if she tested negative then that is more reassuring as it puts you in the 5% category rather than the 40% category…
it maybe worthwhile asking for a referal to genetics if you havent already been yourself… they may not be able to offer any further information or advice than what you have at the moment but could be helpful to have a risk assessment for yourself and other family members.
Lulu x
My Mum died 4 yrs ago, but not from breast cancer, otherwise I would be asking her for more details. I have asked for a referal to genetics as I have a twin sister, who is obviously worried, and she has a 16yr old daughter too.
Clematis x
Hi Lulu and all, thanks for all the info. I hadn’t looked up the nice guidelines, but guessed they didn’t support MRI screening for DCIS.I was still refused an MRI even with HG DCIS that was largely invisible (I know it’s ER+, but PR and HER2 weren’t assessed). I’m having the bilateral mx next week as I can’t live with the risk. I think if I’d had the option of MRI screening now that I know I have high-grade DCIS, and if I knew the HER2 status, I might have had a single mx. Unfortunately, with limited resources the NHS has to make choices based on the greater good, and I understand that. It’s just not very nice when it’s you who’s affected! Best wishes,
Lynne
not sure if its any consolation but the risk of a contra-lateral DCIS after DCIS is less than 1% more than the general population and even less for an invasive cancer following DCIS, this is much less than for somebody who has an invasive cancer at the outset who have around a 5% risk of contra-lateral BC or DCIS and women with invasive cancers.
its unfortunate with DCIS as we cannot tell which ones will become cancer and which ones wont, but the risk is higher with high grade DCIS than with low grade DCIS, but generally the recommendation is to remove all areas of DCIS regardless of grade but there is some schoosl of thought that we are over-treating this cohort of women as many would never have gone on to develop into cancer.
Lulu xx
Yes I did see research similar to that Lulu, although I’ve also read that high grade DCIS will become invasive high grade cancer. My main worry is that my mother had DICS along the same lines as mine, then developed contra-lateral invasive G3 later on. I know my choice is not objective in terms of probability, but I’ve researched extensively and thought and thought about it. It’s a tough thing to work through! If I had confidence in the mammogram, and the MRI weren’t so complicated, I might be making a different choice. Hope I’m making the right one, there’s no going back…
Best wishes, Lynne
there is no guarantees that any DCIS will or will not become invasive but many do appear along with invasive cancers, but HG DCIS doesnt meant you would get a high grade tumour, i had HG DCIS both times but grade 1 cancer 1st time and grade 3 2nd time… but some may never turn into an invasive cancer but who would really want to leave it to see.
they cannot tell risks of it becoming invasive as they wouldnt be able to get it passed ethics to research it… cant exactly say you lot just keep the DCIS and we will just wait and see if it turns invasive… but even with intermediate or low grade it can develop into cancer too, but the grade of the DCIS has no correlation to the grade of the cancer… just the HG is more likely to become invasive than low grade.
the best decision is the one you can live with… so try to think into the future eg 5 years down the line what would you feel most happiest doing… its a really personal thing and everybody makes different choices.
good luck xxxxx