to be really scared of PET scan (suspected lung cancer) this week

[kelwaypops]

all started with a four month cough, xray then ct scan which i had hoped would show that the '3 small white spots' in my lungs were benign however got a call when i was working from hospital dr telling me i had an urgent PET scan which says to me at a guess they think it is but are double checking plus how bad or not the cancer is (if it is). I've not had a pet scan before and am really nervous as i think it is worse than the ct although i may be wrong. perhaps this is more of a hand hold (i've never asked for one on here before...) or to hear from someone else that may have had a health scare and can share the odd experience. thanks

Hi Kelwaypops, I will for certain come back and let you know how I got on. I am 56, almost 57, so the same age as you, and I'm in London also. I note that you have a doctor to speak to, I don't!

I've been put on a pathway that cuts out a "middle man" - I have been told - but I sure would like to speak to a "middle man" to discuss things with. Perhaps that is a luxury in today's NHS.

Your doctor may be convinced you have cancer but they can't be sure until they are looking at the actual cancer cells under the microscope, or whatever it is that confirms cancer - ie, they can't be certain based on CTs and PETs alone.

I too feel alone and understand how you feel. I found a lung cancer support group on Facebook, which has lots of positive cancer stories. I haven't joined yet (God willing) but I found it very helpful to read about others' experiences, and learn that people are living longer with lung cancer.

Feel free to PM me.

Hey liveinthewoods I don't have a Dr! At least I'm not directly in contact with anyone at barts. I had my ct at whipps Cross East London. I got a random call out of the blue when I was trading at Portobello on Friday from a barts Dr. I have no name, no letter nothing so I can't make contact to ask any questions. I need to go stock buying but am aware worst case scenario they may take one look at my insides and whisk me in! So it feels like my life is on hold one long deep breathe. Hope things go well for you tomorrow. Take care

wishing you all the best. 💐

Thanks Bee, I think it's some new procedure they have introduced, perhaps to speed things up. However, I would have appreciated a discussion with the Dr rather than just being rung up by appointment-booking staff and given dates to attend scans.

I know exactly how you feel about life being on hold. I am due to go away on holiday with a friend in 9 days' time and have no idea whether or not I should cancel it or put off a further appointment / diagnostic test and still go.

Wishing you all the best xx

PET and CT are similar but have their own sensitivities.

CT is generally good at seeing something that is there. So for example, CT us fantastic for looking at fracture in great deal, kidney stones, solid tumours, strokes..I could go on

PET can also see these things, but they can see the activity behind it if that makes sense. An uptake of cellular activity.
Which again can be many things.

PET is also very good for looking at lymph activity and is often used in blood cancers. I'm not suggesting that's what they're looking for but it is an area PET is especially good.

Basically
The xray
The CT
And PET will be used together to come to a confident diagnosis.

Hi katesbushh, thanks for the detailed info about the scans. However, they can give 'false' positives. Seven years ago lung doctors were convinced I had a malignant nodule based on a CT followed by a PET scan. I didn't, as it turned out.

Sorry about your situation OP.

I work in Radiotherapy so we use PET scans alot for information. Katebushh explains really well about PET and it's uses. Basically shows activity (this can also be things like wear and tear in joint areas) so they are looking for activity in areas they wouldnt normally expect or overly increased activity. I.e they want to see if the nodules indicate activity which would be suspicious. You will usually have a PET done alongside a CT to make the PET readable other than that it's just outlines and splodges.

The pathway in some areas in the country has changed now for any suspicious lung lesions to speed up diagnosis time. So before you maybe would have had a biopsy first but now following the new route you can have the PET first. As others have said a positive PET is not definitive but together with your other scans and examinations will help them come to understand better. It is likely if the PET indicated they would then either perform a biopsy or they may decide to use this scan as a baseline and perform another scan later on to assess any change.

I hope for the best outcome for you OP

Thank you all ever so much for your really supportive and informative messages x

I'm a bit concerned though as I have a cough (which is what started this whole process) and won't be able to not cough for long periods try as I will

liveinthewoods only just noticed your comment about whether or not you should go away. I totally get it. My partner and I want to go away somewhere in the uk for a few days as our previous trip was cancelled a few months ago as I got covid. I can't give you advise as I'm in the exact same position!😅 I've decided if I trade this Friday and my phone rings I won't answer it. I have a gp appointment at 5pm so have to leave the market early. Whatever they were going to tell me I am sure the gp will know. Hope it went OK today. All the best x

Good luck for tomorrow. I'll be thinking of you. 🤞

Good luck!

You did amazingly well user147. Bravo.

Hi OP, I had my PET scan today and the procedure went smoothly. They ask you lots of questions about your medical history and any medication you're on. They put a canula in your arm and inject you with a substance that feels cool but is OK (it's better explained by PPs).

Then I had to wait for an hour in a cubicle for this substance to take effect. This bit is very boring so take a book or a crossword or something.

Then I went in for the scan and had to lie completely still on the scanner with my arms above my head for 25 minutes. It was freezing, and boring, but not too uncomfortable, I didn't think. I had a long sleeve t-shirt on and was so cold!

I tried not to fall asleep because I move around a lot when I'm asleep and you can't move. Afterwards I was sent home. I was in there 2 hours in total, at St Thomas's in London.

There were others in the cubicles waiting too, so it is quite busy. Good luck for tomorrow OP, hope it goes smoothly for you. Take care x

Hey liveinthewoods I'm sat at Barts pet dept now having just had it. Glad yours went well too. It was freezing but I had two jumpers with me. Now the wait. I've told my husband that if my phone goes when I am working tomorrow at my market I'm not answering it. I have a 5pm gp appointment and will wait until then. I mentioned my kidney cysts, I think they were going to check them too although I did ask and he told me they check the whole area above your legs Inc your head! Best of luck to us both x

Hi beethecrackon24995 - I'm glad you've had your scan and it went well. So you went well prepared with 2 jumpers, but were still cold - but I am not all that surprised - I think it's worse when you can't move because the coldness really sets in.

But at least you are done now. I was told the results would not be available for 48 hours and that I would either hear back late tomorrow or, more likely, Monday, so it will be Monday for you too I should imagine. So you can relax - you are unlikely to hear from them tomorrow and can enjoy your weekend, hopefully!😎

I've decided to go on my trip to Scotland, which was booked months ago. The lung nurse gave me a heads up that if I need a biopsy the earliest would happen is the day after I get back, so I'm going to go there, have fun and try and forget about the C word for a few days! Good luck with your doctor's appointment.

Have a lovely time in Scotland. I'm off to hear my dd sing in Canterbury cathedral today so that should lift my spirits. All the best xx

liveinthewoods I forgot to add your user name to the post I just sent

Don't worry beethecrackon - I am following the thread so I see your posts. Canterbury is a lovely city, I hope you enjoy your day at the cathedral, listening to your DD sing. How lovely!

Well done both of you. Glad you've both got plans to take your mind off the waiting. Have a lovely weekend each.

Thanks @MarshaMelrose

marshamelrose thank you

It's 2 weeks today since my pet scan. I haven't heard back yet but don't take that as a positive. Perhaps it takes longer because I'm assuming they were checking both my lungs and kidneys. Tbh it's a living nightmare. I can't make plans although I try to as I genuinely don't know if my life is going to suddenly become a world of procedures and appointments. Only good thing is I've lost a lot of weight which in itself may actually be a negative thing which is funny as I now worry when I weigh myself incase I have LOST weight 😅

Waiting really is the worst, isn't it? Trying to live your life but having it hanging over your head. It's inevitable you'll feel hesitant over making any decisions. I'm sure it won't be too long, though.

I remember trying to lose weight and I lost a load. It just dropped off. And I then got worried that I must be ill for it come off so quickly and easily. So I thought I'd better see if my body was able to extract enough nutrients from my food so I could gain weight. 🤦 I ended up putting all the weight back on plus more! Doh. Anyway I hope it's just work that's causing yours.

Let us know when you hear something. We're all rooting for you. x