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The Roy Castle Lung Cancer Foundation
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PET scan

Hi all

Hopefully you can help. Do you know if you only get sent for a PET scan after a CT scan if your consultant thinks your cancer has spread? The CT scan shows lung cancer in one lung and lymph nodes are clear but they now want to do a PET scan. I’m scared that they are suspecting something else but not telling us. We’ve had friends at the same hospital who’ve only had a CT scan and then started treatment. If anyone has any thoughts I would be very grateful as I’m sick with worry.

Thank you.

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Hi Daisy Chain

I am a lung cancer patient, not an Oncologist, so I can only share my own experience. I was diagnosed in June 2016 with NSCLC with possible inflammation of the chest lymph nodes. The diagnosis was based on CT scan and a broncoscopy. The spread to lymph nodes suggests that the cancer had started to spread. The fact that your lymph nodes are clear sounds like a good first indication.

I also had severe lung infections (pneumonia, empyema etc) which meant that the PET scan could not be done until the infection was clear. This took a further 3 months of heavy antibiotic treatment, and the first PET scan was done in October 2016. The PET scan confirmed the tumour in the lower left lung, the chest lymph node inflammation and also identified a spread to my left adrenal gland.

I was therefore classed as stage 4 which effectively means untreatable. However, untreatable does not mean unmanageable. I had chemo through the winter of 2016-17 which shrank the lung tumour a little. I continued to have CT scans (not PET scans) every three months. The condition was always under control, not worsening (but not going away). I have been generally healthy. Through 2018 I had 25 sessions of immunotherapy which continued to keep the tumour under control. The lymph node in my chest has continued to grow, and it is that which is now causing me issues. It is has recently been treated by radiotherapy.

I estimate that I have had about 16 CT scans over the past 3 years, but I only had my second PET scan a month or so ago. It confirmed what the CT scans had always told us, but with added confirmation that the secondary cancer on the adrenal gland had disappeared.

I know I have rambled on, but the main point I would want to stress is that modern cancer diagnosis and treatment means long term management of the condition. It is not always as bad as you might first think. And I do recognise that many people are not as lucky as I have been, but many of us are lucky and learn to live with the condition.

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Hi

Thank you for your reply. I’m posting on behalf of my mum. She has also had 2 bouts of pneumonia over a 6 week period with one of the x rays picking up the mass. The CT scan suggested lung cancer and the broncoscopy confirmed it 😢 we are now worried that they are suspecting something else because of the PET scan. And we have 10 more days to wait before we get any more results. The waiting is so hard on all involved especially my mum. We’re all finding it hard to function / sleep etc with so many unknowns.

Thank you for taking the time to reply. I really appreciate it x

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Hi Daisy chain

I was diagnosed September 2012, via CT scan my tumour was confined to right lung upper lobe . I was then sent for a PET scan which I understand is routine, mainly to see if there is any spread , it was carried out prior to surgery in my case and thankfully everything was clear. I had a lobectomy Oct 2012 then some Chemotherapy and I am still cancer free today. I hope this is the case for you ,so PET scan is routine at this stage of your treatment .

Regards

Jane

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Thank you for taking the time to reply. And I hope you are right too. The waiting is very hard and allows the mind far to much thinking time. I really wish the process was a lot quicker.

Thanks for sharing your experience and I am very happy to hear that you are cancer free. Wishing you lots more good health for the future x

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I just had petscan after ct scan. Pet scan supposed to show areas where cancer has spread or not. More accurate than CT. If yours is contained only to lung good chance surgery is possible so I'm told. Also ct scan was done during petscan on mine as well.

Good luck

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I have had two Pet CT scans in last three years. It is more time consuming takes about forty minutes to prepare before scan. It's a painless procedure but gives the most accurate information for consultant. I found it very reassuring to have this done... means your consultant it being thorough.

Plenty information on the internet.

Regards

Kevin

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Hi

I was diagnosed in Mar 17 with a tumor in the left and infected lymph nodes in the right. As i was a non smoker and no underlying reasoning i should have lung cancer they belived that it was secondary source and i had a pet scan in cheltenham 2 weeks later to check the rest of the body for a primary source. Prep was usual bloods, ecg before being giving an injection of radioactive dye and waiting an hour for it to filter through the body. Then had a ct scan to take a picture of the organs before the pet scan (takes about 20mins and you have to lay soooo still) of the bone structure. Then after they lay one image over the other to see everything. Its a very simple and effective process just a bit long winded.

My consultants told me why i was having it so ask them why they think you need a pet scan. There is no reason for them to ever be secretive and it will help with your understanding and relationship with the teams.

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Hi ,I had a PET scan after a CT scan prior to surgery with curative intent .Perhaps they are going to offer you surgery if curative intent looks likely ,personally the more information they have from a different perspective prior to any treatment can only be a good thing then they know exactly what they are treating . Good luck Diane .

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Hi my mum was initially diagnosed with early stage lung cancer (from a ct scan) and was given a pet scan prior to surgery just to be sure that it had not spread elsewhere.

The PET scan shows up even the tiniest cancer cells so It’s good that they are being thorough!

Best wishes to you and your mum xx

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Daisychain it is only to make sure there aren't anymore organs with Cancer. It gives a better picture than a CT scan. Stop worrying it will come together in time. Have they done a biopsy?

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Hi

Thank you for your reply. And yes they have done a biopsy. They diagnosed non small cell in the left lung. We’re awaiting the marker results and have the PET this week. X

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Daisy Thank God it's Non-Small Cell. They can do a lot more with this than what my wife has. Hers is Small Cell which is aggressive. Maybe they will remove one of your moms Lung Chambers and clear it away. Everyone can live with one and a half lungs. I'm praying for her that it's only in the lung.

God Bless and Good Luck for the P.E.T. scan.

J

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Thank you everyone for your advice. I really appreciate the kindness of everyone even though you are all going through hard times too.

I just feel so scared and frightened for my mum. I love her so much. I can’t stop crying but am being positive and brave around her. Cancer is the worst 😢 and I am so sorry for everyone who is suffering x

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We all feel like this for our loved ones. Its normal. Keep strong for your moms sake!

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It can be very scary. As others have said PET is done to check out whether it has spread and also if there is to be surgery gives the surgeons a much more detailed picture of where to operate. I'm afraid you have to get used to waiting with lung cancer tests - treatment nowadays as others have said is a very different situation which is why more are surviving. Patients are subjected to all manner of tests to prove pathologically and through imaging what the clinicians are dealing with. It isn't always possible to have all the information but they try to get as much as possible before starting especially with systemic anti cancer treatments such as chemo/biological treatment or radiotherapy. Everyone's situation is different even within the same cancer types - patients can have different mutations within the tumour or in their DNA, different conditions, be on other medication and a whole lot more. The treatment is targeted to the specific characteristics and all has to be known before starting as some treatments are harmful and a waste of precious time for all concerned. As others have said, it is a longer experience - it's more than 8 years since my diagnosis and my follow up treatment was an annual CT scan so without intervention in more recent years, the waiting doesn't get any easier. There is some clearly explained information on Roy Castle website updated regularly by clinicians and reviewed by a patient panel if you want to update yourself but I would be asking the clinical team the reasons for tests if these are not explained to your mum. good luck.

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I also can only comment as a patient, I also had a PET scan following my initial CT scan plus other tests including bronchoscope and spirometer tests. My understanding it is a case of dotting the I’s and crossing the T’s and of course allowing the appropriate treatment to be devised.

Worrying times I know, try to remain up beat.

Fair Winds and Good Luck

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Thank you. I hope you are right. I am praying so hard for my mum at the moment x

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I had ct scan that showed shadow but nothing to confirm cancer. I then had pet scan not showing activity but they still thought shadow was early cancer. Then i had bronchscopy and biopsy with lung wash and still never gave an answer, they still was convinced it was early cancer. I then had one more ct scan and shadow was still there so that was it off to surgeon and within weeks in hospital lobectomy with vats. Half a lung took away. I went to see surgeons 3 weeks later and it turned out it wasnt cancer but inflammation. Apparently it would of disappeared in time but they were worried if it was very early cancer they needed to remove it . I can tell you i was relieved to get the news as i had lived under this cloud from Feb 2018 until Sept 2018 when i got results.

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Wow they were very through with you but what a relief for you that it wasn’t cancer. The waiting is very hard isn’t it x

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Dear Daisy_Chain_12345

There have been excellent responses of which there is not much to add to, the PET scan will provide a more detailed picture of what is going on, you could perhaps discuss the reason for the PET scan with the lung cancer specialist nurse.

It is very difficult waiting around for investigations and then the results, the positive being that they are certainly being very thorough to ensure the best treatment plan and outcome.

Please do not hesitate if you want to discuss anything on our Freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

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