A question for those who have finished or are still undergoing rads - did you get to see your oncologist during rads?
I’ve read stuff where it suggests you do, but my experience is that I’ve not seen mine since he referred me for rads. He was around but I didn’t see him the day I had my planning session. I’m now 7 in of 20 treatments, and just wondering if during the course of treatment any of you saw either your consultant or one of his registrars to see how things are going? I want to get a handle for if it’s something I should be pushing for, something that will occur maybe a little further on in treatment, or it’ll be at the end of all the zapping.
I saw my onc during rads, but only because I was having major problems with tamoxifen and I said I needed to talk to someone about it. I had a routine appointment with her 6 weeks after rads had finished, for a follow up.
I suspect it’s the same old story - different in different parts of the country.
hi Mary, nope, only saw onc on my planning session before rads started (obviously saw her before then to discuss rads) - don’t expect to see her until my follow up which I imagine would be about 6 weeks after rads have finished.
Im in NWales ,had 15 rads,saw onc at planning of rads then again during last week of rads to discuss how they were going and how I was getting on with tamoxifen,now got appointment to see her 6months after the last visit.
I’m in West London, and have seen my oncologist just the once when he told me I’d be having 20 rads + tamoxifen. So at least you saw him/her at your planning appt… Mine didn’t want me starting tamoxifen until after I finish the rads, so I suppose from that point of view, there’s possibly not a lot he can say or do until I’m started on that treatment. I’m actually hoping to have at least a month off before I start the tamoxifen. If I have skin problems (which I’m a strong candidate for) then I’m going to feel to vile to start taking a treatment which has the potential to make me feel even viler.
Had my planning on Friday and saw the oncologist then. Unless I have any problems re Femara or rads I will not see him again until 6weeks after rads are finished. Think that is the norm in Glasgow.
am sure that onc would see you if you were concerned about anything during - or a deputy ! I am not starting tamox. until September,simply because I feel I need to recover and brace myself for that !
I haven’t seen my onc since I was referred for rads. I finish rads on Wednesday and have been told that I’ll see him again in about 3 months time so that everything will have had time to settle. It really is different at every hospital.
Nicky x
I am also in West London, I saw the oncologist at the planning meeting, again at the begining of the last week of rads, then again 1 week after they finished.
Jojoxxx
I decided to ask what the deal was normally at my hosp - and it sounds similar to your experience Jojo. Normally I would see the oncologist in the last week, but because my last week is the bank holiday week, he’s not holding a clinic, so I’ll be seeing him the week before, apparently!
Your replies are very comforting - yet again, there seems to be quite a lot of difference in how hospitals around the country do things! I suppose what made me wonder if it was all normal was that I didn’t see him at the planning meeting, but saw the RT superintendent instead.
2/5s of the way through now! I’m keeping score daily. I really can’t wait for it all to be over now.
I think we can get ourselves into a pickle because it seems to vary so much from hospital to hospital - nothing is uniform,which can make for anxiety !
Hi all,
I started Tamoxifen about 6 weeks before starting Rads. I don’t think its much of a problem for me that is, I do have to take other medication besides.
Regarding Onc. Saw her at planning, but not really to talk to. That was mid June. Started Rads on 5th July.I was meant to see her on the Monday (27th) at the start of the 4th week going into Boost Treatment. As they decided that I didn’t need the Boosts, I didn’t get to see the Onc. Shortly after I had a follow up card for October 14th. Thats much longer than 6 weeks. I spoke to a friend who also finished about the same time, she didn’t see the Onc. either but she thought it was a longer wait as she was going on holls.
My Rads Planning was delayed because of holls too.
To tell you the truth when they said I could finish coming to the hospital every day it was great but then I didn’t get any advice on how to properly look after my skin. I used the aqueous cream but then my skin broke down really bad under the boob, in the end, ended up being on a course of antibiotics (thats over the last week.
Have had to have a dressing between skin and boob too.
My practice Nurse at the local Doctors doesn’t seem to realise that I can’t have anything adhesive next to the skin because it tends to pull it off. Anyway, it seems to be healing, its definitely not as red as before. When I first got in touch with RT, they recommended Intrasite gel. I had some dressings with the gel inside but quite honestly they gave me a fungal infection. They were prescribed from my P. Nurse.
Also is it only the Tamoxifen Drug that you get FREE, as I am on already a pre-paid Card or do you get the dressings to treat the breast cancer free? I was just wondering as they got 2 prescriptions wrong for me.
Regards,
Whirlwind
Didn’t see Onc at planning meeting for rads as he said that the Radiotherapy Planning Dept doctors and nurses were the absolute experts and he would not be able to contribute anything of use to that. Saw him at beginning of the last week (of 5 weeks) of rads so he could check the skin under my breast and arm.
Yes, Laptalass that’s right - from 1 April this year, you can get an exemption certificate form from your GP. You need your NHS number and GP signature, then you send off for it, and it’s sent out to you in the post. Not sure if it exempts you from any meds, or only ones related to treatment for cancer and treating symptoms from treatment for cancer. Either way, though, Whirlwind, you should be getting all your dressings for your damaged skin as well as the tamoxifen free.
Chipper - you are spot on about the anxiety the wild variations across the country can cause. We’re all trying to see if what we’re getting is ‘normal’ and there doesn’t seem to be such a thing! The good thing about that is that it should mean a certain amount of tailor-made-ness about each of our individual treatments.
I’m doing my best to not let my skin break down. Still doing the hankie wrapped around cotton wool pads under boob, and now using a breast pad across sore nipple (I ordered some pure silk-faced ones from Boots website). Think at the hospital they are reluctant to give you stuff to avoid the problem arising, and only treat once you’ve got a problem.
I used my exemption card thing to get my Allevyn prescription after rads though I was a bit uncertain as I am still undecided about having tamoxifen and thought then that if I wasn’t having it maybe I shouldn’t have ‘free’ dressings - explained all this to the pharmacist because I am scrupulously honest and would have been plagued by guilt if I hadn’t ! she was very sweet and said that any cancer related precriptions would be included and I get the impression it covers any other medicatio n for other problems unrelated to cancer treatments - but maybe am wrong there !
Good luck with the rest of this week’s rads Mary - am thinking of you.
Saw the oncologist (well, the registrar rather than the consultant) today. Skin looking good, apparently, and unlikely to break up now. Fingers are now so crossed, they are practically plaited, that this remains true for the final 5 days of zapping. I will never be able to have rads to the area again. Won’t see onc again until 2-3 months time, which would be to check how I’m doing on tamoxifen.