Last September my mammogram came back with a small concern - I had a small cyst in my left breast. At the appointment I mentioned that I had had a slight discharge from my other breast and three biopsies later I was informed I had low level DCIS (after being told initially it was a blocked milk duct, which was usual for my age!). I have now had 3 operations in the last 3 months. My second operation was a surprising (to me) nipple removal . My margins have never come back quite right and now I am told they have found further but intermeddiate DCIS so I am booked in for a single mastectomy in 4 weeks time with an implant reconstruction rather than more investigations. The problem is my breast has had so many ops that it is sizeably smaller and I am told I will need to have an expander and then another op for the final implant.
I’m pretty resilient but this journey feels overwhelming - the drains / sleeping sitting up / the expander / the ops / the hope then disappointment. Advice or words of encouragement much needed at the moment especially as I do have a slight imposter feeling here being DCIS.
Dear Freda
Firstly welcome to the forum, I’m so glad you have found it. There’s an amazing source of information and support here from the amazing nurses to fellow travellers on this nasty journey.
It sounds like you’ve had a really tough, drawn out diagnosis this past year.
Please don’t ever feel your pain, worry and suffering is somehow less worthy because you are “just” DCIS.
You have been through a major life trauma, and are still facing further massive operations, that’s a lot to cope with.
There is a specific DCIS thread on the forum where you will be able to get more specific advice.
I’m a lucky one on the other side, following lobular cancer last year with single mastectomy, expander implant reconstruction and subsequent second implant reconstruction and opposite side reduction and lift. I’m now on 5 yrs Tamoxifen and monitoring.
I too felt at times I didn’t have real cancer because I didn’t need chemo and only had a mastectomy! Looking back Id like to give myself a bloody big hug and say, this is really shit and it’s ok to be scared, angry and want my old self back.
It takes time to adjust, and the worry, constant pain and recovery will take their toll. But with the right support ( I did start counselling a year after my diagnosis) you will get through this horrible blip in your life.
Be kind to yourself lean on others when you can.
Always here if you want to ask any advice re expanders / mastectomy etc,
Wishing you all the best of luck with your operations.
Caron
Welcome to the forum @freda
To echo @caron please don’t feel like an imposter. There are many kind people on the forum with lots of different experiences and your feelings are completely valid.
We have an area on the forum that you may be interested in, as you may find more experiences similar to your own: Diagnosed with breast cancer/DCIS/LCIS topics - Breast Cancer Now forum.
Please know if you ever want to chat things through, our breast care nurses are here. They can be reached on our free helpline on 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
Thinking of you,
Lucy
@freda hope you are doing okay.
I’ve had a similar situation this year with Paget’s disease in the nipple which then turned into lots of biopsies and then high grade DCIS. I had a mastectomy in April with an expander (nipple also removed). I will have a further op for a permanent implant after radio therapy.
I actually really love my reconstruction and was so surprised by the results. Happy to answer any questions is you want to chat. My whole surgery and recovery went really well and I was back to work 4 weeks after.
I’m a planner for a living so it was important to me to focus on what I could control. Moving my body, eating lots of good stuff (a lot of cake was included) and being kind to myself xx
Thank you so much for the enthusiasm and positive outlook - the operation is really not what I am worrying about, it’s the after care preparing for it and how much help I’ll need after. Single Mum with a 19 yr old son!