Biopsy results, what should I ask.

[Jessiemaie]

I had a lung resection three weeks ago. I had been under observation as part of a lung health survey and following tests I was told it was likely I had lung cancer and that this was the best way of dealing with it. The biopsy was done at the same time and I am due to see a doctor tomorrow to get the test results. What questions should I ask the doctor?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Jessiemaie

Welcome to the forum and hope you are recovering well from your lung resection.

It is understandably an anxious time for you waiting for results, if lung cancer is caught early then often surgery is the preferred treatment option to provide the best outcome.

You may find our booklet on 'Managing your lung cancer diagnosis' helpful for you, on page 48 there is a section on what questions to ask at the consultation:

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Sometimes after lung surgery, some patients may be offered chemotherapy, this is called adjuvant chemotherapy. Its purpose it to 'mop up' any potential loose cancer cells circulating and it can be a personal choice whether to have this treatment or not.

It may be helpful to take someone with you to the appointment, who can pick up on anything that is being said.

It may be that you may require no further treatment, but you will continue to be observed with scans or x-rays over the next 10 years.

The lung health survey that you had done; we would be interested to know if this is the lung health screening check that is being done in some areas in England.

You are welcome to contact us to discuss anything , you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Jessiemaie in reply to RoyCastleHelpline]

I participated in the Summit Study, UCL. They found a nodule on my left lung in 2019 and I had been having yearly CT scans since.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Jessiemaie]

Thank you Jessiemaie, this is a great study to look at detecting lung cancer early and with early intervention. Hope all goes well for you.

The Roy Castle Support Team

[JanetteR57]

hope you're recovering ok from your surgery. Was it keyhole/minimally invasive or open? Mine was open surgery as keyhole didn't exist back then for thoracic surgery as my op was in Dec 2010.

My resected lung was sent away for pathology as I hadn't had a biopsy before the op as the 'large mass' as it was visible on all images (Chest x-ray, CT and PET). Having waited months for the op, it was deemed important to remove it then find out what it was in case any further treatment might be needed.

My surgeon told me its name - and the 'family' i.e. non small cell lung cancer and then explained the specific type I had didn't benefit from 'mop up chemotherapy . My 'treatment' in future would be 'active surveillance' or 'vigilance on their part' with regular check ups and imaging (which in my case was chest x-rays but some centres follow up with CT scans). It took a while for that to sink in and that my type was rare but he said more women never smokers were developing it.

I asked if it would be put in writing and when the letter arrived, I googled the specific type I had - forums like this weren't around to ask - and was curious that specific mutations came up - EGFR and ALK. When I saw him next I asked if I had EGFR as at that time that was the only mutation for which targeted therapies existed and then only on clinical trials but was told I was negative for EGFR.

When I saw another consultant (respiratory) some months later I was more ready to ask questions and seek information. I asked him the size of the tumour as the surgeon's letter had given me some numbers and letters which didn't mean much to me so he explained them and told me the size of the tumour. He said most patients weren't interested in this information.

Treatments for lung cancer have changed a lot in those 13 years (it was January 2011 when I was given my diagnosis) and I try and work out what it is I want to know and why. For instance, before my surgery I asked how I might get fit for surgery and what I might be unable to do after surgery that I could do at the time.

After surgery I asked if there was anything I might do in my lifestyle to avoid recurrence when I knew I wasn't going to be followed up with any further treatment other than 'watch and wait'.

I would ask whether there are any services for post surgical rehabilitation or respiratory physiotherapy. It's important to keep active and redevelop the remaining part of the lung.

My surgeon told me at that first follow up appointment that I could aid my recovery by being active and that felt quite empowering to me in what had been a situation that felt beyond my control!

This surgical booklet explains some of the recovery milestones and side effects/recovery tips from patients and clinicians that may help answer some of your questions. Good luck with your continued recovery. roycastle.org/app/uploads/2...