I haven’t been on here for a while as just trying to get on with life but I just wanted to ask about otherems experiences during follow up.Originally diagnosed with stage 1b1 adenocarcinoma, well differentiated but unifocal lvsi though my consultant wasnt concerned. Had a radical hysterectomy in Jan 25 and all came back clear so no further treatment. Have had 4 monthly check ups which have been clear, and an mri last August which was clear. I feel I have been healthy since with no symptoms etc.So 3 weeks ago I had my 2nd follow up mri but I haven’t heard anything yet, with my first mri I got a letter after 10 days saying it was entirely clear and he would see me in due course at my next scheduled appt which was 9 weeks after the mri.So I’ve been waiting for a letter but nothing so rang the secretary but she said it’ll be discussed at my scheduled appt in 2 weeks time.I know no-one can reassure me but I’m not sure why I had a letter last time but not this, I am spiralling thinking its different because they found something because why would they make me wait if it was all clear? Is this normal procedure? Could I have had a letter last year because it was 9 weeks until the appt? I feel generally well other than tired from recent health issues but just wondered if this is normal procedure, kind of think if there was a problem they might have got me in earlier, it’s just torture!
Hi Seffie
It can be really difficult not to spiral around scans and results, and one of the things I know I could be guilty of is reading too much into things and overthinking everything.
All hospitals do things differently-for example I only got appointment letters for scans and also results and was never told anything in a letter or over the phone because their policy is to have a face to face appointment for everything. I’ve had long waits for appointments sometimes, shorter waits other times whether the results were clear or not, so I’ve learned to stop with the overthinking! It only made me more anxious.
I waited 9 weeks to have an appointment after my first post treatment results, got told nothing in a letter, and I was NED, so my worrying had been pointless. It was just how the scheduling of my consultant’s appointments worked and how busy he was.
At this time of year, staff shortages might be playing a part. If your consultant is on leave, there’s no-one to type and electronically sign a letter so it may be delayed because of that. This time, you’ll be 5 weeks from the scan to the appointment which is an eternity for us, but in my hospital was very normal.
It’s impossible not to worry, I understand that, and none of us can say all will be fine, but sometimes it helps to look for a logical reason like staff holidays. The secretaries cannot, or at least should not, discuss results with a patient because they are not qualified to do so.
So the wait goes on…but ultimately you cannot change whatever the results are and you’ll probably drive yourself crazy trying to imagine what they might be. It might have helped a bit to share your worries here at least? Sometimes getting things off your chest and putting them in black and white helps with rationalising your fears.
I have come to understand over the years that what will be will be, so that’s how I try to look at things now.
You’ve had good results before, feel healthy and are not having worrying symptoms, so these are all positives to hold onto while you wait.
I really hope when you have your appointment that all will be good and you can relax again. As time goes by, the risk of recurrence reduces but I do appreciate it’s hard to put it out of your head completely. It gets easier in time, or at least it has done for me.
Wishing you well, and I hope you’ll let us know how you get on.
Sarah xx
