I also had treatment (WLE and rads) for intermediate stage DCIS and had no problems with radiotherapy apart from my nipple peeling after the sessions were all complete. I felt it well worth having rads as they give a 50% reduction in recurrence rates according to both studies I have read myself and according to what my Oncologist told me.
Is there any way you could have mistaken the information given to you as the 1% recurrence rate you were given is not something I can relate to any information I have either read or been given.
Have you ever been on the american version of thiswebsite (http://www.breastcancer.org)? There is a poster on there called Beesie who is very knowledgeable about DCIS and her posts have links to a lot of DCIS studies. I think that by reading them you may be able to make a better-informed decision on whether or not to have rads.
Best wishes to you.
Thanks for your comments.
I've done quite a lot of online research already, but I'd love to have your links too Cathy, in case there is something I've missed.
I don't yet know exactly what my margins are/were as I am still waiting for an appointment with the oncologist to go through everything, but I'd like to be ready with as many questions as possible to make sure I make an informed decision. So, Cathy, your comments were really helpful!
My experience of radiotherapy (after DCIS high grade) was absolutely fine. The only problem I had was at the end when my skin started to peel like sunburn but this didnt last long(it helps if you use lots of aqueous cream during the treatment). I felt extremely relaxed after each treatment,which was lovely!!
I was in a very similiar position to you last year. I had WLE for DCIS intermediate grade and was given the option of radiotherapy. I did quite a lot of research, looking at many papers to help me make my decision as whether to go with radiotherapy or not. In the end, it seems that if you are over 50, have low or intermediate grade cells and a good clear margin (this seems to be the most important part), then radiotherapy is probably unecessary. If you are younger, have higher grade DCIS or not so good margins, then radiotherapy is indicated. As I was 49 and just in the younger woman bracket (by the skin of my teeth!) I went for radiotherapy. I did have good margins (6mm) so probably radiotherapy unecessary, but I went ahead anyway. If you need any more info to help you make your decision, I can give you the links to the journal articles and research I looked at.
I had radiotherapy ( 6 weeks) and didnt find the experience bad at all. I had a few blips but they were not directly connected to the radiotherapy and those 6 weeks flew by. I guess everyone has a slightly different experience but mine was quite a positive one.
Let me now if you want any more details or info as happy to help in any way i can
Firstly may I welcome you to the forums, I am sure you will receive plenty of useful advice and support from our many users.
In the meantime, I have given here a link to our publication on the subject of Radiotherapy. You may find this a helpful read.
I do hope you find this informative.
I've just had a second WLE for intermediate grade DCIS. This was successful and my surgeon has signed me off until Jan 2010. But I'm now waiting for an appointment with the oncologist to discuss radiotherapy. I had thought that this was an essential part of the treatment, but my surgeon has said that it's optional so up to me whether I decide to take it up. She said I have a 1% chance of the DCIS returning and that the radiotherapy reduces that by half. However, everything I read about the immediate and long-term side effects of radiotherapy is worrying me and now I am wondering whether it is really worth putting myself through all that for such a small difference in the return rate. Has anyone else out there opted not to have the radiotherapy? Any other thoughts to help me before I see the oncologist? Thanks.