Worried about PET scan results - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Worried about PET scan results

Bunny12345678 profile image

I had a PET scan about three weeks ago as I have three nodules on my right lung, they were all 6mm but one has grown by 1mm, therefore I had to have a PET scan. My Consultant wants to see me next Thursday. I'm absolutely terrified of what he's going to say he's found and the diagnosis, it's taking over my daily thoughts, I'm a nurse too and I'm usually the one reassuring my patients, I keep over-thinking everything, needless to say I'm frightened to high heavens. Has anyone been in my position or has any advice please, it'll be greatly appreciated?

9 Replies

Easier said that done, but whatever he says you’ve had the worst news, you have cancer the word we all dread. If it’s gone further or worse they will come up with a treatment plan to help you. Also if you feel

completely overwhelmed ask your GP to give you something for the anxiety. Best of luck for your results. Scanxiety is the worst! xx

The wait is awful, once you have a diagnosis you know what you have to face, and you will. I followed the cancer prefab exercise regime and found it helped. Anything like that would do.

Good luck

Shirlbird profile image
Shirlbird in reply to Seysue

What is the cancer prefab exercise regime, Seysue?

Seysue profile image
Seysue in reply to Shirlbird

Sorry should read prehab.

Manchester has a pre surgery programme that includes a session a week with a personal trainer 6 weeks before surgery. It starts up again afterwards (without 1-1 PT) when you’re ready.

I was issued with a Myzone monitor belt that shows you how much effort you put into the exercises. What was good was the elastic skipping rope with handles (don’t use for skipping). I also use small weighs. It doesn’t matter what you do, but the Myzone programme is quite motivational as you see your effort input as you’re doing it. Getting stronger and staying fitter is so good.

Sue

Sorry to read of your high anxiety with the 'what if....' sentences that are whirring around your mind - heightened by your healthcare background no doubt. I'm unsure if you specialise in lung healthcare but if you do, you'll be aware of the many advances made in lung cancer treatment (if it turns out to be that) in recent years but if not, try not to be terrified. 6mm is still very small and many people have lung nodules in their lungs in the same way as many people have moles/freckles on their skin that turn out not to be anything sinister. Some nodules grow as a result of inflammation caused by infection and also shrink which is why there are observation protocols in place for larger lung nodules. Since starting lung health checks some years ago as pilot schemes and larger projects in Manchester, Liverpool and London so much more has been learnt about lung nodules and it's not only their size but how quickly they double in volume that are key. I've enclosed a link to Roy Castle lung cancer foundation website that explains lung nodules in lay terms (so as a nurse you may find it basic) but hope it's reassuring. At the moment, a PET scan will be used to rule things out as well as in so until the results are known, everything is in play.... so try not to make catastrophic assumptions. It is approaching 10 years since I went to A&E and a large mass was detected in my left lung - and following surgery to remove half my lung diagnosed in Jan 2011 as lung cancer (7cm tumour) but I was back at work and swimming 3 months later. In the last 5-6 years I've been involved in lung cancer research and there have been developments in every aspect of lung cancer care - if it turns out to be that. It may not.... try and steer clear of the internet - most of the data is completely out of date as most research uses specialist websites/scientific journals to publish their data and treatments like immunotherapy have changed the landscape along with targeted agents. Once you have more actual update, then you can start to ask questions but it's this no-man's land of a lot of investigations that all take time that can cause such anxiety. Try and distract yourself if you can.... wishing you well... and if you must look at websites, at least use a trusted website updated by clinicians on a regular basis such as Roy Castle. good luck.

roycastle.org/campaigns/tar...

Thankyou very much for taking the time to reply, thankyou for trying to reassure me..its comforting to hear your experience

Dear Bunny12345678

Sorry to hear of your understandable anxiety. We automatically think the worst from any scan finding or even a follow up appointment from this.

JanetterR57 has provided a very comprehensive answer and lung nodules can be something that can grow and is monitored. Either way the Consultant needs to discuss if this is the case or if there is anything that merits biopsy or treatment.

There is lots of information on our website, and one of our booklets is about the diagnostic process (please do not be put of by the title of ‘managing your lung cancer diagnosis’ as it may not be cancer you have) the booklets includes a section at the back on what questions to ask at the Consultation and you can find this from this link:

roycastle.org/app/uploads/2...

Even though your background is in nursing, when it comes to something that happens to you personally , you may find that you cannot think clearly or the same as you would do if it was a patient. Lean on strong family and friend support and even if no one is allowed in at your appointment (due to Covid-19 restrictions) let someone take you to your appointment just to be there for you whatever the news is.

It is not unusual for lung nodules to be detected on imaging and there may be a plan for yearly observation from scans.

As JanetteR57 says your lung nodules are very small in size. 7mm is 0.7 cm and if it was lung cancer, early stage 1 is 3cm or less and if caught very early surgery can be a cure.

If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

. Our helpline is open Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Thankyou very much for replying to me, you're totally right, I've lost a little perspective because its so personal, I'm so glad I've found this website for support

It is totally understandable and think we would all feel the same, feel free to contact us after you see the consultant on Thursday if you wish to discuss anything.

Take care

The Roy Castle Support Team

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