Stage 4 - Lung Cancer - spread to Spine, Liver, Kidney

[Kyiu]

Hi - I'm new to the forum, looking to get some advice to where to start.

3 months ago, my father experienced breathing difficulties (chest pain) and also pain in his shoulder. He has been prescribed with antibiotics but it didnt help and scans showed a shadow in his lungs. Fast forward to now (feb 2022) - the shadows havent gone away, and further scans were done.

Specialist has confirmed it is likely to be cancer, from what he can see it has also spread to the bones/spine, kidney and liver. Stage 4.

Next steps are to perform a biopsy in 2 days time, and a follow up appointment (for the results) is scheduled 12 days later? is it normal to wait so long for results?

Is there anything else we can do whilst we wait? i'm worried we are losing valuable time by waiting for this result/appointment. I'm still in shock and I can't help but wonder that my father can be gone in a blink of an eye....

[Ceibach]

Oh goodness the wait is awful isn't it?.... There are some really good booklets from roy castle site...... Once test results come back your oncologist will have a plan. In the meantime please don't Google... This was the best bit of advise... Just use macmillan lung cancer and def this site. There are so many uplifting stories.... As a couple we are still reeling from the shock of being told husband was stage 4..... I am now forever making wholesome soups etc to keep his strength and weight up. Am sure that once things get moving... you will feel better. Sending kindest regards

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Kyiu

Welcome to the forum and sorry it is under sad circumstances with your Father being diagnosed with cancer. This is understandably a shock for you all and you may find you have intense emotions that come and go and it can feel quite overwhelming.

It is normal to wait up to two weeks to determine if it is cancer and the type of cancer, however if they are testing for mutations/proteins within the biopsy, which they normally do, this may take an extra week.

There are new lung cancer treatments called immunotherapies and targeted therapies, and although they do not provide a cure, for many they improve symptoms and extension of life. These drugs only work on certain cell mutations/proteins that are present in the persons cancer cells.

These drugs have provided treatment for patients that have stage 4, which was not available ten years ago.

This link will take you directly to our booklet on 'Managing a lung cancer diagnosis' roycastle.org/app/uploads/2...

We have a range of booklets form diagnosis, the different treatments and living with lung cancer which can be found on this link: roycastle.org/help-and-supp...

There are many encouraging accounts from those with lung cancer which can be found on this link: roycastle.org/campaigns/lik...

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

roycastle.org

macmillan.org.uk

cancerresearchuk.org

The waiting is the worst part for all the results to come in and find out a treatment plan. Some people find it helpful to find out as much information they can about lung cancer and what may happen next, hopefully our booklets will help with this.

We have an online support group through zoom and if you are interested in registering for this, you can do so through this link: roycastle.org/help-and-supp...

If there is anything 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

Kind regards

The Roy Castle Support Team

[nlg1405]

Hi Kyiu

That time frame actually sounds quite fast, even though to you and your father it will seem like an age. My mum had a biopsy done in Dec and was told the results could take up to 8 weeks, which we were all taken aback by. It didnt take that long but we still had to wait about 4 weeks and only received part of the results back as tests were still being done. After these an "urgent MRI" was planned but that was still in 2 weeks time.

I know 2 weeks seems like forever after receiving the news you have but hopefully by then they will have a treatment plan already prepared so your Dad can start treatment straight away. Wishing you both all the best x

[Bebe55]

Hi Kyiu

This is distressing news for your Dad and your family. The waiting is the worse, but it is crucial to get a biopsy so they can treat your Dad with the correct treatment. I don't know where you live. I live in Cheshire East and my results came back within 2 weeks and treatment began. Please ring the nurse helpline at Roy Castle they are wonderful support, please don't Google it's years out of date. There is hope because there are now so many treatments available giving people quality of life for many years 🤍

[janeg4]

I found my local Maggie's centre very helpful at the start of my lung cancer journey, and during those awful waits for scan results .Best wishes

Jane

[JanetteR57]

This stage is scary as it's all so unfamiliar and our understanding of lung cancer and its treatments likely to be almost nil. The majority of UK patients are diagnosed as advanced/late stage but this doesn't mean they're not treatable even if it has spread. Lung cancer knowledge has increased significantly in recent years through research and now so much more is known about them that there are many many different types/factors that affect what might work on them. That's the reason for so many tests. it's important to have all the results as trials have shown giving patients the wrong treatment can be positively harmful. I was diagnosed in Jan 2011 - detected after turning up in A&E and had an operation to remove half my lung and the 7cm tumour and groups like this didn't exist.

I remember being frightened but wanted to get on with life.

A few months later losing a friend prompted me to start fundraising for Roy Castle and was invited to a Roy Castle event in Birmingham where I met a lung cancer patient advocate told she may have less than 6 months to live with her stage iv but managed to take part in 2 clinical trials and lived over 4.5 years on treatments that have now been overtaken with even more effective ones. Most patients are treated with combinations of therapies if the tumour has spread beyond the lung to ensure they can reach 'rogue' cells elsewhere.

As others have suggested, the time you're waiting is quite quick.

It was 3 months from me turning up in A&E to finding out what I'd had and I didn't have a biopsy - the surgeon sent samples to the lab for analysis from the operation. Fortunately mine hadn't spread but they didn't know that until the results came in so there was a lot of waiting but I found keeping busy and distracted helped me.

The pandemic has put pressure on labs for turning the samples/results around but they tend to wait until all results are in so the multidisciplinary team can discuss the best way forward .

Once you have this appointment, it will be easier to deal with the 'what is' rather than fret about the 'what if' but don't give up, there are treatments and many on here to support you and your family at this time... thinking of you... roycastle.org/about-lung-ca...