I had surgery on 1 Feb, wide local excision to remove 5mm of high grade DCIS. This was removed with clear margins. I was subsequently referred for radiotherapy & had appt last week to discuss this with oncologist.
At the appt I was advised that I have a Van Nuys Index of 7 (intermediate) & that radiotherapy may not be necessary so I can have it if I wish or I can decide not to have it. I had understood that a high grade DCIS should be treated with radiotherapy to reduce any reoccurrence & I am now really confused.
I have been advised that should the DCIS reoccur at some future point if I have radiotherapy this time, this will not be an option secord time around. However none of us know what will or will not happen in future so a part of me thinks that I should take any treatment available to me now at this time. I do wonder if I decide not to have radiotherapy now, will I go forward worrying every day that I have made the wrong decision.
I am generally a positive person & I am used to making decisions but I feel somewat bewildered & am not sure which way to turn. I know that ultimately it has to be my choice but is anyone else facing a similar dilemma at the moment?
I recently had several changes to my recommended treatment whilst my hystology did not change, there had been 3 separate MDT meetings to discuss it and the outcome kept changing which really unsettled me. I phoned and spoke to the Breast Cancer Care supportline to get an objective view and I also had rung Macmillan supportline. They were both very supportive and gave the same advice, and reminded me I had a right to a second opinion if I was not sure or needed more information to help me make the decision. Talk to them, they are trained professionals, it helped me calm down and finally decide. In the end the reason mine kept changing was that one of my 3 tumours was Herceptin positive and would normally result in chemo and herceptin treatment but the reason they finally decided radiotherapy was enough was that my tumour was so small 4mm. I hope this helps
Hi there. I’ve now undergone 9 of 20 treatments, but am seriously considering halting this due to the side effects I’m now beginning to experience - dreadful pain and skin beginning to breakdown. A personal opinion is that you need to take serious account of the possibility of these side effects in your decision making, although as you say, at the end of the day and without the benefit of a crystal ball, only you can make the final decision. Good Luck x
Hi April201 i had wle and cavity shave to get clear margins for almost 3cm of high grade DCIS. I then had 15 sessions of radiotherapy. I am 49 and my consultant said it was to reduce the risk of recurrence even further and because of my age he felt it was necessary. I tolerated the treatment well - had itchy skin, some tiredness and some twingey pain - but otherwise was ok. I have returned to work on a phased return and am improving as time goes on - it is almost 3 months since all treatment ended!! I think we will always worry so you just have to make your decision and be happy with it. Go with whatever gives you best peace of mind xx
I was told by my Onc yesterday that my recurrence rate is very low after High grade DCIS and mastectomy with DIEP reconstruction. I have opted to have a boost of radiation, 4 onc’s in my MDT and they couldn’t agree whether I should have radiation or not. I went to the appointment thinking the risks would be shrinkage, skin changes and hardening, but was told there is a small risk of developing lung cancer after 20 years. I’m just not sure that it’s the right decision now. I’m 45 so potentially have a good few years left. I feel like the small chance of BC recurring would be easier to diagnose and treat than the small chance of lung cancer.