Ct pet scan

[mishamilo53]

hi everyone finally got my petscan appointment Saturday at the Christie ….. so glad things are underway at last …… any tips? Elly x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Mishamilo53

The PET scan can provide more detailed imaging and hope it has went well for you. Please do not hesitate to contact us if you would like to discuss anything, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

Kind regards

The Roy Castle Support Team

[JanetteR57]

Glad things are moving for you - when I had my PET scan, the centre explained how it would work, what time I needed to arrive, and explained the whole process - so there was about an hour for the dye/agent to go into my system whilst I was to lie still - I was offered music from their CD library but decided to read- only for the nurse to burst into the room (there were cameras) and said that wasn't allowed- no brain activity, just rest, sleep or listen to music as one of the CDs was heavy metal rock which I listened to, I struggle to think it didn't prompt brain activity! The scan was about equally as long then sat around for about 20-30 minutes recovery then drove home. our PET centre was run by a private operator and everything worked like clockwork and very smoothly and welcoming service - hope the same is true for you. good luck.

[mishamilo53 in reply to JanetteR57]

thank you Janette I thought that about reading versus music too ….🤔 Think I might find a nice meditation or something . Just glad to get off the starter line and moving towards full prognosis x

[Ianhick]

I had my PET scan just over a week ago. Not much to it. They go through normal health questions and fit a canular. Then into a quiet room, a few minutes later the radiographer injects the dye, I had two present to double check I was right patient. Then relax for an hour or so, definitely no reading. The room I was in had a CD player, so maybe worth taking one of your own in to help relax. They even said I could dose if I wanted. After the hour, they come and got me, visit loo, then to scanner. The scan took about half an hour, after which I could leave.

One thing I did do wrong, was not eat till we got home, another hour and half later. So make sure you eat ASAP afterwards. I had a slight headache, but otherwise all okay. The worst bit is not eating for 6 hours. Good luck x

[mishamilo53 in reply to Ianhick]

Thanks for your reply Ian , good luck with your results

[Ianhick in reply to mishamilo53]

Thanks. I've had my scan results, just waiting for biopsy results from EBUS. I have been referred for surgery, upper right lobectomy, subject to biopsy. To be honest my wife and I feel much better now as we've almost had the definitive diagnosis.

The consultant and lung cancer specialist nurses have been brilliant and kept us informed all the way. They got my CT scan brought forward and pushed for my PET to be done, there was a delay due to the scanner being down.

I have been referred to ENT as they saw something on my voice box, so maybe more tests, but we're not getting too worried at moment.

Stay positive and don't be afraid to speak to nurses if you're concerned.

[mishamilo53 in reply to Ianhick]

thank you Ian I haven’t got any nurse to speak with yet ? I’ve had a respiratory appmt where I was told that I had tumour and two lymph’s of concern and I would be sent for petscan and EBUS … I most worried about EBUS to be honest ..,, sounds like a good outcome if you’ve been offered surgery Ian ? X

[Ianhick in reply to mishamilo53]

Might be worth speaking to respiratory department to see if they have lung cancer specialist nurses, or contact Macmillan direct. My consultant sent me to see them immediately after him.

EBUS isn't pleasant, but the nurses and doctors know this and treat you with the utmost care. A nurse is assigned to you during the procedure and focuses on you to help your breathing and keeping you calm. You have sedation and pain relief. Afterwards you're monitored for at least an hour, with nothing to eat for another hour after that. You really feel like the only patient there.

[mishamilo53 in reply to Ianhick]

thanks Ian I must admit I’m dreading that one so I hope I’m ok with it , I will phone respiratory tomorrow , there was a macmillan in the interview , but we were given the news and sent home , no one discussed with us afterwards etc ? Everywhere is different this was Stockport

[JanetteR57 in reply to mishamilo53]

there is much confusion about the nurses in lung cancer - the macmillan nurse in the interview was more likely the clinical nurse specialist for lung cancer - sometimes they're funded by Macmillan and sometimes by Trust core funding. Many people fear that the Macmillan nurse bodes poorly for outcomes confusing them with Marie Curie nurses (end of life care). macmillan support people at all stages of their cancer experience and there is nothing to read into this if they're called Macmillan nurses or not. However clinical nurse specialists who specialise in lung cancer often called lung nurses or Lung CNS take lots of qualifications specifically about lung cancer and are often the coordinator for the patient/clinician and usually have more time to explain things to patients/relatives. lcnuk.org/

[mishamilo53 in reply to Ianhick]

thanks for your advice Ian , phoned respiratory and got my EBUS appmt and a LCSNurse

[JanetteR57 in reply to mishamilo53]

many trusts don't allocate a lung cancer nurse specialist nurse until somebody is definitively diagnosed with lung cancer as many trusts don't have enough anyway but do ask at the Trust what their policy is as they can help explain things in more detail.

[mishamilo53 in reply to JanetteR57]

thank you Janette … I’ve spoken to them and sorted it out now , got my contact name and tel etc x

[JanetteR57 in reply to mishamilo53]

sounds good. good luck.

[mishamilo53 in reply to JanetteR57]

I’ll be radio active like spider man this time tomorrow Janette x

[IanM1957]

Hi Elly,

I'm pleased that yout PET scan appointment has come so quickly and hope all goes well on the day.

As for tips - make sure you arrive in good time for the scan, one of the technicians will have to make up the correct concentration of slightly radioactive tracer based on your height/weight/BMI which will then be injected via a canula.

You'll have to spend some time sitting very still to allow the tracer to be absorbed by your body's cells.

The scan itself could take anyting from 45 minutes to one and a half hours during which time you'll have to remain very still and calm again.

Once the process is finished you will be allowed to leave - if you need the toilet before you leave there should be a special designated W.C. (because of the low level of radioactivity in your system)

All the best

Ian

[mishamilo53 in reply to IanM1957]

thanks for your reply as always Ian …