long run.
claireglen
Member

Re: starting radiotherapy

I got the stabbing pains about half way through 1st wk. Into 3rd wk now & they seem to have subsided but genuine internal sore bits now like after op. I stretched before I was fully awake this morning & it was excruciating. Don't know what I did, but when doing exercises later it was OK. Skin OK at the mo. 2 more days to go. My appts have been all over the place.
Guest user
Not applicable

Re: starting radiotherapy

Hello ladies I'm ment to start radiotherapy tomorrow but my scare has come open very slightly my macmillian nurse has told me to go up to the hospital and show them and see what they decide. I'm expecting them to tell me wait till after the weekend. I just want to get in done in time for Christmas. Feel down about it at the minute. Did anybody else have this happen.
Dana1
Member

Re: starting radiotherapy

Had radiotherapy today for first time. Experience a lot better than for setting up, although there were only men radiographers and no women but to be fair they did ask me if I minded as the female member had been sent home. Just wanted to get on with it after 40 min wait and over hours journey to get there. Immediately tho appt for tomorrow put back 1 hr 20 mins to end of day. Can feel effects already, skin feeling sensitive and scar sore, getting stabbing pains. Oh well all in a good cause. Xx
Lucy_BCC
Member

Re: starting radiotherapy

Hi Pink-lady and welcome to the BCC forums

 

Along with the support and shared experiences you will find here please feel free to call our helpliners for further support on 0808 800 6000, lines are opwn 9-5 weekdays and 10-2 Sat

 

Here's a link to the BCC radiotherapy information with a link to our publication which you may wish to order, I hope you find this helpful:

 

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/radiotherapy

 

Take care

Lucy BCC

Guest user
Not applicable

Re: starting radiotherapy

I'm starting radiotherapy on Thursday, don't no what to expect but just want to get it started now. My scare opened slightly so I got inodine on it the nurses at my doctors are hoping it does the trick and heals over just keeping my fingers crossed.
Dana1
Member

Re: starting radiotherapy

Hi ladies

Mentioned to occ health about experience and she recommended writing to hospital to draw their attention to how their rad staff are coming across. Might just do this. Thought I might have to justify time off as I'm sure manager expects me back to work but occ health lady lovely and she told me that I wouldn't go back until new year at least. Hugs everyone xx
2catlady
Member

Re: starting radiotherapy

Hi,Claire,I was having rads on my spine. But I do agree why can't they have female staff for women patients . Keep the "boys" for the men patients . This awful disease can rob us of our femininity without having to strip off in front of strange men when you are feeling vulnerable . Do they never think how we feel! You could mention to your BCN or hospital about how you feel and they might start to think about how it makes us feel.
Good luck with your treatment Claire,huge hug xxxxx
claireglen
Member

Re: starting radiotherapy

Day 3 today.  It's not been bad but yesterday I was shocked to find one of the radiographers was a young lad (can't even use the term man).  I wasn't expecting this I was expecting all female staff.  I felt awkward having to strip off my top in front of him.  Today same lad called my name & when I went in there was another young lad, so that was two male radiographers.  Couldn't believe it.  I had a cropped top on today as I've felt more comfortable with it than going bra-less.  So I just pushed it down once I was on table.  Then a female assistant came in as a chaporone I think.  But all 3 were less personable than the two female staff I had on Mon.  They seem to be on a rota which I can understand so they're not exposed every day but does no-one think about the female patients at a female breast rads treatment clinic?

claireglen
Member

Re: starting radiotherapy

2catlady.  How awful!  Why did you have to pull your knickers down for breast rads planning?  He should be sacked.  That sounds wrong.

Countrybumpkin
Member

Re: starting radiotherapy

Sorry to hear that Dana and Catlady have had such bad experiences - this disease and it's treatment is bad enough already, without having extra problems from less than sympathetic staff.
Big hugs to you both xx
2catlady
Member

Re: starting radiotherapy

Hi,just wanted to add my experience .i had the rudest surliest man,who told me to pull my knickers down as he stared at me while I did it in front of him while lying on CT table for planning and dots. I cried all through scan and was very upset and humiliated .I have complained to BCN who contacted the hospital where I had my radiotherapy. The "boss" rang me up to apologise and say she would have a word with him. Also she would now offer patients long gowns and something to cover up with.
Hopefully something positive will come from this.After the shock of primary and bone mets at the same time being humiliated by awful man was one thing I could do without.

Dana1
Member

Re: starting radiotherapy

Went for setting up appt on Monday. Found the whole experience very impersonal. Sat in a T junction area of corridors people constantly walking by no staff there from radiotherapy area. When went in to ct simulator 4 very young radiographers just manhandled me into position talking to each other above my head. Did very little explaining and even started taking my top down without telling me what they were doing. Sigh - I suppose that's what you get out of area my hospital wouldn't be like that. Lets hope the actual rads staff are more pleasant. Have a 21/2 hr round trip to rads for 18 sessions and are not really looking forward to it. I too will then have bone density scan as they are offering me tam and zoladex inj.
claireglen
Member

Re: starting radiotherapy

I had WLE & SNB mid August.  Had quite a wait for various test results.  Decided not to have chemo.  Had rads planning 3 weeks ago.  Hospital cancelled start date last week.  Had to buy (I see some on here are given it) acqueous cream, but I think it's making me a little spotty.  Started rads today & hospital told me that they've had new guidance & they've been told there is no evidence of cream making any difference.  Also, just to report my experience, no gown offered at my hospital as you just go in the room with the machine & strip off, same with the planning session.  They also told me no shaving & no deodrant unless it's Pitrok or similar which I've moved to anyway which doesn't contain aluminium or parabens, but just washing at the mo with Simple soap but gonna give the cream a miss for now.  I will be having bone density scan before I start hormone therapy once rads finished.

Countrybumpkin
Member

Re: starting radiotherapy

Hello joolieboolie and welcome!

Yes, I agree, the waiting is the worst time of all, all sorts of thoughts were running through my mind and I expect you are just the same. Once you have your results, and you know what your treatment will be, things seem much better.

Sending you a big hug! xx
Guest user
Not applicable

Re: starting radiotherapy

Hi CountyBumpkin I was recently diagnosed with BC on the 24th sept and had a lumpectomy and Sentinal Node Biopsy 2 weeks ago at Castle Hill Hospital and everyone there was very friendly and helpful im still waiting on pathology results from biopsy which has been stressful to say the least! I dont know what treatment im gonna need yet but wish they would just hurry up and let me know then I can get back to a bit of normality! ... lol... xx
Melena
Member

Re: starting radiotherapy

Hope the radio is going ok. We have a room to change into and also provided with a gown which we can take home until our treatment is finished. Must say the care at our hospital has been excellent. Good luck

lucy12
Member

Re: starting radiotherapy

Hi lilginge

 

I had WLE and SNB on 6th Sept - clear margins and no lymph involvement. I did ask if I would need chemo at my diagnosis and was told it would be like cracking a walnut with a sledgehammer as my tumour was so small (12mm). Now nearly half way through 4 weeks of radiotherapy and started on Tamoxifen.

 

I am glad I wasn't given the choice as I really don't know what I'd have done.

 

Good luck to you and to Dana1 with this decision XXX

Dana1
Member

Re: starting radiotherapy

I had WLE and SNB 4 Oct went for oncology appt last week expecting to arrange rads appt and they offered me chemo too. Not that they think it is necessary just so they have offered all treatments as some ladies demand it. But it did throw me. Making choices about treatment is so hard it is so much easier being a sheep and undertaking the treatments you have to have ie surgery. I have decided on rads and will see the consultant next week instead of registra just to talk it through further. I had glue to seal my wounds and they have big scabs still. How long does it take for them to come off as it sounds as tho I can't start rads until this happens. X
nerakq
Member

Re: starting radiotherapy

lilginge so sorry to hear about your less than reassuring oncologist visit, I suppose it just goes to show that even when we think we know what will be next it can change. Hope you make the decision that is right for you and your own personal situation .......x x
lilginge
Member

Re: starting radiotherapy

Thanks Lucy, I notice you're the same age as me, can I ask what treatment did you have? Been awake half the night going from one to the other in my head..... Xx
lucy12
Member

Re: starting radiotherapy

Hi lilginge

 

What a tough decision. My only advice would be to talk to everyone you can (good idea to get a second opinion) and keep an open mind.

 

Sending lots of hugs and posiitive vibes X

 

 

grumpy
Member

Re: starting radiotherapy

Ladies, the one bonus of rads is I no longer need to shave my armpits!!!!!

I just washed with simple soap or boots own brand.

Deodorants - be careful and ask at your clinic, as these 'pure' ones are a pure aluminium salt, so not good during rads. Look at the contents list....

All the best to all of you, I found it OK even tho it was a160 mile round trip every day for 3 weeks! 

Grumpy

mary32
Member

Re: starting radiotherapy

Hi Countrybumpkin,

 

I know exactly what you mean about accepting that you have cancer, I'm not sure I have either. I mean I am now used to telling people without getting upset but do I really believe it, not sure. For ages after the dx I kept thinking that they must have got the samples muddled up in the path lab. Apart from the little lump there has been no other symptons, it has not made me feel ill, its the treatment that has done that.

 

It's a strange business that's for sure.

 

Feeling a bit down this evening I guess, I had to wait nearly an hour for my rads this afternoon and now they've changed two of my appointments to early evening which doesn't suit at all. I don't like all the man handling or lying there on my own while the machine does it's thing.

 

Sorry to sound gloomy.

 

Mary

 

 

Countrybumpkin
Member

Re: starting radiotherapy

Hope your appointment goes okay nerakq xx
Countrybumpkin
Member

Re: starting radiotherapy

Hi lilginge - what a difficult decision you have to make, but how wise to ask for a second opinion.
Thinking of you and sending you a big hug xx
Countrybumpkin
Member

Re: starting radiotherapy

Good evening ladies!

Just picking up on something Sian said earlier, about the moment when it really hit about BC. I don't think I've accepted it yet that I have BC, it still feels like someone else's problem, and not mine - even when I see my scars and miss-shapened lumpy breast. Don't get me wrong, I've had plenty of tears, and "why me?" moments but I know inside that I haven't really accepted the truth yet.

What are your thoughts? XX
lilginge
Member

Re: starting radiotherapy

Saw my onc today and she totally threw a spanner in the works by telling me that if I was anxious about the thought of recurrence I should go down the chemo route, but it is my decision and one I have to make by the end of the week. Am only 44 with family history (mum and sis, both had chemo and rads which is soething I brought up at the meeting) so I think that is why she is suggestig this as an option to consider......
My tumour was quite small (10.5mm) with clear margins and no lymph or vascular invasion, HER2-ve and ER and PR positive. The stats test she did showed without chemo there was a 5% chance of recurrence.
Am going to ask for a second opinion tomoro as wondering if she was just concerned about my worries but as the nurse in the chemo suite who rang me later in the day said, equally they don't just give chemo on a whim....
Such a tough decision to make, really not sure what to do...... xxx
nerakq
Member

Re: starting radiotherapy

Glad to have found this thread I have recently had two WLE surgeries and now waiting for Oncologist appointment , it is a very funny feeling not really knowing what is to come but by reading others experiences it does settle my nerves somewhat.
lucy12
Member

Re: starting radiotherapy

Glad it's all going well Smiley Happy

 

I'm just over a week into a four week program of rads and so far it hasn't been as bad as I was expecting. I'm starting to get a little sore and red and the area is feeling bruised but nothing too bad at all. I'm a terrible sleeper and constantly tired anyway so no change there then!

 

We've been told to use aqueous cream (provided) or aloe vera gel - but only to use one or the other, not both as they will cause clogging. I am also of the smelly armpit brigade, am using the crystal type one from H&B but it doesn't seem to do much - I have ignored their advice of not shaving as I aleady feel ugly with the scar and I'm not making it worse with hairy armpits!

 

Countrybumpkin - I know what you mean about them being so young. I'm 44 and I swear everyone in the radio department are young enough to be my children. Such a lovely bunch of people though and it's hard not to move when they're making me laugh so much!

 

Good luck everyone

mary32
Member

Re: starting radiotherapy

Hiya

 

Yes, it wasn't too bad, I just don't like lying on those machines...

 

The vest top worked well, Someone else on the forum suggested it I so thank you for that. I just pulled it down when I got onto the table.

 

It is strange that different places have different rules for what you should and shouldn't do, I'm one of the smelly armpit brigade! 

 

Thank you Sian for sharing your experience, I'm glad it's gone well for you. 

 

1 down another 14 to go....

 

Mary

Countrybumpkin
Member

Re: starting radiotherapy

Hi Sian

Thank you so much for your reply, it's great to hear from someone who has just finished treatment. I am so glad your energy levels are returning to normal, that was one of the things I was worried about.

Did you have much burning or sore skin, and did the cream help? I must admit I have a tube of H&B aloe vera gel in case the aqueous cream doesn't help.

There were both male and female staff in attendance when I went for my initial scan session which surprised me, as did the fact that the male staff seemed very young - but I'm 62 so I suppose everyone looks young to me 🙂 LOL

Thanks again for getting in touch ! X
Countrybumpkin
Member

Re: starting radiotherapy

Hi Mary - hope all is going well and that it's not too scary?

I am having my treatment at Castle Hills, Hull. Different hospitals seem to have different policies - I have been given aqueous cream to use, and told that it's okay to use deodorant and continue my usual hair removal practices, whereas I have read on the forum that other hospitals don't allow this.

They have told me a gown should be available but I think the vest top is a good idea - there is a small changing area in the treatment room with a privacy curtain chair and mirror.

Good luck with your treatment !
Guest user
Not applicable

Re: starting radiotherapy

Hi Ladies

I thought you might like to hear from someone who has just finished rad 3 weeks ago. I'm almost 61  and a small lump was removed at the end of July. I didn't need Chemo thankfully so cannot compare. I had 15 sessions of radiotherapy and apart from a little tiredness in the second week I felt Ok. I had a little blip on the 2nd session when I thought "what am I doing here" and got a bit overcome. The first day I was asked If I'd like a gown but there was no changing space so I guessed my answer was supposed to be "no". That day it felt OK as the were 3 females in attendance. The second day however it was 3 males. I'm not prudish but I think it was  then that I felt as if I was a bit of meat on the butcher's slab! The staff were always very lovely but I think it was that day that it really hit me that I had BC. We keep soldiering on saying "I'm fine" so much that we can almost believe it. Almost.

 

3 weeks on and I do feel normal now. My energy levels have returned and I want to get stuck into projects again.

Hopefully it's all behind me now and the new year will bring good things to you all too

 

Very best wishes 

 

Sian xx

mary32
Member

Re: starting radiotherapy

Hi Countrybumpkin

 

Your situation sounds similar to mine, I am a week ahead of you, start tomorrow.

 

My hospital have recommended using doublebase gel on the breast so I have got that on prescription,it's quite nice, fairly light. Different hospitals all seem to give different advice as to what creams etc to use.

 

The assessment session wasn't great, at one point I had 4 people peering at my wound as it still had a scab on it. The consultant is going to have a look at it tomorrow to make sure they are happy with it.

 

They have also said to bring a dressing gown as they have nowhere to change????? Can't work that one out.... if nowhere to change then at what point and where am I supposed to change into gown? Anyway I have bought one of those vests with breast support so will just pull it down before I lie on the machine.

 

Will let you know how I get on. My treatment is at st Thomas's, London.

 

All the best 

 

Mary

Countrybumpkin
Member

Re: starting radiotherapy

Hi - I start radiotherapy on the 4th November.

I had a WLE and SNB , I didn't need chemo. I found the initial measurement and scan session very scary, didn't like the position and felt quite anxious. But everyone on the forum seems to think that radiotherapy is easier to cope with than chemo, so fingers crossed and good luck to all of us !!!
lilginge
Member

Re: starting radiotherapy

Hi, I think I'm starting in the next couple of weeks, I was waiting for the Oncotype test to be approved to determine if chemo was needed or not but as my CCG is not going to fund it I've got to speak to my onc on Tues and see what she thinks with regards to next stage of treatment. But going on my results from surgery I think she will recommend radiotherapy and Tamoxifen as chemo may be seen as over treatment. Will wait and see..... It is scary and although a lot of ladies on here say it is a breeze compared to chemo it's still making me a bit anxious not knowing how will react. Keep in touch as to how yours goes, be nice to have a little radiotherapy group to chat to!
Take care for now, xx
mary32
Member

Re: starting radiotherapy

Hi Melena

 

Yes, I am starting on Monday and am VERY apprehensive.

 

I had wle and snb early September and no chemo so the rads are terrifying me at the moment.

 

Good luck to you and keep us posted.

Melena
Member

starting radiotherapy

Anyone starting radiotherapy soon. I start next week. have had my marks put on and had a CT scan. am not as haprehensive as I wa swith Chemo. Good luck to all of you starting it.