I am still waiting for a treatment plan over 3 months after first MRI. I have stage 4 lung Cancer with metastisis in liver and mediastinum.

[Treemoth]

I have Exocrine Pancreatic Insufficiency I had an MRI to check my pancreas. It revealed irregularities in my liver. I had a CT scan which revealed lung cancer. This was when I was told the words lung cancer. Then A PET scan showed cancer active in 3 sites including nodes in the mediastinum. I was cycling down my road got off the bike to answer the phone. I was told that it was live in 3 places that they wouldn't be. able to remove it and treatment would be systemic, chemotherapy was mentioned. I Googled. The first info I found said I had only a 19% chance of being alive in a year. another said life expectancy a median of 4 months after diagnosis, yet another mentioned 4-11months.

My GP told me that they didn't even know what type of cancer I have yet and I mustn't decide I had only a short time to live. It was very upsetting being told such a diagnosis without qualifying information. I didn't see the GP for weeks so didn't have any calming voice until then.

Then I had a brain scan, liver biopsy and Ebus broncoscopy for a biopsy of the nodes inbetween my lungs. This is still being processed over 3 months later.

Currently I am concerned about how long it is taking to make a full diagnosis. I had the initial MRI in October and have not started treatment yet and we are in February.

I would like to hear what anyone thinks of this or if anyone else is still waiting for a treatment plan.

[JanetteR57]

What an experience you've had to date without answers or with suggestions without evidence.... such a lot to deal with. Lung cancer knowledge and treatments have changed such a lot in recent years and even with advanced disease it's important to have answers to a number of questions to determine the most appropriate course of treatment. Biopsies are preferred to obtain the histo-pathology of any tumour as there are several 'targetable' mutations but giving the incorrect treatment can be harmful.... Google really isn't accurate for all the many changes in lung cancer treatments as many studies/charities don't pay or have optimum search engine triggers for their results to come higher up so unless you trawl through the pages it's unlikely you'd find the latest situation. Trusted sites such as Roy Castle lung cancer have good patient information in plain English to help people navigate the situation. It sounds as if until they have all the results to determine where your primary cancer is accounts for the delay until now - as the pandemic has impacted staff/lab capacity in many places but it was always quite a drawn out process.... if the lung cancer is a secondary to another primary, then the treatment may differ so they'll wait for the results of the liver biopsy as well as the scans you've had to consider in a multidisciplinary team meeting. Until the specific type of lung cancer is identified, drawing any conclusions from averaged 'all comer' bucket scores of lung or any other cancer survival statistics (likely to be out of date as well) is pointless and will only be frightening. I remember when I was diagnosed and treated the survival stats were that only 29% survived 1 year and 9% 5 years - that was in 2011! My treatment was delayed by months and a 7cm tumour removed. The lung cancer landscape bears no resemblance now as every treatment mode has changed and many are living years with lung cancer even at advanced stage on new and combination treatments. GPs are not cancer specialists which is why we're referred to specialists and in your case it sounds as if there may be several disciplines involved so hang on in there. Your GP is correct - you're currently under investigation - until determined otherwise they're investigating you for cancer so looking for more specific answers without results online is likely to increase your fear unnecessarily. Do give the hospital a call - there should be telephone numbers on the letters you received with secretaries' numbers and tell them your situation, explain your anxiety and ask what's happening. good luck. roycastle.org/about-lung-ca...

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Treemoth,

Sounds like you have had a lot going on over the last couple of months. There are NHS guidelines and once cancer is suspected and the referral has been made you should have a confirmed diagnosis and treatment plan within 62 days. Within each region of the UK the target times are different there is good information on this on Cancer Research UK, I have added the link below

cancerresearchuk.org/about-...

Biopsy results will normally take a couple of weeks and after 3 months you should have had some contact regarding this, get in touch with the team who’s care you are under and ask for an appointment to discuss your scans, biopsy results and going forward a treatment plan. Do you have a cancer nurse specialist? If you do get in touch with her as she works closely with the team whose care you are under and will be able to access your health records and provide you with information.

Your Gp will also be able to give you some advice and can give you the details of who the best person to contact would be.

I would defiantly avoid Dr google as often the information you find is inaccurate, out of date and not relevant to you situation, I would stick to sites based in the UK such as our own, MacMillan or CRUK, links to these added below.

roycastle.org/

macmillan.org.uk/

cancerresearchuk.org/

If you would like to discuss anything you can either email us 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

[Hidden]

Hello TreemothFirstly I find it disgraceful that you were told over the phone.

I have Stage 4 NSCLC, I'm 66. Found my accident really, went to GP in early June with my IBS getting worse. Sent for Endoscopy and because symptoms continued a CT scan, which picked up the top of upper left lung, everything moved quickly, within 2 weeks referred to local hospital, PET scan, biopsy, and Salford Royal for REBUS, referred then straight to Christie in Manchester.

It's in my lymph nodes and unfortunately a very tiny area of my brain, this devastated me, but told only very tiny and in an area away from the working part??

I'm now on my 5th immunotherapy session and waiting for full CT scan to know whether it's shrunk or amazingly gone, I doubt it, but I'm always negative.

I know it's hard but try an stay positive (something I find hard) and please don't Google, most is out of date. I was obsessed with googling but no more.

I'm pretty certain you will know more soon. In the meantime stay strong, there's some amazing success stories on here.

Best wishes

Pam

[Hidden]

What Jeanette says is good positive advice.