Hello, my dear dad had CT scan in May, took 4 weeks for the results! T4 N3 M0. We ( dad, me and brother) left a little numb after first appt with respiratory consultant, our ‘ lay person’ research meant we thought it was stage3b with regional spread but uncertain about treatment options. The consultant confirmed T4 N2…M0 but didn’t consider dad could tolerate chemo , in a nutshell- palliative care. The overriding feeling we all had was that dad was being written off…he is 89. We expressed our concerns and he said “ I’ll email Oncologist today”. Saw O on Monday and he talked about biopsy and also ‘ more sensibly’ about palliative care. Surely in any treatment decision you have to know the type of cancer in order to select the right drugs?? I then read today about liquid biopsy, that wasn’t mentioned by either consultant and we asked about treatment outside the NHS! Dad doesn’t want the invasive biopsy; we understand this cancer is inoperable , not curable and life limiting but we don’t feel that all avenues are being explored. I emailed Royal Marsden and they offer the liquid biopsy on a private basis. Has anyone here had this procedure? Sorry for long post, I’m reeling from trying to be positive to sobbing, I want to help my dad…he’s coping with the news better than us! In all other respects, he’s healthier than us, follows organic diet, never smoked, or touched alcohol and not on any meds. Thank you for reading. p. s the cancer nurses have been brilliant and caring in their manner.
Liquid biopsy: Hello, my dear dad had... - The Roy Castle Lu...
Liquid biopsy
Dear Adaughter
So sorry to hear about your dad and this is understandably distressing for you all.
A liquid biopsy is a blood test, where it looks at Circulating Tumour Cells (CTC), they are difficult and challenging to detect, e.g. 'In a millilitre of blood, there are only around 200 tumour cells compared to around five billion healthy red blood cells.' CRUK, there is ongoing research into this.
This is the link from Cancer Research UK providing information on liquid biopsies: cancerresearchuk.org/our-re...
A biopsy is the best diagnostic tool for the type and cell mutation for any cancer, where they can match potential treatments with the cancer type, e.g Immunotherapy or Targeted Therapies.
It may be worth considering a second opinion ,which from your post you are exploring, for many it is weighing up sometimes the quality versus the extension of life and it is a very personal decision. It may be that the oncologist is unable to offer treatment unless a biopsy has been done.
This is our new leaflet on Biomarker testing for treatments such as Immunotherapy and Targeted Therapies:
roycastle.org/app/uploads/2...
I have placed below links to our information booklets on both Immunotherapy and Targeted Therapies, where it details the cell mutations/proteins that these drugs work on:
roycastle.org/app/uploads/2...
roycastle.org/app/uploads/2...
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...
It sounds like you are doing everything you can for your dad and you are welcome to contact us if you would like to discuss anything further. You can 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
Thank you very much for your reply, we will look at the links provided. Everywhere I turn it seems to be negative, CyberKnife- tumour size and regional spread precludes that, then I find out about liquid biopsy and sounds promising on Royal Marsden site and now I read that the tumour cells would be challenging and difficult to detect, chemo unlikely to be tolerated etc etc, makes me wonder how anything is done in any case at all! They say cancer isn’t the death sentence it used to be, it doesn’t feel that way. I apologise for my rant and if I offend anyone, that’s not my intention, just feel everywhere we turn, it’s a brick wall. I know we all die, I just don’t want it to be soon for my dad.
My brother will tell me to pull myself together and then I’ll get back to researching and try Royal Marsden route.Thank you again for your reply, it is appreciated.
It is totally understandable how you feel, many private places offer these tests, and it is always worth asking what success rate they have and more information on what they offer and what research backs it up. It would be wonderful if there was a simple blood test to detect lung cancer cells and it is encouraging that they are continuing to research this.
It would do no harm if your dad wanted the test, chemotherapy is often offered if they are unable to do a biopsy or the person declines.
There could be potential treatment options, but for these to be effective, your dad would have to have the biopsy done as they are licensed for use for specific cell mutations.
I can appreciate your frustration and it is fine to rant, hope others get back to you with their experience.
This is our link on liquid biopsy as a potential for early diagnosis and treatment options, which requires more research: roycastle.org/research/past...
It may be helpful for you to request an appointment with the oncologist to clarify things with him, or you could ask if there are any clinical trials available that your dad would be eligible for.
We are here to support you in any way that we can.
Kindest regards
The Roy Castle Support Team
Sorry to hear about your dear dad - it's so hard watching our loved ones suffer. my dad had his 3rd primary bowel cancer in 2016 at the age of 86 and needed another operation but they didn't think his heart would withstand the procedure. He was ambulanced to the other hospital to see a cardiologist who gave medication and confirmed he thought he could tolerate it and he had the procedure, he was 93 in February. Harsh anti cancer treatments are tough at the best of times and age itself isn't always a reason for exclusion but fitness of the patient. It's good that your nurses have been very supportive.
It's tempting to google for desktop research but as somebody diagnosed in 2011 and heavily involved in lung cancer research for almost 10 years, it can be a minefield for a lay person. I don't say that to patronise anyone but things change so rapidly in the area of lung cancer and many studies that change practice exclude one group or another - whether somebody has already had one line of treatment or does/doesn't have a particular mutation/biomarker etc....Many clinicians can't keep up with the increasing number of different treatments and the changes in practice.
I'm also a never smoker - it's more common these days for non smokers yet comes as a shock as public awareness campaigns only feature smokers . My dad, like yours hadn't smoked, drank nor overweight. Recent research shows that 1 in 2 of us will develop a cancer during our lifetime yet that message hasn't reached many people unless involved in the cancer world.
Did they say palliative care or palliative treatment? Palliative care doesn't necessarily mean no treatment -many think the word means imminent death or withdrawing treatment. Palliative itself means to relief the symptoms rather than tackle the cancer.
Never give up. If a patient is in a palliative pathway, they often have access to a hospice although many hold back from using this fearing it means an imminent end yet such places offer support, pain management and often a more upbeat environment even for a respite break than most of us imagine and certainly better on many of these aspects than an hospital environment.
Many private companies and hospitals offer tests for payment. A liquid biopsy is a blood test - I guess I'd ask what having such a test might change if you decide to pursue that option. As it has spread beyond his, he would need to be a systemic anti cancer therapy - chemotherapy, radiotherapy, immunotherapy. If the oncologist doesn't think he's up to chemotherapy, what alternatives might be available? The majority of UK patients are detected when surgery is not an option. There are different treatment types within these categories and many patients receive a combination and often medication to counter side effects. A lot depends on the patient's overall fitness and any other conditions they may have.
As you've read, new techniques for less invasive diagnostic testing are being researched including blood tests and breath tests but many are not yet proven for lung cancer. Often cancer is at an advanced stage when it is shedding tissue into the blood stream so current studies are looking at different aspects - whether it could be used for earlier detection for some cancers and whether better differentiation of what is in the blood can be made for useful determination of next steps for the patient.
Hope you get some answers soon. thinking of you all.
roycastle.org/about-lung-ca...
Thank you JanetteR57 for your reply, it is much appreciated. I’m not coping well with the situation but keep researching as don’t want to leave any stone unturned. Feeling angry today; when dad spoke to the nurse today ( they phoned to find out if he wanted the EBUS, though consultant saying not sensible) he said we were trying to sort out privately for the liquid version but also opting for palliative care…. the nurse then confirmed they could do liquid biopsy!!! Nobody, nurses or consultants had mentioned that to us in the appointments and I specifically asked if there was any treatment (outside NHS). Whilst we may agree that anti cancer drugs with palliative treatment might not be well tolerated by dad, we all want to have the knowledge of what type of cancer it is, even if nothing changes with the result, we want to know exactly what the illness is, not sure why that is so difficult for the nurses to understand that! Dad said we would arrange it if NHS don’t but we’re now waiting for a callback to confirm if they can carry out the test.
I was pleased to read about your dad, that is so encouraging and wonderful for you and your family. I cling on to hope but finding it so hard.
Unless anyone tells me differently, my understanding from the nurse is that palliative care is treating the symptoms which could include radiation but not anti cancer drugs used in palliative treatment.
Dad has lost around a stone, he’s been slim and slight build all his life. Still doing all his laundry and a little gardening; going to the supermarket with me and eating out. I hope you don’t mind me asking, was weight loss also part of reason perhaps why operation wasn’t initially considered for your dad, please don’t answer if you don’t want to, it’s very personal.
I will post about liquid biopsy as develops, might help somebody here.
You're experiencing the emotional rollercoaster and frustration that many experience at the start. my dad like yours is slim built - went down to around 8 stones at the time of his last op and recently was poorly and lost half a stone he can ill afford to lose. I suspect he may have been told even aged 86 that he wouldn't withstand chemotherapy although he's never said. Dad did have his operation (he's had 3 resections for 3 different bowel cancers - the first 2 when in his late 50s but they said the last one would be considered a new primary - unrelated to the others after all that time). it was his heart that threatened them not to do more surgery as he had a stent that needed replacing - it still hasn't been replaced but he was prescribed tablets to regulate his heart... although he struggled to cope with the colostomy/stoma (now larger than the original) despite 27 years previously coping. Bowel cancer differs from lung cancer although I've also read of lung surgery (keyhole) being carried out on lung cancer patients in their 80s and 90s if clinically possible. (i.e. not spread, not close to important structures/organs or other conditions excluding them) hence saying age in itself isn't a reason.
Radiotherapy is delivered in many different ways for lung cancer now so do ask his clinician as there is a lot of confusion and misunderstanding about this. roycastle.org/about-lung-ca...
it's important that he tries to build himself up anyway - if he can, but large meals can be overwhelming so this information may help. roycastle.org/about-lung-ca...
good luck.
thank you JanetteR57 and for links.
Dad is having Liquid biopsy on Monday, I understand apparently that the test may not be conclusive but we have to try. Felt very low today, everything in life seems pointless at the moment, dad seems to be coughing more but still stoic. I asked the nurse about when palliative care starts but it all seems so vague. ..l will read the link.
You dad sounds like a fighter, maybe it’s a generational thing, stoicism and just getting on with it.
Find myself having no patience with family, cancer makes you so angry at the world but not ready to give up.
we all get days like that - patients and relatives - I got through many a dark time with the mantra that 'all things must pass' (to quote George Harrison) and 'tomorrow's another day'.
Unfortunately and sadly having lost my younger sister (40) in 2001, her eldest daughter (33) in 2019 and then my older sister (66) late last August all not from cancer and all unexpectedly rather changed my perspective on cancer. Your dad's still alive - he's still here, you still have time to say things you may want to, for him to plan things together with loved ones, and hopefully for you all to face this together and support him. Hopefully you have a chance to say and do things rather than living with regret about things left unsaid or memories not created. Do you have other family members or people you care about who can help support you both?
I agree the older generation seem to be willing to bear much more and not share it in the way many people want to but it doesn't always serve them well. It's really important to get some support for yourself if you want to be strong enough to support him too - away from the family.
I found reading books helped me - and made me determine to take it as an opportunity to do things differently - two I'd recommend are 'cancer is a word not a sentence' by Dr Rob Buckman and 'anticancer a new way of life' by Dr Servan Schreiber.
Another I'd recommend is 'what can I do to help" by Deborah Hutton - who had lung cancer and it contains a collection of practical suggestions by people who'd supported others with cancer.
Take care - it can be quite a roller coaster.
Hi JanetteR57,
Apologies, I didn’t reply earlier. Yes, I’m lucky to have a very supportive husband and close to my brother, we’re the only 2 siblings and nieces. Between us, we are doing as much research as we can, sticking to the actual medical doc’s rather than unsubstantiated claims on web search. The liquid biopsy carried our yesterday is being sent to Germany, we should have results in 2 weeks and then discuss with face to face appt with Oncologist. It is a rollercoaster, one day I feel so hopeful and positive and then next just despair. Dad helped me cook lunch today, he’s not lost his appetite which is good, I think even if he put on a little weight would boost his spirits more. People talk about making memories; you feel like when suggesting different things, that you’re running out of time where normally it would just be about arranging a day out. I’m just reading the booklet about ‘FoundationOne Liquid CDx genomic profiling test.
Thanks again for your help/ ideas.
Hi Adaughter
I'm sorry to read through all your posts. It must be extremely difficult for you all.
I'm just posting about the liquid biopsy. My husband had one back in 2021 as part of his diagnosis. At that time, there was no option for getting this done on the NHS and his was done privately - via a company in the US called Guardant Health - it is the company that is in partnership with the NHS.
You may have seen this on the Royal Marsden website (with a case study of an 86 year old woman with lung cancer) royalmarsden.nhs.uk/rm-maga...
It must be very frustrating not to have been offered this test immediately as they say all new patients with stage 3 or 4 lung cancer will be offered it royalmarsden.nhs.uk/marsden360
The results will tell you if your Dad's cancer has any mutations for which there are drugs. As I understand it and what I have read from my husband's report, it WILL be conclusive if your Dad has any of these. If not (and my husband didn't have any), it will also look for other mutations that may have a drug approved but not for lung cancer, or for mutations that are the subject of clinical trials.
You also commented about EBUS - my husband has had a couple of these and finds them relatively easy to tolerate (he's 56 and in good health). The lymph nodes were in a good position so it was easy for the consultant to sample them. Amazingly, they came back clear even though he has stage 4 cancer, with spread to bones - so its very possible to have cancer metastases and very large lymph nodes but no evidence of cancer cells in the lymphs.
Have you discussed immunotherapy with your team? My husband has high levels of PDL1, which made him a good candidate for this, and he's been on atezo (tecentriq) for 2.5 years now with the disease under control. PDL1 status can only be assessed looking at the cells under a microscope, i.e. from a biopsy, so this may not be possible with your Dad.
I hope you have some better experiences over the coming weeks.
Thank you sassassas for your reply about liquid biopsy, dads appt at 2pm today. From your experience, it sounds as though we should get some information that will help. Today, I’m feeling hopeful, as someone here said to me, it’s a rollercoaster. I’m just scared of running out of time, the not knowing how quickly the tumour is growing, the doubts that the consultants give about dads tolerance of any treatment and dad having had to decide against a ‘normal ‘ biopsy within a few days, it’s a lot to grapple with. Regarding immunotherapy, so far any thing outside of palliative care was being discouraged by the Oncologist but this liquid biopsy will give an idea which immunotherapy drugs could benefit dad. I’ve talked to dad about a second opinion via Royal Marsden ( face to face or just by viewing dads records) but he felt, as already seen respiratory and Oncologist, not worth it but I’m going to gently discuss it with him again. It was wonderful to read that your husband’s treatment has the disease under control, I hope that he continues with improving health. Just to speak with others here who know exactly what we’re all going through, that understanding helps so much, thank you….did the results of the LB come through quickly via Guardant Health?
Hi there, hope you have a good appointment today.
It did take a long time for the LB results to come through - about 10 days from memory - but that included the time to ship the blood to the US, so hopefully it'll be a least a day shorter than that. Have you seen this btw - its a sample report from Guardant to help people understand them. guardant360.lt/Guardant360_...
I also wanted to comment on the word "palliative". Because my husband was diagnosed at stage 4, his disease is not curable and any treatment that he has is described as palliative. I remember in the 1st meeting with his oncologist, he had to sign a form to agree to treatment (chemo + immuno) and the consultant had written "for palliative care", which was frankly devastating to read. It doesn't stop him from having any appropriate treatment, it simply is to differentiate it from any treatment or procedure that may be for curative intent. As well as chemo + IO, we are discussing whether a little radiation to some larger lymph nodes may be helpful in 'consolidating' the work the drugs are doing. All of these things are options for him, even though its 'palliative care'.
I hope you get some progress on the detail diagnosis soon. There are some amazing drugs now for some of these mutations which are often much kinder than chemo. We were really devastated that my husband didn't have any relevant mutations so needed to have chemo, but the chemo / IO combo has been incredibly effective (he is pretty much NED - no evidence of disease now) and the IO has very few side effects for him.
Hope that's of some help,
Sarah
Thank you so much Sarah, you made me cry, not that you’ve upset me but hearing your husbands story gave me hope, whatever the outcome with my dad, thank you for that. You explained the palliative care better than the consultant! I’m seeing dad shortly, when I rang earlier he was very upbeat, eating his organic porridge with blueberries and nuts/ seeds on the side!
I did an insane amount of crying in those first months 😀. It felt so utterly hopeless and we didn't dare imagine that he might be living so well so far in the future. I'm so glad its given you some hope. It is a nasty disease but the progress in treating lung cancers has been huge. ❤️
there's so much confusion on the various terms medics use that they assume patients must understand and 'palliative' is right up there as is 'DNAR' (only kicks in when somebody has actually died) and hospice. The majority of UK patients are currently detected at late stage and many are treatable not curable . Palliative treatment is to palliate the symptoms rather than cure the condition which if you think about is how many many conditions (diabetes, AIDS, asthma, arthritis, dementia, IBS and so many others) are treated yet we don't go into that form of panic as there is something so emotive about the word 'cancer'. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put things into context much better and stop imagining that every minute/hour/day things could be developing.
I was told my 7cm tumour was likely to have taken a long time to get to that size..
There are good explanatory booklets and online information on Roy Castle lung cancer foundation website that are regularly updated with clinical and patient input that may help too. good luck.
Hi JanetteR57,
You’re right, in our family, it feels like the elephant in the room to even say the word cancer, my dad has lived with Basal Cell Carcinoma for over 25 years and it’s always been the creams to keep it away. The difference with this lung cancer is being told months not years, his skin cancer remains partly visible now, not healing, I guess because of the lung issue. I re-read your posts, I must apologise, so much swimming around in my head, you said that you were diagnosed back in 2011 and you have been told some time for tumour growth. Thank you for your information ; yourself and others offer so much helpful and thoughtful advice on this forum. We asked about growth as dad had last scan in 2019 ( also scans in 2017 and 2018 as found spiculated nodule but seemed stable) but consultant couldn’t say. A bit of a waiting game now for liquid biopsy results. My brave dad, I want to hug him forever.
Take care,
Linda
With you there - I feel similarly about my dad - now 93 but who we didn't think would get to 60 having had 2 bowel cancers and 2 resections in his late 50s. he had another primary bowel cancer in 2016 and yet more surgery at the age of 86 - so frail in body but in spirit, so tough - he cares for my mum at home, (91 next month) who has alzheimers. His courage and experience was what helped me face my cancer treatment and diagnosis.
Many lung nodules don't change at all or even if they enlarge due to inflammation or infection, often settle down without bothering the person. So much has changed on the treatment and research front since my diagnosis and many with stage iv live for years on new treatments if they can tolerate them...
good luck to you and your dad
Palliative Care 
