starting RT - can anyone help ease my anxieties?

Hi, I’m due to start rads next month at Bristol (45 miles from my home), following a lumpectomy and axillary lymph node sampling. My head is all over the place, trying to take it all in…the fact I had breast cancer in the first place, the surgery, Tamoxifen etc. I’m sure I can’t be alone.

I would be very grateful if you can offer any advice on what i am to expect during and after rad treatment (lying still for so long, soreness, side effects, leading a normal life etc). I’m having 20 sessions, just on the breast, not the armpit.

I’m told to expect to be sore for a few weeks after it ends - did you go straight back to work or stay home until you were fully recovered?

Maybe this topic has already been covered. If so, please let me know where I can find it. Thanks for your help.

I think many of us feel just the same, fluffyface. Everything seems to happen so quickly, which is good in some ways, but doesn’t leave much time to assimilate anything before it is on to the next thing.

I had lumpectomy & snb, then rads in Feb/March and am on tamoxifen.

For rads itself you don’t have to lay still for all that long; it is the planning where you do. I did find the treatment position uncomfortable because the “arm rests” cut into my arms and pulled on my affected shoulder, but at least it wasn’t for long at a time. I got tired as rads went on (I had 18 sessions) and my skin got very pink. I had a burn in the fold under my breast and a week or so after I finished my nipple peeled. I was a bit sore but it wasn’t really painful.

I worked throughout rads, just a couple of days when I didn’t go in because of the timing of appointments - it was an hour and a half each way from home and just under an hour from work. I had a planned week off afterwards. As for the rest of life I cut back a bit because of feeling tired but not all that much.

Hope that answers some of your questions but do ask any specifics and I’m sure a few of us will have some thoughts.

Eliza xx

Thanks so much for your reply Eliza. This is just the kind of info i need at the moment, you know, the practical stuff. It’s all very well the nurses saying ‘you will feel sore and your skin may blister’ but i need to know the worst case scenario, from people who have experienced this, so i am prepared for anything.

I won’t be able to work because I commute anyway and most of my appointments will fall in the middle of the day, and i can’t be in two places at once!!

I am terrible when anyone comes near me with a needle, so I’m already anxious about the 3 tattoo marks they will put on my breast… does this hurt and does it take long? I had a bad experience with my biopsy so I’m not looking forward to more intrusion in that area. I’m sure more questions will follow as time goes on…

I may also pick your brains again Eliza, to ask about ‘life after treatment’. Thanks again.

HI Fluffyface
I am starting rads at Bristol next week.
When do you start?
Where do you live cos I live in Taunton about 45 miles from Bristol X

Hi

I had 20 rads in April last year. I didnt find them any problem.
The skin went a bit pink, but considering Im very fair skinned, the aqueous cream seemed to do the job. I never found I was tired at all, and my 1 year old was waking me at 5am every day at the time too!

Thanks Lolly, that sounds promising :slight_smile:

Libby, I live in Taunton too, and have chosen to use hospital transport each day. My Planning Day is 30 June, and treatment runs from 2nd to 29th July. How about you?

HI
I start 22nd june and finish 17th july x
I am also having hospital transport.

My tattoos didn’t hurt at all - just a bit of a sting but momentary. One in the centre and one under each arm. They just put on the ink dot and scratched it with a needle so it was very quick. The drawing on me felt weird!

My commute to work is only 45 mins and home, work and hospital form a triangle so with appointments at the end of the day (or early, but that meant M25 in rush hour!)I could manage. But I couldn’t have done that if I’d used hospital transport. The driving did add to the fatigue, so if you’re not doing that it should help.

The most important thing is to keep using the aqueous cream. When I started to go very pink they suggested using it 4 times a day rather than just twice and someone who had already been through all this suggested I keep the cream in the fridge.

By all means come back on “life after” questions (or anything else).

Eliza xx

Libby, you never know we may end up sharing transport? Either way I’m sure we will bump into each other along the way, and we can help each other along. Stay in touch, let me know if you want to meet, and I wish you well with the next stage of your treatment.

Eliza, ouch, it’s still needles whichever way you look at it. Don’t think I will ever be ‘at ease’ with them. Didn’t know they put dots under your arm as well, imagined there would be 3 of them close together on the breast. I had in my mind that they’d be about 1cm apart grouped together. Oh well, you live and learn! I’d definitely be interested to know how you are dealing with things in the future, and if you are able to put it to the back of your mind?

How have you been coping with all this? Have you been positive and focused all the time, or do you have off days, where you feel like having a good cry?

I should be grateful that it was only a Grade 2 ducto-lobular tumour, that’s oestrogen receptor positive, and the lymph glands are clear. But I’m still trying to accept and understand how they removed a 25mm tumour, plus the margin of clearance, when they told me the tumour was ‘tiny’ and only 10mm on ultra-sound. Apparently the other 15mm was ‘hidden’, or was less dense than the main lump, so isn’t detectable on ultra-sound, and it’s only 2D not 3D they say (i thought ultra-sound was 3D?). So they took rather more than I expected, and I am having to adjust to a much smaller breast than they told me I’d have. Am I wrong to be upset, after all I should be grateful they got it all out and they’ve still left me with some breast? My breast care nurse is trying to find out from pathology/histology what it looked like and the actual dimensions of what they removed, which I hope will help me accept what’s happened to me and try to move on.

I am also upset about my two GP visits when I found my lump. The first said she found something but told me not to worry. She said it was probably a gland flared up or maybe a small cyst and she was ‘97% sure it’s not cancer, so leave your worry at the door with me’. I wasn’t happy with this and went back 3 weeks later. The 2nd GP couldnt feel anything at all, and he only referred me to the clinic as I told him my contour had changed and looked unusual. He couldnt see anything odd. If I hadn’t mentioned my shape change this would have been left undetected and untreated. I find this all very unsettling, you know.

Hi Libby, please don’t worry about the RT it is the fear of the unknown that plays with our minds. I am sure we all felt that way before we went through with it. I had 19 after having lumpectomy and then mastectomy. The tatoos were just as described a sting no problems and I have even forgot now that I have them. Keep using aqueous cream and you will be fine. I had slight pinkness, no soreness, so hopefully you will be the same. Take care junieliz

hi fluffy face,your experience has a lot of similarities to mine,when i found my lump on 2nd feb this year i saw my gp who said he was 99% sure it was a cyste,but sent me for a mamo and scan which led to a lumpectomy&snb on 1st april(kept hoping it was a joke)i still feel totally detached from it all.i was also shocked and very upset by how it looks but saw my bcn last week who gave ma a wonderful silicone prosthesis and this has made me feel so much more confident and better about myself.try having a word with yours.i have just finished my first month on arimadex start 18 radiotherapy sessions on 24th and need a years herceptin because i am her2+est+ and pa+ as well as only having a .3mm against the chest wall which they cant improve.but at least we are getting the most fantastic treatment and have to get on with it.i wont say stay possitive but i will be thinking of you .take care valerie49 x xxxxxxxxxxxxxxx

Hi fluffyface,

They use the 3 dots and laser beams to get the alignment for treatment right. While doing it they talk to each other using their facinating jargon (phrases like “good for height”, “about a cm post”) and I actually enjoyed listening to them! I think it inspired confidence and I thought “yes, these people know what they are doing”. That combined with a bit of visualisation helped me considerably.

I’m not sure how I’ve been coping, really. People tell me I’ve been coping well, but I think that is because there isn’t an alternative! Mostly I have been focused and often positive, but on a few occasions I’ve lost the plot a bit and sometimes had a good cry. I was very weepy when active treatment ended and I had time and space to reflect on what had happened. I still have some off days but generally I feel positive and that I am now moving forward. Whenever I’m up against it, I journal compulsively and the writing has helped me deal with the mixture of emotions. It doesn’t work for everyone, but I find it helpful.

It sounds like my pathology was a bit similar to yours. My tumour turned out a bit bigger than the ultrasound suggested too but looking at the pathology report I can see that this may have been because of “hidden” bits. I asked for and got a copy of my pathology report and it gives the size of the block of tissue removed, the size of the tumour and the margins. I found this helped me to visualise and accept what the surgeon had done.

I don’t think you are wrong to be upset. It is natural to be upset about it all to start with and then finding that they took away more breast tissue than you had been expecting is clearly a bit of a shock and upsetting again. Initially I found my central tattoo upsetting on the basis that it sat in the centre of my cleavage looking like a large blackhead. I thought I was being silly and should be grateful to have cleavage when so many others don’t, but that didn’t really help at the time! I’m now okay about it and actually it is hardly noticeable.

Eliza xx

Hi fluffyface

I had to go for 2 planning appointments, one was a CT scan and one was a simulator machine. The tattoo in the middle of my breastbone stang a bit, but the others didn’t hurt at all.
I had 30 sessions, 25 regular then 5 boosters. The machinery they put you on is a bit cumbersome looking, but you soon get used to it.

I had 4 areas done - breast, collar bone and underarm from above and below. Because of this, for the first week I was on the table an average of an hour a day whilst they lined me up properly, which I didn’t expect as I was told it would be 10mins a day, but it was ok. After they had taken various pictures of me on the table, it was easier for them to line me up.

Rads was SO much easier than chemo. You can’t hear see or smell anything of the treatment, just a beeping hoise of the machine doing its stuff.

Having it will be fine. It sounds to me like you are just coming to terms with your dx, somthing which I did not even begin to do until about a month after the intense treatment phase was over. Sounds like you will have company at the hospital anyway. I met a lady in her 60s who was on the same machine as me, she had a daughter my age and granddaughter a tiny bit older than my tiny girls, and although we live nowhere near each other we have kept in touch and continued to support each other. There’s nothing like someone who has been through it too.

Good luck and keep us posted

Kinden
x

Hi fluffyface- I agree with so much that other people have said to you- you are still coming to terms with your diagnosis & coping with the unknown.

I don’t think I’ve really done that YET- and I was diagnosed after mammogram (symptomless) this time last year. Like you was told that a lumpectomy, rads & arimidex would probably be all that I would need. Unfortunately the SNB showed that the sentinel node was compromised and also my cancer was very aggressive. I then had full clearance- and though NO other nodes were affected, had to have 4 months of chemotherapy (not a lot of laughs!) and then a month of rads.

I won’t insult you by telling you that you are lucky to have escaped mastectomy and chemotherapy (no-one is lucky if they’ve got BC) - but I think most people would tell you that compared with chemo, rads are relatively easy. I found the radiographers were really nice women (and a whole lot more sensitive than some of the nurses!) - and the actual treatment was really quick ( my record was 7 mins from waiting room, undressing, treatment, re-dressing and back to the waiting room!)

I do have arthritis in my shoulders and thought holding the position would be painful but because the radiation was so brief and the radiograhers were so skilled, it really wasn’t a problem.

Like you, I lived over an hour’s drive from the hospital but I drove myself most days and I had no soreness, blistering or any of the bad reactions that a few people unfortunately receive. So it isn’t inevitable that you will have probs; I am very fair-skinned but had no ill-effects.
Good luck!