PET Scan Wait

Hi SMG24 

It does seem pretty typical-I know we all want things done as quickly as possible but unfortunately that’s not how the system works. 

There’s a lot of waiting, both for scans and then results and a plan. My first line treatment started about 6 weeks after my scan results. I waited about 6 weeks for my post treatment mri results. When I needed a petscan, I waited more than a month, and even longer for my treatment after that. Managing the waiting is difficult, I understand that very well, but resources are stretched in the nhs and it’s unfortunately how it is. I had to go to a different hospital for my petscan as my own hospital, a specialist cancer hospital, didn’t have the facility to do it.

Sarah xx

Thanks for your reassuring response. It’s so hard not to feel like I’m going crazy waiting on everything.

Did you have a PET scan at your initial diagnosis to work out the staging? 

I just had a CT scan and an mri at my initial diagnosis, and that was sufficient to determine my stage and exactly where my tumour was located. My petscan was done when my cancer unfortunately recurred and it was important to work out what should be the best course of action in my particular situation,

However, lots of other ladies have had pet scans at the time of their original diagnosis, so it’s just part of the process.

Sarah xx

I am also awaiting a pet scan to be staged… I’ve had a CT scan and an MRI which confirmed no metastasis but there’s a query as to how close the cancer is to my bladder, I’ve got no appointment as yet..  my CNS is chasing it up this week for me… the waiting is really hard but Its also giving me time to process the information I do have and get things organised as much as I can at home.. I’ve researched every outcome and all treatments read lots of other people journeys and started writing a list of questions… Hope your scan and results come around quick for you x

Sorry to hear you’re going through this as well. Hopefully your scan will come round quickly. 

I’m also trying to get everything sorted at home, trying to declutter and organise everything as much as possible. The to do list is never ending but I’m hoping it will make it easier to rest and recover after treatments. I think it’s a good way to keep occupied as well. 

I heard today that I’m being referred to a radiotherapy consultant, so I’m happy that treatment plans seem to be moving forward somewhat even though I’ve to wait on the scan.

Hi SMG24,

I was diagnosed with Stage 3C in December 2022 and had an MRI scan early Jan 23 , I then had PET scan end of Jan 23 and started my treatment Feb 20th 2023 . I had five weeks chemoradiotherapy and three days brachy and I’m now in remission. The wait is excruciating i know and keeping busy worked for me too . Even though I tried to stay positive I still some days thought the worst which is normal (I know now) . I completely understand how you feel and can only share my experience - I hope your scan comes through quick now for you - once things move they really move and the radiotherapy consultants and team are fantastic. 
sending you lots of positive thoughts and love at this really difficult time xx 

I’ve had a call for my PetCT this Friday and seeing the consultant on Monday.. the results probably won’t be back but at least meeting the consultant and having an idea of what my plan will be like is a couple of steps in right direction… 

glad things are moving for you too.. 

Thanks so much for your reply, it gives me hope hearing other positive stories. 

That’s great news Chloe, I actually managed to get a cancellation this afternoon for a pet scan this Friday. So it’s been a huge relief. I hope all goes well for you

That’s good you got a cancellation, I hope yours goes well too