Follow up scanxiety

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

thanks so much Sarah ️ since posting i have tried to be more rational, i probably had a letter last time because my next appt was over 2 months away, they haven’t called me in any earlier, its standard for most hospitals, its holiday time, i read something that said only worry if they tell you something to worry about snd like you say, worrying wont change the result either way, it’ll just make me ill and unhappy so i’ve decided to put it to the back of my mind and deal with it on the day and just hope everything is clear. Thanks Sarah, much appreciated

Sarah xx

Hi Seffie 

Slightly different for me as I don’t have scans, just checkups every three months, however my experience with letters/emails/phone calls has been very varied from appointment to appointment. Sometimes I’ve had a phone call to make my appointment, sometimes a letter through the post, sometimes a letter has been uploaded electronically then I’ve had a notification to log in to check what’s been uploaded. The same with the follow-up letter after my checkups - sometimes through the post and sometimes uploaded electronically. At my hospital, there seems either not to be a standard procedure or there is one but it’s not necessarily followed. So hopefully it’s just a case of something like this for you following your MRI. 

Sending love and best wishes,

Louise x

thanks for your reply Louise, much appreciated. I was just expecting to get a letter like last time so it threw me abit but from what i’ve read ots standard to give results at scheduled follow up. Thanks sgain and i hope you are doing well x

Hi Seffie, 

Nice to hear from you again on here although sorry you have this anxiety. I understand how difficult it is to be waiting. 

My experience has been very similar to both you and L2025. I had 1b2 Adenocarcinoma, and a radical hysterectomy in Dec 23.  I am now on 6 month follow ups but so far no scans just internal examinations. 

Glad you are feeling a little calmer, I will just say that I found the NHS app very helpful with notifications, test results  and  clinic letters. I know it is not for everyone and you do get a generic  warning about sensitive information but I don't like waiting for phone calls and letters and the app makes me feel a bit more in control. Obviously it does depend on your hospital. 

I wish you all the Best. 

Serena77 

Hi Serena good to hear from you too, I often think about you and wonder how you’re doing, sounds like you’re well which is great! I do have the app but there’s nothing on there, not even last years mri report, other than the letters which I already have.

I’m just trying to tell myself that if they were concerned they would call me back in earlier like they did when I was first diagnosed. Obviously I’ve googled it and it just seems that this is standard procedure, maybe the letter last year was so I didnt have to wait over 2 months, idk you can drive yourself crazy. So far all follow ups have been clear but its always there at the back of your mind. 

Just hoping all ok, i’ll update when i know and just need to get on with life as best i can while i wait but its no fun.

Take care and stay healthy!!!

Sarah xxx

Hi Seffie 

Yes, I agree. Not long to wait now. 

Do update when you can. 

Thank you and You take care too. 

Serena77 xx

Hi again so just an update-had my follow up appt yesterdsy and thankfully all good, MRI was clear and physical exam also clear! I said it had been a long 5 weeks and that last yesr I had received a letter after 10 dsys, he apologised and said they had changed procedures or something but that if there had been an issue they wouldn’t have left it 5 weeks. He was happy with everything so obviously it was a huge relief!

Thanks for all your support

Sarah xxxx

Hi Seffie Sarah

That’s really good news for you-what a relief! Hope you can relax now and get on with life.

Sarah xx