Judging by other people on here I’ve likely been on of the longest waits. I hope you get yours earlier than me. I did need to chase up they told me to wait two weeks after MDT meeting for appointments and if I never had anything to call back and when I did the referral for pet scan and to oncologist hadn’t been sent but after some chasing from me it moved faster after that. I do think Xmas also played a part as from what oncologist said after planning scan I would be the next week but to get the chemo and radio dates I had to wait till today. I think I’ve been an exception with silly delays due to glitches and Xmas and new year etc xx
Well I’ve got my PET scan on Wednesday next week. I’m dreading the results already I’m terrified incase there’s cancer anywhere else xxx
Oh Sarahnic try not to worry I know its scary but the pet scan will pick up if there’s cancer anywhere else this will ensure that all areas are treated so it really is for the best. Once you know what you are dealing with things will get better you cab then focus on treatment and getting rid of cancer.
The pet scan is fine I had mine in Edinburgh you go into a room and they take a blood test to check your sugar levels. Then you are infected via a canula with radio active substance you wait about an hour for the substance to go through the body then you have a scan it’s easier than the MRI.
I had my pet scan on the Wednesday and got the results the next day so hopefully you want have to wait too long.
Any questions just shout.
Take care xx
Thanks for your reply my pet scan is at Edinburgh royal infirmiry. My cancer nurse has said that they will probably call me the following Thursday with results I feel sick to the pit of my stomach about it. I also found out my staging when I called this morning aswell I’m a stage 2b. And hoping the pet scan doesn’t change this. The anxiety is unreal just now xxx
I am waiting to start treatment but I can so relate to the feelings you are going through. After my PET scan I was convinced that they were going to tell me that it was everywhere, but in fact it just confirmed what the MRI said. I know it’s hard not to worry and stress but that is not good for your wellbeing. Try to stay positive and strong and hopefully you won’t have to wait long for the results. Sending hugs xxx
Thank you for your reply. How did u find the PET scan? ive got mine on wednesday morning. xxx
Hope everything goes OK tomorrow with your pet scan xx
Thank you xxx
Hi Sarahnic how did you get on today?
Hey, yeah it was ok. Not as bad as I thought it was going to be. Went all woozy when they put the cannula in but think it was because they had to do it twice and it obviously I hadn’t had any food so was starving. Shattered now as I was up early. Dreading the results now xx
I had forgotten that you can’t eat beforehand. You get a good rest now. Once you get your results you’ll get appointment with oncologist to discuss treatment, then you’ll have your planning scans then treatment will start.
It’s horrible waiting on results just try and keep busy and try not to worry.
Take care xx
How’s the treatment going?
Hi @AMF last week was my first week and I was totally floored thought being young I would be okay but it wasn’t to be (I couldn’t even get myself a drink and was totally reliant on others to deal with my kids etc) I’m now on my second week and feel much better than last thankfully although very tired I’m keeping on top of the medication and that seems to be helping. How r u? Xx
@Sarahnic this is something that happens to me on every chemo so far (2) I go woozy when getting cannula in and be sick then I’m totally fine 10 mins after. I’ve never had any issues before With bloods or getting scans and cannulas and it totally threw me but it can be quite common they said. They use toddler cannulas on me now . Hope you get ur results through soon. Xx
Sorry to hear your first week was bad it’s strange how it bad for some and fine for others. Good that this week has been better. Just take it easy and accept help from others you’ve got this .
I’m fine back at work full time so still adjusting to that xx
Hi wondering if anyone can help. I’m currently laid in bed with what feels like a burn down below. Mid week it felt like a spot and was a bit stingy but now it’s really sore. I’m struggling to walk has anyone had anything similar or know of anything that will help. I’ve been gave zerobase but since getting home yday it feels like it’s getting worse. Xx
That sounds horrible. I’m not sure what would be best I was given zerobase and betnovate steroid cream. I was told to use the zerobase every morning and apply a thin layer of betnovate at night. I did this and my skin was fine except for a nail size area just above my pubic area which absolutely stung nurse said it was a radiation burn it took a while to heal and was very nippy I just kept using the zerobase and betnovate. Maybe you could search radiation burn and see if anyone has any info?
Oh steffi that sounds painful. I only used Diprobase but didnt have any burns.
I had an emergency number I could ring if I had any out of hours issues be it with chemo or radio. They could send a prescription to an out of hours chemist or if someone could pick it up from the hospital pharmacy. I never used the service- they told me if for not using it
Or have you an on call GP service available to you? You shouldn’t have to suffer pet x
I spoke to the out of hours helpline. I can hardly walk. It’s defo a radiation burn and is underneath and goes up towards my bum. Sorry for the too much info. I’ve been told to air the area (easier said than done with two kids). I’ve had to write off this weekend as I can hardly move. Luckily my mum is here just now to help and tomorrow I will be going to see the nurses when I get in for chemo. They gave me canesten too but I can only use that today and not on radiotherapy days. My auntie has brought me a cushion to sit on so I’m hoping that helps. Xx
Oh Steffi, this sounds awful!! I’m shocked that you’re getting a radiation burn like this, as the radiation should be directed internally and should be measured so as not to do this. Do have a talk with your nurses, and also you should have a weekly appointment with your oncology doctor? If you don’t mind me asking, where are you based for treatment? They will need to stop this getting worse.