Stage 4 lung cancer and secondary bon... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Stage 4 lung cancer and secondary bone cancer

Antrobus2021 profile image

Hi, I am new here.

Three weeks ago I fractured my femur for no apparent reason, no fall etc. During subsequent scans and xray a mass was found in my lung plus secondary bone cancer. I have a PET scan early November to see if both cancers related and how many of my bones affected.

My question is has anyone experienced this, what is prognosis (on average) and what treatment or just palliative?

A month ago I thought I was in perfect health.

26 Replies

Hi Antrobus and welcome, this is a great site for looking for info and the experience and advice from others. I’m sorry for you and I know how you must be feeling right now. Mine was like yours, spotted in my lung by accident when having a CT scan for bowel, which was normal. I had no symptoms of lung cancer. Then it was like a rollercoaster, more scans, PET scan, brain scan, the list goes on. That was back in August. I fractured many bones in the past due to a cycle accident in 2014 but also have osteoporosis, which has caused fractured vertebrae. Well, the subsequent scans showed the cancer has spread to a fractured vertebrae. I’m at Christie’s in Manchester and had my first immunotherapy last week (Atezolizumab) My treatment is palliative as there is no cure once it’s spread, I’m stage 4 NSCLC. It’s hard to find positives on line but they are there, and immunotherapy is a breakthrough and they will put you forward for drug trials. Sending my love and best wishes. Xx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

Hi Loimie

Many thanks for your response although I am sorry to learn of the many issues you have/are experiencing but your positivity came shining through in your response.

I am at stage 4 so believe my treatment will also be pallative although I have to wait until early November for my PET scan and then subsequent meeting with my oncologist

(apparently there has to be a 6 week gap between surgery ie my fractured femur before having a PET scan).

At least I now have some idea of what lies ahead, I am taking it step by step with my focus on getting my leg fitter then will tackle the rest. I think positivity does help.

I wish you all the best. x

Loimie profile image
Loimie in reply to Antrobus2021

Hello Antro, yes wait until you have the PET scan, it may not be as bad as you think, my CT scan was suspicious of it being in my bowel too, but PET scan much more detailed and accurate, and showed its not in my bowel. I fractured my femur too in cycle accident, got a pin and plate in. Sending love and best wishes x

Hi Antrobus2021 Welcome to the forum. As Loimie says, this is a great forum for advice and the Roy Castle nurses are very helpful too.

Its good to hear that a month ago you were in perfect health - it should mean your doctors can offer you a wide range of treatments. The options for treating stage 4 lung cancer have changed hugely in the last few years. You ask about prognosis but I don't think there is a helpful answer anymore because of the advances in targeted therapies and immunos. You can look at Macmillan or Cancer Research (with hindsight, I wish I hadn't!) but their data is at least 5 years old, before these new drugs were generally in use. There are so many people now living well for many years with S4 lung cancer.

You also mention 'palliative'. I think the medics use this to mean the disease isn't curable. It doesn't mean that it isn't treatable. My husband was diagnosed with S4 non-small cell in March this year, and it was described as palliative treatment. He's had chemo and now has 2 immuno drugs (avastin and tecentriq) every 3 weeks, which have few if any side effects. He had huge tumours in his lungs and extensive mets in his bones then. Now he is in great health, looks amazing and is super fit. We know the road ahead will have its bumps but we're hoping he has many years ahead of him.

Do keep in touch and let us know how you get on.

Sarah x

Hi Sarah

Many thanks for your positive and very helpful response.

I think not having a proper diagnosis and initially being told rather bluntly by the orthopaedic consultant (who incidentally did a great repair job on my leg) that I had a lesion in my lung came as a great shock. As did having the MacMillan nurse at my meeting for the results of my bronchoscopy and then being called by a nurse at my local hospice about benefits etc, made me think that palliative care was short term, I am pleased and reassured to find that this is not the case at all.

Reading about the improvements in your husband was also very uplifting and good to hear that not all treatments lead to bad side effects. I am also sure that having a positive state of mind helps too.

I will continue to keep in touch and let you know once I speak with my oncologist and in the meantime wish both you and your husband continued good progress.

Kind regards

Rob

@

And I’m now almost three years into my ‘palliative’ care, living a full active normal life with incurable stage 4 lung cancer and bone mets. So normal that I’ve kept my cancer secret from everyone but a handful of people (slightly odd I know, but I decided that while cancer might be in my body I didn’t want it in my conversations.)

The medics are now talking about a ‘functional cure’ in my case - whatever that might mean. (Would be very appreciative actually if the Roy Castle nurses could explain it to me.)

The thing that always gave me hope when I started treatment was the number of cancer patients on my ward who were totally broke. People who’d blown all their life savings on their ‘last Christmas’ or their ‘holiday of a lifetime’ but were still going strong many many years later.

I’m sorry you’ve had to join this site in the first place but I hope to see you on it for many years to come.

Wishing you all the best.

Hi Ellyjayb

What a pleasure to read your story. I think we all deal with things differently, some more positively than maybe others.

I think you make a good point that whilst you acknowledge you have cancer you do not want it in your conversations. I know that if made known to some people they do not know how to react or what to say and it can make conversation difficult.

You are an inspiration and I wish you many many more years of living a full , normal and active life. Thank you for your kind comments too.

Rob

Hoping you’ll join the ‘we’re still here’ club. There are loads of us.

I have every intention of doing so.

sassassas profile image
sassassas in reply to Ellejayb

I love your story Ellejayb - especially meeting patients who were totally broke! Keep sharing your story please.Sarah x

Loimie profile image
Loimie in reply to sassassas

Your story is so uplifting Sarah and I think we all need that on this forum. It’s early days for me just one session on immunotherapy. I really hope and pray that I will feel better after my next immunotherapy. I send my love to you and your husband. Pam

I broke my hip last Nov, no fall just snapped. Had PET, CT and Bone scan. Primary lung tumour 2 nodules in other long and cancer in sternum and hip. Prognosis is palliative care. 10 months on i've had radiotherapy on my hip. 4 rounds of chemo and i'm on immunotherapy and premetrexed. Cancer shrunk in first 6 month and now remains stable. I'm living life as fully as I can round treatment and look after my grand daughter. I've read good stories on several web sites from people with the same diagnoses. So just loving life and enjoying what i'm doing

Hi Gentlelady

Well you have certainly been through it but pleased to learn that the treatment you are on has shrunk the cancer and now remains stable. I agree that there are a number of positive stories on this forum and from reading your response that you also have a positive attitude which i believe can make a big difference.

Also pleased to hear you are loving life and looking after your granddaughter and hope it continues for a long time to come.

Regards

Rob

Loimie profile image
Loimie in reply to Gentlelady

Your story gives me such hope. I too look after my granddaughter, and until I read your post I was thinking I won’t be able to do that anymore. It’s early days for me, first round of immunotherapy last week, feel pretty tired and weak, trouble walking now as it’s gone in my pelvis. I love cycling, so hopefully I’ll love life once again. It’s the emotional side of things I can’t get my head round. Sending love.

Gentlelady profile image
Gentlelady in reply to Loimie

I' m tired for the first week but seem to bounce back in weeks 2 and 3 (3 week cycle). I ask for help during the first week so i'm not on my own so my mum and mother in law stay to help me. Buy after that I get out to mums n toddler groups etc. I also sleep when my grand daughter sleeps when helps. X

Yes like sassa says, palliative care means it’s treatable. When my consultant used that word, she said don’t misunderstand the word palliative, I think she saw the look on my face! I thought palliative was like end of life! It’s very treatable like sassa says with all these new drugs and drug trials, and treatment is personalised, that’s why they take so much blood to see which drug is right for you, and of course they will put you forward for drug trials. There’s other amazing drugs they are coming up with all the time. Mine is only two year since it was licensed, so who knows what’s round the corner. Sending love and best wishes.

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

Hi Loimie

Thanks for the reassuring advice, and I too misunderstood the term 'palliative'. This forum is an excellent way of gaining a better insight and information and also lovely people.

Wishing you the very best

Rob

Loimie profile image
Loimie in reply to Antrobus2021

Yes it’s a great sit Rob, somewhere to to turn to. You’re at Christie’s aren’t you Rob, they have Maggie’s and a WhatsApp group. I don’t often get involved but they have lots of useful information. You will be ok Rob, we’re all with you! Xx

It's all a shock especially when not being investigated for it and with no symptoms - but as others have posted there are treatments and outcome nothing like what is often found if you use 'Dr Google' which has no filter for outdated and inaccurate information.... my diagnosis in Jan 2011 after surgery to remove half my left lung and 7cm tumour after turning up in A&E. in the October and misdiagnosed as uncontrolled asthma was a similar roller coaster. I've been involved with lung cancer research since late 2013 and treatments and clinical trials have discovered so much and introduced new treatments globally... use of terminal but treatable or palliative can often result in patients thinking the end is imminent but I've worked with and met patients in research who were 20+ years out from diagnosis even before newer targeted therapies or immunotherapy were on the scene which have improved things... Roy Castle lung cancer foundation has plain English information reviewed by patient panel, regularly updated which may help you...good luck. roycastle.org/about-lung-ca...

Hi Janette

Thank you for sharing your diagnosis, treatment and journey. You are very inspirational. I think with me as nothing is happening at present as I have to wait another 3 weeks before my PET scan then wait for results and oncologist meeting, I worry when I feel an ache or pain, or coughing gets worse that my health will go downhill before any treatment plan comes into force.

I am sure I am not alone in this but it is reassuring to read yours and other people’s positive outlooks on this forum.

Rob

Loimie profile image
Loimie in reply to JanetteR57

Can I ask Janette, had yours spread from the lung like mine and Rob’s has? Mine has spread to lymph nodes in chest, small area of pelvis and top vertebrae. I’ve read that if it’s contained in lung then it can be cured. Mine can’t so like Rob it’s palliative care. I’d love to still be here, like you in 10 years time but it’s very unlikely because it’s spread. Sending best wishes.

JanetteR57 profile image
JanetteR57 in reply to Loimie

Mine was contained within the lung but never give up - I became involved in lung cancer research in 2013 and met other patients involved in research many had been told 'terminal' and some lived up to 5 years on newer treatments but others lived longer than that - one of them had radiotherapy/chemotherapy and died in December 24 years post diagnosis not from his cancer but some other cause. I met several who were 10, 15 yrs out at the start - and many had cancer that had spread and combination treatments or trials helped them... there are patients on US patient sites who are stage iv who are more than 10 years out and each conference shows trial results with longer survival years than imagined even a few years ago.... treatable not curable and palliative diagnoses are the majority in the UK but there are some long term survivors in these categories... having said that, there are some resected patients (as the former minister James Brokenshire) who were resected and considered 'cured' where it recurred so treatment may be given with curative intent but not always possible to tell who will respond to treatments.... or in whom it might recur... just live your best life whilst you can - having lost my younger sister 20 years ago and then her daughter 2 years ago (not from cancer) showed me that none of us know how long we might live for but living it as well as we can in different circumstances should be our aim... good luck and best wishes....

RoyCastleHelpline profile image
RoyCastleHelplineAdministrator

Dear Rob

Welcome to the forum where you can see you have plenty support and encouragement from the wonderful responses you have had.

Sorry to hear of your shock diagnosis and it may take awhile to get to grips with it all. It is not uncommon to have a mixture or emotions that can come on suddenly and intense but do pass.

Palliative can mean any illness that is life limiting but does not always exclude an option for treatment. There are many people with stage 4 lung cancer, whom with new treatments such as immunotherapies and targeted therapies are able to have a good quality and extension of life.

Lung cancer treatments have improved in the past ten years with these new treatment although more research is needed. It is encouraging that you have been feeling well.

JanetteR57 has already provided you the link for our information booklets, which range from diagnosis, living with lung cancer, cancer that has spread and all the different treatments available. Please look at these and contact us if you have any questions.

There are a range of inspiring accounts from those who have experienced lung cancer, and can be found on this link: roycastle.org/campaigns/lik...

We have online support groups through zoom and if you would like to be part of this you can register through this link: roycastle.org/help-and-supp...

If there is anything you would like to discuss you can either email us at lungcancerhelp@roycastle.org 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

Many thanks for the useful and reassuring information. I was given a copy of the Lung Cancer answering your questions by the McMillan nurse following the results of my broncoscopy. I find the forum very supportive and uplifting to learn of other people’s treatments.

Hi Antrobus 2021I was diagnosed stage 4 NSCLC back in October 2019. Pet scan showed a 7cm tumour on the lung and mets to spine, hip and shoulder blade. I was told that it was not curable because of the spread but would be treatable. I was given chemo and immunotherapy and have just completed 35 rounds of treatment over the last 2 years. Fortunately I have had no side effects to the treatment, the tumour has reduced by 75% and the deposits in my bones are no longer visible in the latest CT scans (although this doesn't necessarily mean it's gone). I have continued to work since the diagnosis, I am now on 3 monthly scans and have been stable since January 2020. Immunotherapy is a game changer. We are all on this journey together, I wish you all the best.

Hi Straylian

Thank you for contacting me and with such a positive response. For new people like me it is very uplifting to hear of people who have a similar experience but are dealing and overcoming the issues and go on to lead a relatively normal life.

I wish you all the best for the future and thank you again for sharing your experience.

Rob

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