We have just found out that dad has this mass but due to his poor general health they don’t think they can offer curative care. We are waiting on lung function, but not hopeful.
We are going for scan today to check spread. When they determined his general health was poor, they seemed to change direction and I seem to recall (very blurry) they said they wouldn’t do PETscan nor biopsy if lung function less than 20%.
Would we get these if we went privately? Would they be a good idea?
It feels like the end of the world right now. Any advice would be appreciated. This is all so new and scary for us all 🙏
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Welshraq
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Welcome to the forum and so sorry to hear of the worry with your Dad's health.
Some investigations are contraindicated if they may do more harm in the process, i.e. if the person is in poor health. Although they may have moved from curative treatment, it does not mean that they would not treat your dad. It is normal practice to assess the persons health to determine what treatment will be tolerated, with a reasonable quality of life and what will provide the best outcome.
A biopsy is the most definitive way for a diagnosis which can direct a treatment plan including new therapies such as immunotherapy and targeted therapies. However, a biopsy in itself has its own risks, and this is perhaps what they are considering with your dad's poor lung function capacity. It is good they are measuring your dad's lung function to reassess this.
You may find our booklet on 'Managing a lung cancer diagnosis' of use, not that we think your dad has lung cancer, but it details the investigations and what to expect next: roycastle.org/app/uploads/2...
You may find that if you decide to go private, the doctors will have the same precaution with your dad's COPD, and you are entitled to a second opinion on the NHS, but most doctors follow the same guidance and clinical assessment. It may be worth waiting to see what his current lung function test show.
It can be very frightening all the unknowns and please know that we are here to support you, either with information or emotional support.
This link will take you to all our information booklets, they range from diagnosis, the different treatments and for those living with lung cancer: roycastle.org/help-and-supp...
It can be tempting to look things up online, we would advise that you keep to the following websites, that provide accurate and up to date information:
You are welcome to call us on our free phone nurse led helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email ask the nurse at lungcancerhelp@roycastle.org
Sorry to read about your dad's latest situation. The majority of UK patients are detected when treatment offered is not curative but there are still many treatments so don't give up. PET scan is often given is surgery may be likely to see if it has spread and lung function is often looking at whether somebody would be fit enough for surgery... Yes, it's a scary time as our minds imagine the worse if we hear not curative - it's 12 years since I was diagnosed and I was fortunate enough to have surgery to remove half my left lung and 7cm tumour. Now most surgery is keyhole rather than open but many don't have this option - but instead are offered systemic anticancer therapies like chemotherapy, radiotherapy, targeted agents and/or immunotherapy or in many cases, combination therapies using different types.
It's natural that your recall of the appointment is blurry - once we've heard the word 'cancer' and 'not curative' our minds go wandering off on their own, not really hearing what is being said as we try to contemplate what that might mean for us or our loved ones.
There is a national optimum lung cancer pathway, NICE guidelines and it's doubtful that going private would offer anything different - especially if it's about the patient's fitness for treatments.... and the cost of treatments if you do go down that road is often tens of thousands of pounds.... learning about what it means may help and there is really good information in plain English on Roy Castle lung cancer foundation website, regularly updated but things do change all the time. I've been involved in cancer research since 2013 and the situation bears no resemblance now for lung cancer than it did back then, yet I've met and worked with several patients who did ok on treatments well before today's more precision/personalised approaches even if they had other conditions like COPD or others. .
Hope you get some answers soon - but hang on in there.... for his sake as he'll need your support whatever might be offered... good luck to you all... roycastle.org/about-lung-ca...
Thank you so much for all of this advice. It’s really encouraging to read your response which is so informative. Thank you. I am trying to keep all of our spirits up and your kind words really help with this.
thank you for your reply here. My Mum was due to have surgery, and was actually on the ward, but before she was due to go down to theatre the consultant told her the last scan done the day before meant she was no longer a good candidate, due to size and position, for surgery. Just so very shocked.
Ah, that's different. The majority of patients in the UK are ineligible for surgery as detected too late but there are many other treatments for lung cancer.
The nurse who encouraged me to get involved with cancer research was actually operated on for her lung tumour which was in too difficult place (behind the heart) for surgery but she had treatments then only available on clinical trials for her EGFR+ tumour but now those and many others are available to all if they're clinically eligible.
Being detected too late for surgery to be a treatment option is one reason the targeted lung health check programme was introduced to detect patients sooner when there are localised rather than systemic treatment options.
Don't give up - she'll likely be referred to an oncologist from the thoracic surgeon to explore other options... hopefully a treatment plan will be suggested soon. good luck.
totally understandable - mine was found on a chest x-ray in the October but delayed CT scan then PET meant I had surgery 2 months later and another month before diagnosed. I was told it would have taken a long time to reach its size 7cm.
If it's due to its location then size/growth may be less of an issue than its position.
SABR (a type of radiotherapy) may be possible and has good results for many ineligible for surgery especially if it hasn't spread beyond the lung.
There are also other treatment types including immunotherapy and targeted agents which didn't exist when I was diagnosed as well as chemotherapy and radiotherapy.
It is distressing when delays added to the mix but do hang on in there.... so long as she's alive, there is hope.
Having lost my sister at the end of August to an undiagnosed heart condition despite her raising her symptoms for over a year with her GP they were mistaken for existing conditions so never further investigated.
Sadly there were delays in the system before the pandemic but worse now. Hang on on there for both of your sakes - she'll need your support whatever might be offered. good luck.
thank you for this. very much appreciate you sharing your knowledge and experiences, and but so sorry you for your loss. Yes , delays do seem to be endemic. Thank you for giving me some hope.
none of us know that there any treatments when we first hear the word cancer but lung cancer especially has had more treatments introduced in the last few years than in the previous 35 years due to the sheer volume of studies/research/trials and treatment development of every type globally. Every type of treatment has changed - with different agents for chemotherapy, different types and frequencies of radiotherapy and completely new treatments like immunotherapy and targeted agents often used in combination with other treatments.
For much more information about the condition, treatment types and lots of detail about those different types as well as aspects like living with lung cancer, travelling with lung cancer, working with lung cancer, eating well, keeping active, financial issues etc, then the Roy Castle lung cancer foundation offers a lot of plain English easily understandable relevant information. They also offer a nurse led helpline, group online sessions, some places have in person support groups and phone support. hope you can find the help and support you need ... these are much more reliable and relevant than a lot of inaccurate stuff that comes up when you merely 'google'... if something relates to even a few years ago, it's out of date as things have moved on so much. roycastle.org/help-and-supp...
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