CT / PET scans question: On 2wk wait pathway for suspected lung cancer

[Liveinthewoods80]

Hi everyone.

I hope someone can shed some light.

I've had a chest CT scan, on which suspicious nodules were spotted and a suspicious / potential hemangioma on my liver. After this I had a PET scan a couple of days ago.

Now the hospital wants to do a CT scan of my liver and another CT scan of my abdomen.

Is it normal to be asked to have 3 CT scans AND a PET scan? And why do I need further CT scans after a whole-body PET scan?

I have been through this process twice before as I have dodgy lungs and am concerned about the radiation exposure. Over the past 15 years I've had at least 3 previous CTs, 3 CT-guided lung biopsies and a PET scan, but did not have cancer.

Which is great news of course, BUT I've had a lot of radiation exposure and it is cumulative - ie. it doesn't "go away". There hasn't even been a discussion about it with a doctor - I've just been told to attend these scans by phone or letter and have not even seen a doctor yet.

Anyone got any advice or experience of this please?

My husband had LC, he had CT/ PET scan to start with to check where/ if it had metastasised

I'm sorry to hear that @notapizzaeater . Did he manage to overcome his illness? I know the prognosis is not good.

Unfortunately not, his had metastasised by the time it was found (sadly nhs mis diagnosis)

I'm so sorry @notapizzaeater . That is a problem with lung cancer - the symptoms often don't show up until it is advanced, but it is terrible that he was misdiagnosed. If I do have LC then I know my prognosis won't be a good one. I don't believe I have it though as I have been through this process twice before and didn't have it, although I did have another lung disease - non-TB mycobacterium infection, for which I was treated with a cocktail of antibiotics for two years.

I’ve got lung cancer in both lungs. 2 different types and I’ve had 2 different treatments for it. It has now metastasised to my brain for which I had a craniotomy and resection in March. I’ve had 2 PET scans and probably 10 or more CT and MRI scans. I now have them every 3 months, next one due on the 13th. I know about the cumulative effects of radiation but what’s the alternative? To let the cancer spread and and run out of control?

Hi
i can’t help Re lung cancer but I had to have ct chest scan after pet scan for suspected melanoma spread in lungs-luckily ( I suppose)it was pneumonitis as a side effect of treatment I had.I have had loads of ct’s and pet scans and mri’s X-rays etc over the past 7 years so wouldn’t be concerned at all about the exposure you have had.All I know is that it is quite normal to be referred back again for ct just of the chest-belt and braces I think

fingers crossed for you

@Liveinthewoods80 fingers crossed.

My hubby's was on x rays but radiology reported them as clear by the time he had another X-ray 6 months later it had spread. I've a 'lovely' 29 page letter apologising explaining it was pure human error.

@Denny53 - gosh, I'm so sorry. And you make a very good point indeed. I guess I'm just not used to all these scans. You've been through so much.

@Mollymalone123 - thanks so much for this advice and I'm sorry for what you're going through. You and Denny have reassured me that it's OK to have more scans - as Denny says, better than allowing the cancer to get out of control.

That is bloody awful. You could have sued them? but then that wouldn't bring your DH back and money is not the most important thing in life. A 29 page letter! Unbelievable, and an insult. Did anyone ever apologise to you face to face?

I was told my x-ray in late June was clear too.

Haemangiomas, once seen on CT are usually followed up with targeted. Ultrasound scans, unless they didn’t do a contrast study on you when it was first identified and now need to add contrast to confirm it (a dye they inj during a CT scan)
The liver is generally included within an abdominal scan, it’s unusual they want two of the same area, unless one is plain and one is with contrast? Or have they accidentally sent you two different appointments.

@Poppiesway1 Thanks for this - so I shouldn't need CT of liver / haemangiomas then, but ultrasound?

The hospital rang me over the recent bank hol saying I needed an abdominal CT and giving me a date. I asked if that was necessary after a full body PET scan. They weren't sure and said they would check and get back to me.

No one did, so I assumed that idea had been scotched. Then I received two letters today, one for liver CT and Abdominal CT both at 9am next Thurs, when I am due to fly to Scotland for a week - after taking advice from a different lung nurse who said I should go ahead with my trip as she didn't think I would get a biopsy date so soon (even if I didn't go away).

V frustrating. When I rang the number on the letter it was constantly engaged. So I rang the lung nurses again and they said different departments are organising different scans for me as the departments cover different parts of the body!! Nightmare.

Sorry @Poppiesway1 - I forgot to add that they did do a contrast CT scan on me. And yes, I think they have accidentally sent me 2 appointments. Thanks for your info, as it is very useful.

Hi liveinthewoods only just seen your post from yesterday as I don't often come on the health section. Really sorry you are having all this fresh new added hassle especially as you had decided to go to Scotland. Can you still go? Was your flight late ie evening? I haven't heard back from Barts yet although my pet was the day after yours I had a 5pm gp appointment yesterday so I left the market/work early. Again, lovely Dr but he needed ME to tell him why I was there as I told him the surgery had got in touch telling me they had an appointment for me. He was looking online at the specialist notes between departments if I understood correctly discussing my case post ct, it came over to me that the main respiratory specialist thinks it is cancer but I guess it will depend on the pet. I hope you are holding up? Hopefully you'll get it all sorted and still be able to go to Scotland x

Hi @beethecrackon24995 - I have only just seen your message as I decided to "park" the situation over the weekend, I was working and had to prepare for my Scotland trip, having told my friend I am definitely going ahead with it.

Your GP scenario seems like a classic NHS cock up. A friend of mine has had no end of it. I realise it's down to lack of staff and not their fault, etc.
My friend, an NHS nurse, says a lot of these appointments are automatically generated by computers, often in different departments, hence the confusion.

Your main respiratory specialist might well be convinced, from a PET scan, that you have cancer, as my consultant was six years ago (my PET gave a false positive), but they can't be 100 per cent certain until they have a tissue sample from a biopsy. I know it's hard not to think about cancer and I struggle with it too.

Anyway, how was your day at Canterbury cathedral listening to you daughter sing? It sounds truly wonderful and I hope you both had a lovely day!
I hope work is helping you, too. As much as I moan about work, I find that having to focus on it is really helping.

Sorry @beethecrackon24995 , I forgot to answer your question - my flight is just after 2pm from heathrow and they want to scan me at 9am that morning but it "may be delayed if other medical emergencies arise". I may not even need these additional CT scans after a full body PET scan and am waiting to discuss it with the doctor the day before I fly. I could have the scan's if done on time at 9am but I would have to leave at 10am on the dot to make my flight. My friend says I shouldn't risk missing my flight and advises postponing, if indeed I need them in the first place. What a mess eh!

Fuck, sorry liveinthewoods I just typed a good long response but the phone suddenly switched and now it has disappeared and I don't have the will to type it again. I'll say this, I'm really pleased you are going off to Scotland. I hope the scans/appointments all work out.

As for me, I'm in an awful place, never been so scared. Inwardly I'm finding it hard to function and am constantly zoning out/losing things breaking things. Work has been a great distraction however I only trade Friday and Sunday so the week will be trickier. I only feel respite if I either turn my phone off or I pop out having left it at home. My main fear is that they find more than 'just' a dodgy lung nodule.

Right, moan over. I typed a lot after all.. I loved Canterbury thanks, very moving. I'm off to an antique fair tomorrow despite terrible weather forecast. I think it will be good for the soul.

Take care. Let me know how you are when you have news as i will too x

Hi @beethecrackon24995 - I know what you're going through, I really do, and the waiting is hell. Try to keep as busy as possible. I find I am much better when in company than on my own. I live on my own, though family and friends are far away but in regular touch by phone, which helps too as you can talk about their lives and woes - at least it takes your mind off your own for a bit! It also makes you realise that many people have their own struggles and may be a lot worse off in health terms, which helps to keep things in perspective. That and zoning out in front of my fave TV shows via Netflix - which amazingly does help.

My sister is a cancer survivor and recommends keeping busy and occupied too, fixing your mind on other distractions / tasks where possible. Because - I know it's a bit new agey and "positive thinking-quote", but your mind can only hold one thought at a time, so try to think about something else. I know that's easier said than done. However, I think your antiques fair trip is a great idea and will indeed be good for the soul. Try to plan something fun like this every day so you have things to look forward to.

I'm so glad that you had a lovely day with your daughter in Canterbury. One of my friends is religious and says she is praying for me every night, bless her. And told me to only think positive thoughts, like "I am a healthy person and I will recover". I am a pessimist by nature so this could be a challenge! 🙂

liveinthewoods I wanted to send you some 💐 via MN but can't remember how to do it xx

Don't worry @beethecrackon24995 - those flowers you posted are lovely!

But in response to your question, this is how you do it:
Click on the smiley face at the bottom right of your post (next to the @ sign)

then a menu comes up and at the top of that, the last symbol on the right is an m for mumsnet. click that and you'll see the flowers and other MN icons!

Hi liveinthewoods was wondering how you were and if you were having/if you had had a nice time in Scotland?

Hi @beethecrackon24995 , how are you? I've been thinking of you and hope that your results turn out well. I saw the doctor just before I went on my trip to Scotland and he said the two nodules seen on my lung had disappeared, and the one new nodule had shown up but it was tiny and not thought to be malignant (because of the speed with which it developed between the 2 scans). So they don't want to do any further tests at this stage but will scan me again in 3 months to keep an eye on things.

My trip to Scotland was great, thanks, and I am really glad that I went.
Have you had your results yet? xx

That's great news re your results. No results yet no word nothing. I'm not feeling optimistic based on everything I know but I just need to know and if its bad then I need to get the ball rolling to try and sort it but frustrating as as much as I am too scared to know I know that if its bad I need to act fast before it grows but I have no Control. I will go and talk to gp reception on Tues to see if they can speed things up as well as attempting to call barts but I don't have any specific extention numbers. I just hope I get someone nice who takes pity and tries to help as opposed to a jobsworth. Glad you enjoyed your holiday x

Hi @beethecrackon24995 - if you are on the 2wk pathway, then they should have not only been in touch by now but you should have had a further test, such as a bronchoscopy or lung biopsy, by now, if I'm not mistaken - but apologies if I have got that wrong.

Pity it is the bank holiday weekend now as you may not hear back till Tuesday. I can't believe they would keep you waiting this long if they were seriously concerned about you. perhaps you could ring the hospital today to see if anyone's about who could give you a steer on what's happening? But you may have to wait till Tuesday. In which case, I would try to put it out of your mind till then and enjoy the weekend as best you can, hun.

Thanks weather.