Morning all, just wondering how long you had to wait for your surgery or treatment to begin after your initial diagnosis?
I was diagnosed on 20th August, and further biopsies confirmed another area of high nuclear grade DCIS which totals more than 4cm & need a unilateral mastectomy. I was told there’s a possibility there may be some invasive cancer in there but obviously won’t know until after the surgery. I was booked in with the senior nurses for my reconstruction counselling on 3rd Sept, then to see surgeon on 25th (yesterday) which was changed to 30th, then was changed again yesterday to 1st Oct. That will be 6 weeks and still no pre-op or surgery date.
We are supposed to be away for a week from 4th Oct & I asked the consultant if we should cancel & she said no, we can time it so everything is done beforehand, go away to Wales for the week & then have surgery scheduled for when I’m back. But now, unless we cancel or come back, the pre-op isn’t even going to happen before we go away.
The letter yesterday tipped me over the edge, it was a complete overreaction but I got myself into such a state because it’s been changed again, now my third date for this appointment, and I had an absolute meltdown and hid in the bathroom as I didn’t want my son to see me sob like that. I just need the mastectomy to happen & I just feel like it’s getting further and further away, like I had this bombshell dropped and then someone hit the pause button. So realistically now, unless we cancel the holiday, it’s likely to be 8-10 weeks before I have the mastectomy.
Just curious how long everyone had to wait. Maybe I am overreacting but I was ok with that timeframe and now as I say, I just feel like it’s getting further away all the time x
I feel for you so much. When I was diagnosed last year I was given a date at my results appointment for two weeks later. Great, I thought, this will all be over and done quickly. Then MRI threw a bit of a curveball and so it was cancelled while more tests were done. Surgery was scheduled again, then cancelled a second time because MDT didn’t agree the plan and there were expert opinions sought and whatever else. I ended up having surgery seven weeks after diagnosis. It was excruciating at the time, so I truly get how you are feeling now. But, what I would say is that although it feels like an eternity at the moment this part will soon be behind you. Hang tight. x
I had similar experience, was diagnosed with DCIS 12mm July 24, and was given date for surgery at that appt, had lumpectomy Aug 24. My margins were not clear and size was not clear, non calcified DCIS. Advised to have mastectomy which I had in oct24 and they found 10cm of DCIS.
Have you thought about changing Trusts? As a patient you can choose which hospital you want your care.
I was told results would be 7-10 days and both results took 3 weeks so prepare for longer wait
My NHS Trust was very quick and timely from diagnosis to surgery, however once cancer out I have found the follow and support with complications poor, so I would also ask questions about timescales for follow up tweaks
I was diagnosed on the 2 June with DCIS in both breasts and also a further IDC in the right.
I’ve struggled with how slow things have been! After being told to prepare myself for things to move quickly at my initial appointment!!!
My plan was right mastectomy with immediate reconstruction and a left sided lumpectomy and also lymph nodes on my right.
It seemed to take forever to get an actual surgery date, I was finally given a date for Mid August, but 24 hours before they cancelled my operation as my consultant was off sick.
I then waited a further 4 weeks and finally had the operation on the 19 September. (Almost 16 weeks after diagnosis)
My surgery wasn’t even done by my consultant as she’s was off sick again, so 2 other surgeons came in on their days off so they didn’t have to cancel me again! I was incredibly grateful that they did this!
I do worry it had taken the 16 weeks and what might of changed in that time.
I found I had to stop myself second guessing when dates might be, as it changed nothing and stressed me out.
I hope you get a surgery date soon and all goes to plan xx
Thank you so much for the replies. Wow @lb12678 that’s a long time you had to wait, that must have been so stressful for you. How is your recovery going?
I phoned the hospital on Friday as I was so stressed out about it & worried that it would be pushed back again. I spoke to the consultants secretary & she was really good & has assured me the appointment will go ahead on Wednesday & that I should have a date for surgery by the end of it so hopefully, I will have a plan in place this week. The senior nurse also phoned me & we had a good chat & I feel better for having spoken to them both. I think part of the problem is my surgeon is the clinical lead (I didn’t know this when I chose to go with her) & she is very busy. She has one theatre day a week & is currently booked up until mid October so we are hopefully looking at w/c 20th Oct.
