Result times.

Hi Crystal. 
the fact you are messaging at 2am would suggest that you are lying in bed , mind in a whirl,  asking lots of ,at this time, unanswerable questions and in the process have already decided the results of the CT scan that you haven’t yet had. 
I/we get it. I/we, members of this support group know and understand what you’re going through and that that the waiting game is very scary. It’s no surprise then you are experiencing more severe pain tonight along with night sweats and fatigue. You can’t put your mind to anything else. Would I be right?

When I was first diagnosed (it’s quite few years ago now) I’d had my US and CT scan the week before Christmas and was in your position over the festive period asking and agonising over the same questions that you are now while it seemed  the rest of the world was having a grand knees up celebrating Christmas and New Year. I won’t lie to you I felt lonely and very scared despite having a few close loved ones in the know. I got my results the day after New Years Day. Pretty quick in the scheme of things but as I said it’s few years ago now, before the current NHS situation with long waiting lists, staff shortages and impact of industrial action. So be prepared for a less than instant result to your scan. It will come as soon as. No one is going to make you wait any longer than is necessary. 
When that time comes a lot of the questions you are asking now will seem irrelevant. IF I repeat IF the results come back positive you have a tumour plans will fall into action with your Urologist and you will be able to ask the right questions then. 
In the meantime try not to pre-empt the outcome. Easy to say I know but it really serves no purpose and will only exacerbate the pain and worry you are experiencing now. 
Wishing you well and always here if you need to chat. 
Rojan ️ 

Hello Rojan,

Firstly, thank you for your reply, it is much appreciated.

I actually hadn't really been worrying too much until last night, but the pain kicked off and after a little bit, caused me to start to worry. I am very much usually someone who doesn't worry about something until I know I have something to worry about. 

I am not resigned to anything, just concerned, but I like to know worst case scenario, then I can be aware of what the worst might be, and so that is where I have the questions. I feel more comfortable knowing what 'could' be coming, I am autistic so it is likely the reason why. I HATE, not knowing about anything. 

I do have a lot of health issues already so it is entirely possible for me to be more sensitive to any pain in my body. 

The other symptoms are ones I have had for a little bit, they weren't happening last night, such as the night sweats, they won't been set off by stress when I had no idea of what it might be. I fully understand self fulfilling prophesies and how much staying positive can, again, so can being prepared with knowledge. 

It must have been frustrating waiting over Christmas with the delays!

I hope you are having a lovely weekend.

Crystal.

Like you, I had an US first and as a result I was referred to Urology.  I had my CT scan on 11th November 2021 and the results at my Urology appointment on 24th November, all in person, face-to-face.  

We all hate the waiting, and the stage you are at, it's pants.  We all get it.  

I wouldn't start contemplating any next steps yet.  It's far too early and surgery is not a definite approach.  For example, I've not have surgery but the treatment is going A1 and I'm living life like a "normal" person.  

Hello Mmum, 

Thanks for your reply! 

This is going to be a horrible wait, once I know, I know and can figure out a plan, if one is needed,  I have autism and the unknown is a really hard thing to cope with because of it. I very much prefer to know the worst case scenario, it prepares me for it to come, I'm not expecting it to be, but I guess it makes me feel more prepared with knowledge IF I need it.

I'm so glad things are going so well for you, that's brilliant news!

Hi Crystal 

I'm new here too and can relate with all of what you are saying! The waiting and anxiety is just horrid! I've been trying to keep my mind off it by doing craft stuff, going to zumba and aqua aerobics and being around people as much as possible. The night times are the worst though, I can totally empathise. Try and take 1 day at a time, even an hour at a time if need be, keep away from Dr Google (yes, I'm guilty too haha!) Keep positive and healthy

Back in 2014 a small lesion was found during ultrasound, after a following CT it was determined that it was just a cyst and no more was done or said. So I hope that will be the case for you too 

This time I had a mass found on my kidney and enlarged lymph nodes during a CT scan for something totally unrelated, I was told on 10th of May and referred to the Urology MDT. Saw urology prof on 31st and have a PET scan booked for a couple of weeks.

You're not alone, keep chatting on here if you need to, take care 

Vicki x

Hi Vicki, 

Firstly, thank you for your reply. 

I do like crafts and I'm disabled so exercise isn't much of an option for me unfortunately, not to mention in quite poorly, I'm between sleeping and awake, gaming to distract myself from feeling rubbish. 

Honestly, I feel like information is at least giving me the ability to be prepared for what might be to come. 

In the past with my health (it's always been pretty rubbish), and new issues, I have always known something was up but never felt is was anything serious, life changing but not serious. This time, I'm pretty sure I know what my consultant is going to tell me, I can't explain it, but I would rather be prepared for the worst and it not be the case than to be drop kicked and it be the big C word. 

I was told it is likely to be a tumour, there's no reason for scarring, I don't know why a cyst hasn't been mentioned, but only time will tell. I'm in between headspaces of, well, no point worrying or panicking because what will be will be and it won't change the outcome, and picturing telling the people I care about that I have cancer and their faces and hurt. I'm more worried for those around me, and my animals. 

I also know from research that usually the symptoms you can get (which I have had since before I was told something is up), are not usually present until its pretty advanced and I'm really not very well. I'm doing my best not to let others around me know how awful I'm feeling, and this is from a chronic pain patient for the last 5 years. I know how to cope with feeling awful, this is just another level. I haven't told many people, I just don't want people worrying. I feel like if it isn't anything major than I am absolutely ridiculous, but I also know myself and I don't get symptoms from worrying etc, I am either in pain or poorly or I'm not. 

I'm sorry you're going through the same Vicki. I hope your PET goes well and that iits good news for you. 

Crossing my fingers for us both. Please keep me updated and I'll do the same. Xx