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

I don't have any experience to share with you but I do have a hand for you to hold. Wishing you all the best xxx

Sorry you are dealing with this. The wait for diagnosis is hell IME.

The PET scan itself is not a big deal. I have had a couple. You will have to starve for a period of time beforehand. At your appointment you will possibly be given a caffeine drink ( diet coke in my case) - no sugar , but the caffeine protects your heart. Then you will be injected with a slightly radioactive sugar solution and scanned. The scan itself is similar to a CT. Any cancer attracts the sugar and the radioactivity shows it up brightly on the images. It’s very good at detecting scale and spread - or lack of it if it is in fact benign.
Hope it goes well for you OP and you are clear. Look after yourself - it’s a horrible wait.

I've had 4 PET scans recently and they're much less scary than CT or MRI scans (both of which I've also had recently). Obviously that's that the scan itself is less scary. PET scans are usually cancer related so that element is clearly scarier.

If you've got any questions, I'm more than happy to answer if I can. Sending best wishes your way.

@Trulyweird1 is right, if it is bad news, then this part is the hardest. The waiting to know and waiting for treatment to start are by far and away the most unpleasant to cope with mentally. Once things start happening you've got a plan and something to focus on. Hopefully though you will get good news.

ah many thanks for your responses, it actually really helps :0)

i have to ask this quesiton, the fact that after the ct they want me to (quote) have an urgent PET, am i right in thinking that it probably is cancer and that they want to see how bad it is. Somehow, i seem to think it is i just don't yet know which 'level'...

I don't have any experience but I just want to say all the best this week. I hope it all goes well. x

I'm not 100% sure what PET scans are used for to be honest.

I was sent for my first PET scan after diagnosis (which was done following an x-ray, MRI, biopsy and CT), so it was very much to determine spread and stage before a treatment plan was decided upon.

I'm surprised that the doctor isn't telling you more - I was told following the first MRI that they were fairly certain it was cancer but needed a biopsy to confirm. It was then a good month before we had concrete answers and I was then sent for the PET.

Do you have a number for the consultant? It might worth ringing to get more information so you're not left spiralling.

I think PET scans are more sensitive than CTs so they pick up more and they give 3D images whereas PETS are 2D. I don't think it means that you definitely gave cancer. Maybe they want a better look at the three dots in a way the CT couldn't give.

I had a pet scan after being diagnosed (via an x-ray, ct scan and needle biopsy). So I knew I had lung cancer, and which type, before my scan. The scan was to see if it had spread (good news for me, it hadnt). This is all twelve years ago so my info may be outdated.

I was advised to wear warm clothes with no metal parts (it was in December, so warm wasn't a problem, but the no metal but was). I got there anas has been said, I was given an injection. I then had to wait 30 minutes. strictly no reading or music allowed, as they highlights areas off the brain that they don't want to be highlighted. So that was boring.

The scan itself was ok, much like an MRI or CT, but in my memory it felt longer. And I had to lie perfectly still with my hands stretched over my head. That was the painful thing.

I was also advised to avoid old people, young children and pregnant mothers for twelve hours afterwards.
I wish you all the luck in the world. And as someone who has gone down this path, I know how hard the waiting is. It was over three months for me from x-ray to operation. Doesn't seem so long in retrospect, at the time it felt like aeons were passing.

The radioactive substance they inject you with for a PET scan binds strongly to sugars. These are usually produced by fast replicating cells or muscles being used (which is why you need to just relax between having the injection and the scan).

It may be that they have seen something on your CT scan and they aren't sure what it is. The PET scan will tell them if it is growing quickly which can be indicative of cancer or inflammation.
My ulcerative colitis showed quite clearly on the PET scan I had when I was diagnosed with vaginal cancer and then there was a lump in my breast and armpit that also turned out to be cancer.
The PET scan was to check there wasn't anything else hiding.

My DF had suspected lung cancer. They did a PET scan before a biopsy because he had other health issues and the consultant didn’t want to give him an invasive biopsy without being clear that cancer was a strong possibility.
However, following his scan the consultant said he was as certain as could be without a biopsy that it was cancer. Dad chose not to have the biopsy or treatment and died about 6 weeks later.

thank you so much for your responses, i can't tell you how much they have helped as i feel so alone and if i mention it to anyone i get that tilted head sad look and the 'you'll be fine comment'. I had an ultrasound as the cough i had had created what i thought was a hernia. The ultrasound showed up a host of things ie kidney stone, small hernia, fatty deposits plus a small cyst on my liver (gp wasn't bothered with any of these). She was however concerned about three cysts on my kidneys. I have a separate hospital appointment for mid october for those. I was thinking, when i go for the PET this week, if i mention it, do you think they can check my kidneys at the same time!!! Makes sense to me. All of this has happened since friday. my husband has been away working and i am a busy market trader so it's been mad. Actually, i love my job so this has been a good distraction. The barts hospital dr called me when i was serving someone. i couldn't hear what she was saying, it was like something from a dark comedy sketch. If you have seen Breaking Bad it was just like the scene when walt is just diagnosed but he is more focused on the consultants yellow stain on his overcoat. Well, when i was trying to listen to what the dr was saying, i was more focused on following an old lady acound who has form for stealing from me......... ps: sorry for typos/lack of capital letters. i've just got in from working three full days starting work at 4am. thanks again

In my experience they're very zoned in to only scanning the areas they've been told to. Why don't you contact your gp or the Barts doctor and explain, and see if they'll enlarge the scan area and let the techs know before you go. It makes perfect sense in saving the nhs time and money - which is why they probably won't do it!

No advice to offer but whatever the outcome you are in good hands.

Best of luck op x

A PET scan is a whole body scan, they are quite expensive and only used when something has shown up on a CT scan.
It isn’t cost effective to only scan part of the body with it.

That's good news for the op, then, @MrsPnut . They'll automatically be scanning her kidneys as well as her lung and will pick up everything.

Happy to say I was wrong, op, and it sounds like your kidneys will be scanned after all.

I have no advice to offer, but want to wish you good luck xx

i've been on the internet as you do and it says that apparently PET aren't good for being able to clearly study cancer in kidneys but am guessing that if there is something there aside from a benign cyst it might pick it up.

OP I have stage 4 bowel cancer & I receive my treatment at Barts. I have had two PET scans now. I won’t repeat what everyone else has said about the procedure but one thing I would mention is that you have to try & stay still for a while. The first time they asked me to put my arms above my head which became quite uncomfortable after a while. The second time I asked to have my hands clasped in front which was much more comfortable.
I honestly get how surreal, scary & out of body this whole experience is. If you ever need support then do pm me.

PET will pick all of this up. Will highlight areas of high cell activity ie cells that turn over rapidly such as those which are cancer cells.

It'll pick up absolutely anything that has a cell activity above the level of your liver (which is the baseline they use. When I say anything, it really is anything. My first one picked up a tiny (smaller than a 5p) almost healed insect bite from a fortnight before the scan. I had stage 4 blood cancer which can affect your skin so my consultant hauled me back in to look at it (it was just a bite) - because it just shows activity it doesn't say what it is, so don't freak out if they have a long list of things to check.

When is your PET scan?

thanks again everyone for your responses. my scan is thursday morning. one good thing about being busy with work is that i am so exhausted i really don't have the energy to be stressed and i am getting up at 5am for work again tomorrow and should have been in bed by 9.30 which is good as it means i will be tired again tomorrow!! i love my job :0)

I'm in the same boat as you, OP - suspected lung cancer, with a PET scan this Wednesday. I am asthmatic and have been through this process twice since 2005!

The second time, seven years ago, my abnormal lung nodule lit up on the PET scan, it had grown and had blood around it, and my consultants were convinced it was malignant and wanted to proceed straight to surgery. But I insisted on a confirmatory biopsy, after which malignancy was ruled out.

So a "positive" PET scan does not necessarily mean you have cancer.

Even though I've been through this before, it's no easier to deal with mentally. I have two new abnormal nodules and something on my liver, and it's impossible not to worry. I agree with the PP who said the waiting was hell.

It's great that you love your job, OP, it will help to get you through.

liveinthewoods i had an ultrasound recently that showed up loads of stuff inc fatty deposits on my liver and a cyst, kidney stone, small hernia. It also showed up three cysts on my kidneys and now have suddenly received in the post a hospital appointment for mid october although i will mention them when i go for the pet on thursday as who knows, perhaps they can take a look then? i feel a can of worms has been opened. I am 57 so not young and expect things to start going south but that doesn't make it any easier. I have read about nodules so am really hoping that is what they are but the doctor talked alot about the op if it was cancer and i got the feeling that she thinks it is and the pet is just double checking. Anyway, best of luck to you for Wednesday. I'd appreciate it, if you wanted to, if you could come back and let me know how you got on? This all started for me back in March when a cough came along and is still here although it does feel more allergy ish/throat post nasal drip rather than a chest cough. Dr said when i asked that my lung function was normal (i also have asthma).