First post here as recently diagnosed with DCIS. I was initially told pre-invasive. Then at a follow up appointment ten days later they changed their mind yesterday and told me invasive. That’s thrown me a bit, but what they also told me at that appointment was that the planned surgery to have a mastectomy with implant reconstruction to include the Sentinel lymph node biopsy at the same time would now be two surgeries (SLNB then SMX) due to a change in policy that happened yesterday! To have to split this into two surgeries seems unnecessary. They even said if I was at the appointment on Monday, not Wednesday, I’d still be having one surgery. Has anybody else been told they have to have these two surgeries separately. I’m self employed and live alone so this change in policy has a big impact on all the extra time and recovery it will take. I’m really confused and they didn’t do a very good job of explaining why they were changing things. Any input really appreciated.
Welcome to the forum , I’ve not seen any discussions about this change in policy as yet . Did they explain why it’s been changed , is to do with you having reconstruction at the same time ? You’d think they’d want to avoid 2 trips to theatre ? You could ring the breast care nurses at your hospital and ask to discuss this ?
You could also post in the Ask our Nurses your questions section of the forum see if they know about this ? Or give them a ring
Thank you for the advice. It was all very vague. The breast surgeon I met with (my breast nurse was in the room too) didn’t seem very knowledgeable. I really stressed how one surgery is so much better for me, as originally planned. She said she was going to speak to her manager today so maybe I will get a call later. Or I will certainly reach out to the contact points you have suggested. I was feeling very at peace and preparing myself for a pre-invasive DCIS one op mastectomy and yesterday just seemed to shatter all that and back to processing a different diagnosis and plan. I’m new to all of this, maybe lots of changes along the way is normal. x
It’s a roller coaster to begin when first diagnosed and yes plans do change as more information about your cancer is collected . But you are entitled to understand why things change and to ask questions about it . It’s hard to take everything in at an appointment and the nurses are usually happy for you to ring and as questions afterwards . It can be helpful to take someone else you trust to your appointment to listen to the information too , I asked the nurse to right somethings down for me so I could look it up afterwards - everything can get jumbled in your head .Theres lots of support here if you need to talk things through with people who understand .