Hi - it’s my first post here. I was recently diagnosed this year with non invasive DCIS stage 0, 3mm. (age 57 almost 58) I had it surgically removed and it was contained and the margins were clear. The surgeon from the start has said I’ll be fine and explained the fact that it was contained and therefore not invasive. I was so relieved with all of that news. I guess I was focused on getting that spot removed but wasn’t really thinking about a new recurrence as much. Now that the surgery is behind me, they are recommending radiotherapy in case stray cells got loose, and hormone blockers because it was 100% estrogen fed to help stop it from recurring in another spot. I guess i was thinking / hoping that I wouldn’t need any more treatment except for monitoring, after the surgery. I want to do what is best of course, but the side effects of the treatments, esp the hormone blockers terrify me. I have become sort of depressed during this donut hole phase - before I make the decisions (waiting on healing from the surgery for the RT and then the hormone blockers after RT). Thanks for letting me vent - I’ve had a weepy couple days weighing it all over in my mind. I also feel a weird sense of guilt that I had an early stage and am complaining at all. 
Hi. I’m glad your surgery went well. Try not to get too caught up with worrying about side effects. You usually only hear the bad experiences many people don’t suffer too much with side effects. Everyone reacts differently,so give it a try and see. There is always different alternatives if you have too much of a problem. I’m almost 4 years in with my treatment the radiotherapy was fine and while the letrozol has had side effects it’s been doable. As for feeling guilty, don’t. Sitting in that room being told you have cancer is as bad for everyone no matter what stage or type of cancer it is. Yours was just found earlier. Good luck with the treatment you’ll be fine
Thank you so much for your response. I truly appreciate it. Do the doctors usually keep an eye on your bones and heart for any changes while you’re taking the blockers?
I had a dexa scan before I started letrozol but haven’t had a follow up. I questioned it but was told I didn’t need another one. I haven’t had a check on my heart either. The only check up I have is the yearly mammogram. I don’t know if it depends on the area you live in. Just ask if you have any more questions
Its not a nice feeling whatever stage or grade you are diagnosed with. Never feel guilty or that you cant be worried. I would suggest you take whatever treatment they are offering. I had a diagnosis of multifocal 33mm intermediate grade DCIS in 2004. Although most of my friends were supportive a couple kept telling me I was lucky and thet it wasnt really cancer. It was very upsetting and one of them was a nurse!
At the time I had mastectomy and immediate LD reconstruction with implant and no further treatment. All check ups were clear until last year 2025 and I had fat necrosis in the reconstruction. It turned out it was hiding a grade 2 invasive recurrence from my original DCIS. The surgeon said it was probably dormant cells left behind after the mastectomy that had woken up for some reason. Maybe if I had had radiotherapy at the time those cells would have been killed off.
Diagnosisand treatment of DCIS seems to have come a long way since 2004. Hope your recovery goes well and that you can make the right decision for whatever feels right for you. Xxx
I am deciding whether or not to have hormone therapy ( it was optional for me ) but I have requested a baseline dexa scan and blood tests . I am having the 5 sessions of radiotherapy - was also optional but I’m scared to do nothing . Mine was stage 1a grade 1 IDC .
I’m planning to to radiation too. Hopefully it goes well with no problems. I’m wondering about the hormone blockers for 5 years - are you prone to having a secondary cancer after youre off of them ? It’s all so overwhelming.
Hi
Its a long road when you find yourself on it, and if you think British roads have lots of potholes, the cancer road has plenty of those, and much more to handle.
I’m 18 months down the road, the early days are the worse. As you are discovering, it’s a relief when you get it removed but then you have other things to think about. I had RT, it’s painless to receive, I did have a skin reaction which healed within a week, and I did (still do) suffer with fatigue, but this has got better over time.
Hormone therapy has been relatively kind to me. Yes I get hot flushes, a couple late evening which I feel have eased off over time. My joints are a little stiff if I’ve been resting, but only lasts a minute or two when I get moving. So, nothing serious enough to stop me from taking the tablets.
All medications can cause side effects, only you can decide which you can accept and you wont know that without trying them first.
I read the comment about recurrence or secondary. This never leaves my mind. Hormone therapy has research, proving it is an effective method to prevent recurrence. The aim is to stop any regrowth, so it can help prevent a secondary from developing.
There are some positive things to take from your diagnosis, the type of cancer DCIS is non-invasive. Of all the cancers this is the less likely to have spread, and it’s small which also goes towards a good prognosis. Unfortunately there are no guarantees but these are all indicators that it can be treated successfully. The post-op treatments are offered as a back up.
You’re still in the thick of it at the moment, but hang in there and try, if you can to remember those positive points. It will get better x
Thank you so much for responding. I am so glad to hear that RT wasn’t horrible and that you don’t have many side effects from the hormone blockers. I don’t know how to not feel like I have a black cloud over my head wondering if it’s going to return.