Scan, claustrophobe, any advice?

User

Posted 01 Aug 2023 at 08:13

Hello folks, I had my first talk yesterday with the oncologist after my raised PSA test.

He says they need a scan before making decisions about what happens next.

I have the scan coming up in the next few weeks and I'm severely claustrophobic. I can't use lifts, fly or travel on the tube. I'm terrified of having a panic attack and not being able to stay in the machine.

How long does it take? I should have asked when I was told about it but I seized up and couldn't think straight.

Any suggestions? Should I get valium from my doctor perhaps?

How do others deal with it?

Thanks

Dick

User

Posted 01 Aug 2023 at 10:24

You presumably had an MRI scan as part of your diagnosis? How did you get on with that?

If you are going to have external beam radiotherapy, the scanner used is a CT scan. This is a ring rather than the MRI tunnel, so it's not as claustrophobic as the MRI scanner for most people. For the treatment itself, the LINACs are even more open and just move around you rather than you going in to anything, and the rooms are large. So it may be that you already had the most claustrophobic scan you'll need and that wouldn't normally be done again, but it depends what treatment you're having.

Edited by member 01 Aug 2023 at 10:26 | Reason: Not specified

User

Posted 01 Aug 2023 at 11:07

The MRI scanners are much smaller/tighter than the CT scan. I hated the MRI - had to close my eyes and try and think happy thoughts but I had zero problem with the CT scanner as it's a larger, thinner circle. Also the MRI took about 30 minutes and the CT less than 5.

User

Posted 01 Aug 2023 at 11:37

Thanks Andy. I haven't had a diagnosis and that's point of the scan.

I had a raised PSA of 6.45 detected a couple of weeks ago (my previous score was 3.5) and I was put on a two week referral program for investigation of indications of possible cancer.

I had the initial chat with the urologist yesterday who is booking me for a mpMRI scan in the next two weeks.

The results of the scan will determine what happens next.

User

Posted 01 Aug 2023 at 11:42

Thanks Steve. Happy thoughts? I like the idea but don't think it'll work for me.

Hypnosis or valium maybe.

I'm not looking forward to it at all but I can't see any other way of doing it.

User

Posted 01 Aug 2023 at 12:15

Yes, talk to your GP about some sort of a sedative for the MRI - I know that they do use them in extreme cases. I just lay there and closed my eyes before I was rolled into the machine and tried to fall asleep. I didn't open them until it over. They do give you a panic button that is comforting - knowing you could press it even if you don't :)

User

Posted 01 Aug 2023 at 14:08

Thanks for the info Steve. I will speak to the GP if I see him before the scan.

Sleeping seems a good idea, perhaps I should stay up all night before I go.

A panic button seems eminently sensible!

The doc says you're given headphones. Can you take your own music?

User

Posted 01 Aug 2023 at 15:31

Originally Posted by: Online Community Member

The doc says you're given headphones. Can you take your own music?

In my case not - they were not music headphones, just there to deaden the noise that the MRI makes.
Going in tired might be a good idea :)

User

Posted 01 Aug 2023 at 16:00

I didn't have any concerns about an MRI scan until I got in it and thought I can't do this. That first one was in a private facility and they played music,they played a sixties track that was my all time favourite, strangely "I can't help myself". I relaxed and had numerous scans since.

My NHS MRI scans didn't have music but some CT scans did. My bone scanner was close to the nose but not enclosed. My CT scans didn't feel to enclosed.

One thing to remember is that you are not trapped in the scanner and with a bit of shuffling I could get out. Explain you concerns to the scanning staff they have seen it numerous times before.

Thanks Chris

Edited by member 01 Aug 2023 at 16:03 | Reason: Not specified

User

Posted 01 Aug 2023 at 17:32

Hi Fenderman

On an encouraging note, when you have your RT, the linac is larger diameter, your head sticks out the other end and there are overhead relaxing scenes of tropical fish swimming or apple blossom buzzing with bees. This is at Guildford by the way. Treatment only lasts 10 mins at most and is quite painless. With luck you will have pretty radiographers who will pull your pants down and jiggle you into position. The only drawback is maintaining a full bladder whilst waiting!

Good luck

Peternigel

User

Posted 01 Aug 2023 at 18:04

😞

User

Posted 01 Aug 2023 at 18:06

Thanks Peter. Such a lot to look forward to 😉

User

Posted 01 Aug 2023 at 18:40

Hi Fenderman,

I've had at least 8 prostate mpMRI scans in the last 7 or 8 years and most of them have been done with my head still out or just out of the machine (I.e. they put you in feet first).

Only the last couple have been done the other way around and although I wondered why, as it didn't bother me, I didn't ask.

My point is, they can obviously do a feet first mpMRI and so surely given your claustrophobia, if they're aware of it, they'll do it that way.

User

Posted 01 Aug 2023 at 18:49

Thanks Stan. That's useful to know. I feel like I could deal with it better if my head was outside the machine, I hope I get the choice🤞

User

Posted 01 Aug 2023 at 18:55

Might be worth speaking to the MRI department beforehand. They may be able to advise and will certainly have come across people with similar concerns. They might suggest an appropriate sedative etc. Good luck 👍

User

Posted 02 Aug 2023 at 08:19

Thanks, that's a good idea.

I've been given a date of 24th August so not long now.

User

Posted 02 Aug 2023 at 08:48

Originally Posted by: Online Community Member

valium maybe.

I knew a dentist who used valium to good effect. Please have a word to them beforehand. I don't think withholding sleep would work too well. It can cause a sort of wired, anxious state that is the last thing you need.

Jules

User

Posted 02 Aug 2023 at 09:31

Thanks Jules. Duly noted!

User

Posted 02 Aug 2023 at 21:19

I suffer from claustrophobia and have probably now had at least 6 MRI scans, one being a brain scan. My heart races and I go into a panic, hate the feeling.

However, the last two MRI scans I had a head set placed on me showing a virtual image of moving scenery. The images are repetitive but it takes your mind away from where you are if you let it! I still panic and don’t like it but the virtual head set is a game changer. Ask about it at your next scan.

Ido4

User

Posted 03 Aug 2023 at 15:25

I can understand how you must feel. Well done for getting through them.

Moving pictures? Sounds interesting.

I was given an appointment at the end of the month and thought it was for the scan but apparently it's a follow up face-to-face from my first telephone appointment. I'll discuss it with them then.

Thanks

User

Posted 03 Aug 2023 at 16:03

Hi Dick

I recently had an MRI and only went in as far as belly in the scanner whilst they scanned my prostate.

hope this helps?

User

Posted 04 Aug 2023 at 09:06

Thanks for the info Conrad. I'll ask the doctor when I see them in a couple of weeks.

User

Posted 05 Aug 2023 at 15:31

Maybe get a sleep mask? They're only a few pounds on Amazon and you won't be able to see a thing.

User

Posted 05 Aug 2023 at 17:19

Hi Fenderman, Just a line to say I have a couple of shot gun pellets in my lower lip so for the MRI scan I'm put in feet first so my head stays outside the tube, hope this helps and gives you another option

Dave

User

Posted 06 Aug 2023 at 09:17

I've got still got one somewhere I was given on a flight years ago. I'll have to dig it out.

Thanks.

User

Posted 06 Aug 2023 at 09:23

Hi Dave,

I was speaking to a friend who has PC last week and he said he'd had a number of scans and for most of them he was "feet first" with his head slightly outside the tunnel.

I've go an appointment with my doctor next week so I'll ask him.

Meanwhile, I got a text about the scan appointment which says the'd send me more details so that may be useful.

User

Posted 06 Aug 2023 at 16:49

For all the MRI scans I've had, a nurse from the scan department has phoned me up a couple of days before the scan to go through the scan checklist (metal in your body, etc), so that would perhaps be the ideal time to raise your concerns.

User

Posted 06 Aug 2023 at 17:40

Thanks, it's something I will do if they call me.

User

Posted 06 Aug 2023 at 19:36

Originally Posted by: Online Community Member

I was speaking to a friend who has PC last week and he said he'd had a number of scans and for most of them he was "feet first" with his head slightly outside the tunnel.

It's five years since my scan and it was definitely feet first, and I'm almost certain I the tunnel only came up as far as my chest. Remember they are imaging your prostate which is quite a long way from your head.

It's quite possible that some hospitals might say, oh well we've got you on the machine we may as well have a look at everything, if you have a call prior to the scan ask how far it comes up? On the day of the scan, tell the radiologist your concern and that you don't want your head in the tunnel. I think that will be no problem.

Dave

User

Posted 11 Aug 2023 at 14:26

Thanks Dave, sorry I'm a bit late with the reply.

Yes, I've got a mate with PC and he said he'd had 5 MRI scans and on only one of them he went in "head first". The others left his head pretty much outside the machine. So, fingers crossed.

I will speak to them before I go and see what they say.

Cheers

Dick

User

Posted 24 Aug 2023 at 17:01

Well, what a big baby...

I had the the MRI today and was surprised that I didn't find it claustrophobic. I was pleased I hadn't taken the valium the doc gave me.

The tunnel is bigger than I thought and although my head wasn't actually out of it, I could see the ceiling if I tilted my head back slightly (although I kept my eyes closed for most of it and almost fell asleep at one point despite the bangs and beeps).

They couldn't give me any idea of when I'd get the results. A couple of weeks perhaps?

Many thanks one and all for indulging my barely concealed panic and giving useful feedback and advice.

User

Posted 24 Aug 2023 at 20:46

Good stuff fenderman 👍 I didn't think you'd find it as bad as feared - next time you'll definitely be asleep - it has that effect on me every time!

Good luck for the results, I guess a couple of weeks could be a best case scenario. Don't panic when you get the call to see the consultant with the results - the call itself doesn't necessarily indicate either good or bad news - just an appointment to tell you what they did or didn't see on the MRI. It's easy to get ahead of yourself before you need to!

User

Posted 25 Aug 2023 at 07:59

And if you'd told me it wouldn't be that bad I wouldn't have believed you!

Thanks for the heads up on "the call" - duly noted 😀

User

Posted 25 Aug 2023 at 12:57

You will find the whole PCa process is a bit like this in many cases. You anticipate the worst and rarely does it manifest itself - I was pooping lego before my RARP but it actually turned out to be very much easier than I ever anticipated. I guess that's the wonders of being fast asleep as I am not sure I would want to actually watch them doing it LOL

User

Posted 25 Aug 2023 at 19:04

😀 thanks Steve!

User

Posted 10 Sep 2023 at 13:30

A quick reply here and I think I'll open up another thread about treatment.

The good news is that the scan showed a low probability of cancer but did confirm the enlarged prostate.

It seems like TURP or ToLEP are being offered but I'm waiting for an appointment with the consultant to discuss further. I'm going to check out the posts on the two procedures.

Thanks to all for your help and advice.

Dick

User

Posted 10 Sep 2023 at 20:44

Good news Dick - good luck with the next phase!

User

Posted 10 Sep 2023 at 21:56

Thanks Stan, much appreciated!

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