Just thought I would write and say I am joining your gang. I am going for marking on 7th and start rads on 11th. Its something I thought I would not need as I have had chemo them mastectomy on 10th Dec with no lymph node involvement and no vascualar involvement. After lots of discussion, they have recommended it for me because of my age, the fact that I am hormone neg, the tumour did not respond well to chemo, it was dcis and idc grade 3, and they think I am going to be a carrier of the hormone. The way consultant put it - the chances of local recurrence go from 20 to 25% wtihough rads to 5-7% with - so there really was not a choice as far as I am concerned.
At least this way I know everything has been thrown at it as I am also her 2 neg. My only bone of contention is they will now not do recon for a year after so will be left like this for longer than I wanted/hoped.
I started back to work on rehab last week and hope to continue working throughout - is this realistic??
Have been warned about possible tiredness and sore skin - have already started plastering on aqueous cream. At least its only to the chest wall and not axilla so no risk of lymphodema.
Any advice greatly appreciated from those of you going thro it already or already finished.
Hi again Fiona, we keep following each other around!!
I am starting Rads this Thursday, done the bi-lat mast in Nov and just about got used to the tissue expander implants - they are rock solid though and don’t move anywhere like normal boobs!!!
Good luck with your Rads…and yes please any handy hints most welcome.
Can I be a new gang member too? I have planning appointment on Feb 4th but don’t start rads until the 26th.
I too look forward to advice from others.
Tracey x
Drink lots -i found that i got Dehydrated very easily
Also, especially near the end I got very tired just going for appointments so tried to keep my days clear to rest as much as I could.
My skin held up pretty well but split under my breast at the end. Keep slapping on the aqueaous cream and also try not to wear a bra as much as you can. I wore little vests which helped.
I had to be remarked three times as they kept not being able to line me up when i went for blasting. Hopefully that wont happen to you. Take a good book - for me it was swings and roundabouts -some days i went in early, some on time, some very very late
Jools
Start the cream before your treatments, and take a tube with you so that you can apply some before the journey home. the last few treatments are the worst for tiredness, so if anyone offers to take you to the hospital that’s when you’ll need it most. Also do keep up the excerises so that your shoulder won’t be too stiff. Good luck everyone, and keep in touch.
Jojo
I agree with Jools, I got really dehydrated and refuse to drink tap water in London so spent a fortune on bottles of water! Made sure I never ran out as I was very very thirsty most of the time.
I don’t know how many rads you’re having, I had 15 (like you after chemo and mastectomy), but am ER+ so am now on tamoxifen. But my skin did not split as I slathered on the acqueous cream all day, it’s very red now (I had last session last Friday) but not sore at all, itchy more than anything else. I can wear my special mastectomy bra for short periods.
Rads is nothing to be afraid of honest. Like Jools I got a little tired, but think that was more from walking to the hospital and back each day (only 1/2 hour for me each way but more exercise than I usually get!). Take a book, that’s a good idea.
I have heard the tiredness can kick in a week or so afterwards so may have that to come!
I’m also joining the gang next Monday (15 sessions) and am grateful for all the tips from you veterans - especially that one about keeping up the exercises, 'cos I’ve been kind of neglecting those lately.
Thanks for all your advice. I will start on the tub of cream now. Sparkler - I’m having 22 sessions - that sounds a lot more than many others on here - I’ll ask why so many on monday.
I’m being zapped at St Thomas’ in London. Is anyone else going there? Apparently they have a nice support group on fridays.
Me! I start at Guys and St Thomas’ on Monday. I think my first zap is on the machine at Guys, but after that, I’ve definitely got some appointments at St Thomas’. What time are your appointments? And do tell me more about this support group. We can take this to private messaging if you like.
Hi Yvonne
How do you do private messaging - let me know!
My appointment is at 1030 at St Thomas’ on monday. It’s the planning session - the treatment actually starts on Feb 26th. I haven’t got the timetable yet, but I’ve asked for late morning appts.
Another lady on this site mentioned the support group to me - she said it’s a sit and chat and have a coffee session run by the BCN and had a lot of younger women when she went. Don’t know what time it is though - if it’s late in the afternoon I’ll have difficulties because of school run.
I’ll find out more on monday and let you know - if we don’t bump into each other.
Tracey
To use the private messaging system just type the name of the person you wish to message in the box marked ‘send a private message to’ The message will then appear in the discussion thread where you have posted but only be visible to you and the person to whom you have sent the message. Do remember though that the system is ‘case sensitive’ so make sure you type the person’s username just as it shows on the forums.
I just rechecked my schedule and I’m actually at Guys all next week - except I’m not sure if my pre-treatment thingy on Monday is at Guys or St Thomas’. Whatever, that’s at 9.25am, so unless they’re running late, I guess we won’t see each other. Oh, and I’ve heard that sometimes the Guys machine breaks down and they send you over to St Thomas’, so you never know - we might bump into each other.
Anyway, if I don’t see you, have fun at the planning session. I actually found it quite interesting, if fairly weird.
Thanks for the info about the support group. I’d like the opportunity to sit and chat with fellow patients - that was the one good thing about the long hours I spent in the chemo waiting room. It was like an informal support group there - we all swapped stories and experiences while we were waiting for the pharmacy to get our chemo ready.
Oh, and the blurb I got at my planning session says to start creaming yourself just a couple of days before zapping starts, so you probably don’t need to start yet.
I thought you may be interested in our live chat sessions on Thursday evenings from 9-10pm, there is an expert breast care nurse and a trained facilitator present to run the session. To join live chat go to:
Hi Yvonne
Hope your first lot of sessions go ok. You never know we might bump into each other! Thanks for the advice on the cream - I won’t start slapping it on just yet!
Did you have a CT scan?
Have a good weekend
Tracey
Yes, I had a CT scan. The room was freezing but apart from that, it was fine. I just closed my eyes and thought happy thoughts.
I emailed about the support group - it meets on Fridays in the Dimbleby Centre at St Thomas from 11.30am - 1.30pm, so that’ll probably fit in with your school run, Tracey.
I finished my radiotherapy (at Guy’s and St. Tom’s) two weeks ago. I’ve had a mastectomy so the radiotherapy was only to the chest wall. I had absolutely no skin problems or even redness and was able to wear my prosthesis and underwired mastectomy bra’s all the time. At one point I even asked the therapists if they were actually turning the machine ON, so surprised was I to have had no skin reaction! I applied cream every morning and evening, and showered daily with Simple Body Wash (using just my hands over the scar area).
I have to say I preferred Guys to St. Thomas’s hospital. Easier to get to from London Bridge, and it has a calmer atmosphere…I think St. T’s is like being at an airport, such a busy place. Guy’s has only one radiotherapy machine at the moment, whereas St. T’s has 5 or 6. The staff at both places were very nice, and all very young! Treatment only takes a few minutes and is not at all scary. At Guy’s there is a 3D mural of Palm Trees on the ceiling to gaze at whilst you are having your treatment…I used to lie there wondering if a coconut would fall on my head, lol!
Also at Guys you see a radiotherapy nurse every week, who checks your scar or breast, and discusses any problems. There is a cafe in the main entrance of the hospital and quite a good restaurant for staff and patients down on the lower ground floor.
St. Thomas’s has a tea trolley come round for patients, not sure about Guy’s, but I missed it each time anyway, as I was in having my treatment. Can’t comment on the support group, as I never knew about it!
Got my first appt with the oncologist on 11th Feb to find out about radio, seems such a long time to wait since I had my op on the 4th Jan. I have been getting tips from your letters and will go to the chemist tomorrow and get some aqueaous cream and start slapping it on.
Going to take my first Tamoxifen tablet tonight, will take it with a glass of wine and toast the next 5years of my life
Rads are fine. I had 15 sessions at Barts, finishing on 17 December last year. I didn’t burn at all during the three weeks. Afterwards I had reddened skin for about three weeks but it itched rather than hurt at all. Oddly I felt energised by it rather than tired! Probably did me good getting up in the mornings and getting on the tube, rather than slobbing about at home. Start the aqueous cream before you start the rads, and as someone said earlier, I took the tube with me as well to smooth on straight afterwards as well. Seemed to work! Bless them - at Barts I was seen early every day bar one, when it was bang on time! I had no trouble wearing my admittedly comfortable sports bras. The three weeks whizzed past very fast indeed.