I’m so confused!

Exactly that - they're probably just checking as part of their ongoing care program for you. And the PET will show more detail than the standard CT so that has to be a good thing. Both CT's & PET's are also used to rule out cancer which is what happens most of the time...

You know we incorrigibles have a word for this... It's called scanxiety!!!

I have my nine month from diagnosis scans next Friday but I really put myself thru the wringer on the six monthlies after which I vowed not to let it happen again (well... not too much!)

Fairly calm this time & Que sera, sera!!!

Stay Strong

SiT

Hi missconfused, welcome to the online community. Not knowing your background and why you have already had 3 CT scans, I wouldn’t like to guess as to why they have asked for a Pet scan. But I would say it sounds like it is a good idea to have this just to rule anything out.  If you are concerned as to why it has been requested, then I would suggest phoning the hospital and asking why? I take it you just got a letter without any discussion about this. There will be a contact number on the letter.  
I hope it is just precautionary, and wish you good luck. 

Hi everyone

Thank you so much for your kind replies - I feel they’ve helped relieve my anxieties a bit.

 I’ll try and explain the story a bit here...it’s not regarding myself by the way but a family member.

So back in November 2019 family member was sent to hospital with high blood pressure and a bit of breathlessness, but nothing chronic. Prior to this they were fit and healthy, no drinking, no smoking. Really well. They thought the high blood pressure could have been due to a blood clot so a CT scan with dye was done. This showed up what they referred to as a nodule on the lower left lung I believe.

As we left the hospital they said we would go for a PET scan, but as we walked through the door at home the hospital called and said it wasn’t necessary as on second thoughts viewing the scans the nodule seemed to fit with all the aspects of just being scar tissue from a leftover previous illness. They said another CT would be taken in March, just to monitor things.

Fast forward to April 2020 and we had a chat with the consultant who said the same thing while showing us the scans, that it seemed more than likely that this was scar tissue. Another scan was done.

They had a consultant meeting (not sure of the correct name) and a letter was sent to us to say again, it presented as scar tissue and not to worry. A repeat scan would be done in several months time.

Fast forward to December 2020 and the repeat scan was just done. A letter was first sent to us saying the consultant would call to discuss things with us in a few weeks. We assumed that meant all was well.

Then, this week, consultant called family member and said they wanted to do a PET scan. He didn’t offer any reasonings why and because she was in shock , she didn’t think to ask. Now we just had a letter saying the scan is due next Friday. 

I’m trying to think positively that this is just a case of them crossing the T’s and dotting the I’s so they can say right, it’s all good, have a follow up CT in a year.... but I’m really afraid. What if something has changed and they’ve gotten it wrong this whole time?? 

If something was cancerous surely it would have shown growth in the period from November 2020 to April 2020? That’s all I keep thinking...and besides this the family member is still well (apart from the blood pressure and breathless on rare occasions). She goes on long walks without having breathing difficulties, no cough, a voracious appetite still, no weight loss.

I just can’t put this mystery together and after so long we just want to know what we are or aren’t dealing with. I’m sure you all understand when I say it’s so difficult to live with this shadow hanging over you all the time...

It will be a long wait until next Friday and indeed the results from that. All I’m trying to do for now is cling on to hope and positivity and carry on as normal... but it’s hard. This person is my whole world and without them I’m not sure I could function properly.

thanks again 

Yes the not knowing is certainly very difficult. All of us here have been in that position, and your mind does start to go into over drive with worry.  As SiT has mentioned, we go through this scan anxiety quite often, and it's not something we ever get used too. Good luck for next Friday, I hope you get the answers soon. 

Hi Misconfused, a PET Scan uses a Radioactive element fluid which is Glucose based, this shows up any cells in the body that have a high uptake of the Glucose  they show up because of the radioactive element in this fluid, the PET Scan will also show up non malignant cells in such things as polips, I had one showing up in my Colon, after a colonoscopy, this was removed and found to be non malignant, as others have been in two past colonoscopy's I had, pity my Lung tumour was not the same, the PET scan also showed up two nodules in my lungs, which on diagnosis these have been classed as indeterminate, and require interval survaliance, in other words, if they do not grow in size they are probably non milignant.

PET Scan is a very useful tool for oncology, I think in the case you have put forward, they will just be trying to make sure there is nothing unusual happening and this PET scan will aid them in making a diagnosis.

Hope this helps

Hello! 

Thank you, this does help to hear. I’m really trying to remain in positive thinking mode and also keep telling myself that this is just being done to cover all bases and make sure everything is A-Okay. It’s just rather scary, isn’t it? But again I don’t have to tell anyone about that here I’m sure!! 

I want to say thank you for all of the replies I’ve received here, they really helped clear my mind of scary thoughts a bit and I now feel in a better place ready to face whatever may be coming our way next week. I’ll keep you all updated. 

Thank you for your kind words!

Hi everyone,

Just a quick update - and it's  good news! After having her PET scan a week and a bit ago my mom received a call today to say that her MDT meeting have reviewed her scans past and present and they're happy to dismiss her as there's been no changes to her lung shadowing in the last year and the PET scan didn't pick anything up. Relieved is an understatement!!! We are so elated at this news. 

I just wanted to thank you all again for your kind words, it meant a lot to me x

Hi missconfused. That is wonderful news. Thank you for taking the time to come back and tell us. We like to hear the good news stories here, they give us all a lift. 
Take care