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The Roy Castle Lung Cancer Foundation

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Newly diagnosed

Coorslight profile image
9 Replies

Hi new to site , my husband has just been diagnosed with non operable central chest lung cancer T4 N2M0

Please can anyone explain what this means we are still waiting for pet- scan and to meet an oncologist, just devastated and so confused.

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Coorslight
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Debs0768 profile image
Debs0768

T4 means stage 4, N2 means 2 lymph nodes are affected and M0 means no spread. The language can be so confusing. That was my diagnosis too.

Wishing you and your husband well c

Coorslight profile image
Coorslight in reply toDebs0768

Thankyou for your reply, have you started your treatment yet

Debs0768 profile image
Debs0768 in reply toCoorslight

Yes, I had two cycles of chemo but scan showed it wasn’t working. Am now on immunotherapy (Keytruda) and waiting for scan beginning of October to see if it’s working

Coorslight profile image
Coorslight in reply toDebs0768

All the best too you hope this treatment suits you xxxx

JanetteR57 profile image
JanetteR57

it can be a very bewildering time so you may find some of the information on Roy Castle lung cancer foundation website helpful as it suggests some questions you may want to ask. The staging which is what the letters and numbers represent are part of an internationally agreed system to help clinicians recognise instantly what they are dealing with. Lung cancer has many different types and many patients have very different characteristics within their tumour as well as often other conditions. This is why biopsies and bloods are done along with imaging to determine more 'targeted' treatments for the specific features a patient has which will be discussed with the oncologist. The PET scan is a more sophisticated type of scan where tumours may 'light up' in response to the contrast solution or not - to again help the oncologist determine the best way forward. We all think we know the outcome of lung cancer but unless we've been involved in recent years, things have changed beyond recognition. There have been changes and improvements to every type of treatment that used to be thrown at it - stage iv is usually considered inoperable but that doesn't mean untreatable so don't give up. I'm approaching 10 years since my first admission to hospital then subsequent diagnosis in Jan 2011 - but was eligible for surgery to remove the 7cm tumour and half left lung and back at work some months later. Since 2012 I've attended conferences and been involved in research for lung cancer since 2014 and met many patients who were told they were 'inoperable' or suggested a shorter life than expected but many did well on treatments that were the forerunners of the more sophisticated agents used today. Since then immunotherapy has also been used widely in non small cell lung cancer (which your staging suggests may be what you have) and covid 19 has changed eligibility criteria for this so other patients are now receiving this too. There is a lot of jargon and scientific terminology to get your head around and lots of outdated information on the internet so stick to trusted sites like Roy Castle as they update their information regularly by clinicians and patient review panel. good luck. this may help in the meantime. let us know how you and your husband go on...roycastle.org/about-lung-ca...

Coorslight profile image
Coorslight in reply toJanetteR57

Oh thankyou just in limbo at the moment waiting scan and then to meet his oncologist, but thankyou so much x

Coorslight profile image
Coorslight in reply toCoorslight

Update my husband has had pet scan and Mri brain and no spread he has been offered radical treatment, chemotherapy and radiotherapy at the same time we are so scared when they listed all the side effects, hearing loss numbess in fingers and toes sickness diah were just a few but the oncologist gave us a little hope aswell because it hasn’t spread . Just so frightening, sorry not sure this is the right place to update so if I’ve just put this too you sorry x

Coorslight profile image
Coorslight

Update my husband has had results from pet scan and we’ve been told it hasn’t spread anywhere else but they now want to do Mri brain , saying it’s protocol, just don’t understand why this wasn’t just requested when pet scan was requested??

Doppydan profile image
Doppydan in reply toCoorslight

Dear coorslight.i had a mri scan after a pet scan pet scan picked ahot spot on base of spine it turns out it was a injury tumor on right lung removed first scan last month showed it is clear next scan in six months. Best of luck

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