Hi everyone, I had a routine mammogram after turning 50 and was diagnosed with DCIS stage 0, intermediate on Christmas Eve.
My target date for treatment was 6 February but I haven’t had a treatment plan yet and the uncertainty is getting harder to deal with!
I’ve got 3cm DCIS in my left breast. Another micro calcification 15 mm away is benign and I’ve just had a third biopsy on another area and am awaiting the results.
Since November, I’ve had an ultrasound guided biopsy, a mammo guided biopsy, an MRI, a second ultrasound and a stereo mammo guided biopsy.
I wear a 34C bra but the Dr said I’m probably more like an A/B cup so if the third area is also DCIS, they will do a mastectomy.
I was told by a nurse that it’s ER+. I have had months to think about all this and wonder when and what I’ve got to deal with.
Has anyone else had to wait this long? People keep telling me I should have had treatment by now but I feel maybe it’s good as they are being thorough. The consultant said her life would be easier if she did a mastectomy on everyone. She said they want to get it right and do one operation which I understand but it’s been a long wait.
I’ve got so many questions about reconstruction and yet I’m also trying not to think about it in case I don’t need it.
Really weird not knowing what I’m having, how long I’ll be off work for and when I’ll have treatment. I’m hoping to hear about the third biopsy results next week or the week after.
I would imagine they will give you the treatment plan after the biopsy results to ensure they give you the best plan for your diagnosis which it sounds like your consultant wants to ‘get it right’. Waiting is always the worst part of this journey but before you know it you will be on the road to recovery. From what I understand most surgeons will perform a mastectomy if you have smaller breasts to make sure they have clear margins. Good luck with your results hopefully you will be a lot clearer real soon. Take care.
Im sorry that you’re going through this <3 sounds like such a worry to wait.
I was diagnosed with 10cm DCIS stage 0 in Oct last year, I was 35 at the time, cup size D. Because the DCIS was so extensive, lumpectomy was not an option for me. I had a single mastectomy (nipple removed) and reconstruction at the same time on 30th Dec. I am healing really well so far and have psychologically adjusted to my new breast well. The surgeon did an amazing job and I have a horizontal 3-4inch scar which has healed beautifully. In time I will get a tattoo and see about further aesthetic treatments if needed. The physical healing had taking time, but the pain wasnt as bad as I anticipated thankfully.
With all of the reading I’ve done about DCIS, some women can have it up to 2 years before it becomes invasive, so I feel immensely lucky to have caught it so early. My advice would be to read up as much as you can, this website and these forums were brilliant, and to consider your consultants expertise.
Due to my age, I’m currently going through egg freezing as I will be taking hormone therapy too for the next 5 years. The hormone therapy took a little while for me to accept and get my head around, but I feel I am in a more accepting mind now. It can feel ao overwhelming to have to make so many decisions, but I promise it gets easier, and if you have any questions, please ask.
Hello
I think you should give them a call and chase this up and emphasize that the prolonged wait is causing you anxiety.
Hope it all goes well for you. X
Thank you all so much for your advice and for sharing your experiences. I checked ouc for a while as I’ve waited so long that I pushed it to the back of my mind.
I’m pleased to say that after three biopsies, I’ve only got a 3cm area of DCIS and although it’s very close to my nipple, the surgeon is going to do a lumpectomy instead of a mastectomy. They think they will be able to get clear margins but have warned me that I have to be prepared for another op if not. I’ve got a small cup so they said I may have to have follow up cosmetic surgery. Not sure what that will involve? Lipomodelling?
Thank you again, I really appreciate your replies.
xx