The Journey Begins 7th August 2023

[Beatthisthing2023]

Nasty cough with shortness of breath , Local GP suspected chest infection, prescribed antibiotics and chest x ray, this picked up a issue so had chest CT scan.

12th August. Suspected lung cancer to right upper lobe .!! Early staging suggests T3/N2/M0 this now May have been a bit premature as Bronchoscopy bio markers test

Could not be completed due to lack of testable samples. Now waiting on test results from EBUS ultrasound scan Bronchoscopy,

As it is now believed to be a Lymph node issue

I have been assured that it is only in one area of my lung and has not spread to other parts of my body so I thankful for that

With a date set for MDT meeting 11 th October.

I would just like to to put the list of testing that I’ve had over few weeks as I believe I have had the best possible testing to help diagnose

Exactly what I need to Beatthisthing.

X-ray

Chest ct scan

Head ct scan

Head MRI scan ( noisy machine)

Lung breathing capacity test

Bronchoscopy

Chest Pet scan

EBUS ultrasound bronchoscopy…..

It’s the waiting for results which is the the downside but once I find out what needs to be done treatment wise I can get on with beating this thing .

Feeling positive really does help and support from my family is so important so anyone reading this who is struggling alone please talk to family or someone who knows what there talking about as Google will not help one bit…

Thanks for taking time to read my journey so far and I’ll update after the MDT meeting…

Let’s. Beatthisthing

[Cockailschemocancer]

You’ve got this!!! Once you have the plan you’ll be on it!

[Beatthisthing2023 in reply to Cockailschemocancer]

Yeah

Thanks for the reply

Like everyone the waiting for test results is the thing that doesn’t help

But staying positive and knowing I’m gonna fight what ever results come my way is the the only thing I’m thinking about

[Eglingham]

Hi,The waiting is agonising but the positive mental attitude is everything, omce you have the plan you will steam ahead and kick it's ass! You've got this 💪

[JanetteR57]

Yes, it's a complex pathway to find out what it is as symptoms overlap with many other conditions and is one of the reasons that many people are detected late for several conditions. As you've found, not only the tests but the results all take time and often only lead onto another tests. With many other conditions, a simple blood test or image puts people into a pathway or out of their misery but sadly not the case with this as you've found.

The good news is that whatever it is there are treatments. Mine showed clearly on chest x-ray when I went to A&E mid October, then took over a month to get a CT where it showed even more clearly, then sent for a PET scan then an appointment made to see a consultant. that was brought forward when the PET results came in and he explained that whatever it was, they weren't going to waste time with a biopsy as it and half my left lung had to be removed. I was just 52 at the time. He thought it had been detected the month before rather than 2 months before! Anyway, had surgery December and diagnosis January - that was in January 2011 and I was back at work and swimming by end of March. My surgery was open whereas now most are keyhole so quicker recovery.

As you say Google is dreadful - at the time sites like this didn't exist nor patient support groups as they are now nor social media..... and feared the worst. If you want to find out updated reliable and trusted information, recommend Roy Castle lung cancer foundation website that has information on all the different types of tests, facing a diagnosis as well as treatment information and 'living with' aspects if it is confirmed.

Good luck - getting on with life in the meantime and keeping active/well enough to fight whatever it is are good recommendations... onwards and upwards... roycastle.org/about-lung-ca...

[caz0021967]

glad to hear you,ve done well . Had surgery feb 2022 and was diagnosed with non small cell cancer . Surgery removed without further treatment so i was very lucky . Wish they would find a cure for this awful disease

[caz0021967]

the waiting is the worst , once you know what your dealing with its easier . Wishing you all the best

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Beatthisthing,

Welcome to the forum. So sorry to hear about your cancer, this must be a very difficult and worrying time for you. I see you have already had some support and good advice.

Our information booklets might be helpful and can be found on this link: roycastle.org/help-and-supp...

These range from diagnosis, staging of lung cancer, treatments and living with lung cancer.

This link takes you to the new diagnosis information P48 has suggestions on what to ask your medical team. ManagingYourLCDiagnosis_2019Booklet.indd (roycastle.org)

If you are looking anything up online, we would advise that you keep to the following websites, that provide accurate and up to date information:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

There is a lung cancer pathway from NICE (The National Institute for Health and Care Excellence), where it is presented as a flow chart and you can look up the type of cancer and see the recommended treatment options. When you click on the link, click on the icon that looks like a mobile phone and this open up to another page with the flow chart: nice.org.uk/guidance/condit...

Always remember, support is available. There is an online forum where you can find support and encouragement from those living with lung cancer: healthunclocked.com/lungcancer

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp... Or by emailing [e-mail]

I hope some of this is helpful, but if there is anything else you would like to discuss 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.

Wishing you all the best

Kind Regards

Roy Castle Support Team