I think its standard procedure for metastatic LC. Chemo, radio, immuno only.Can never understand why more people don't question it. Can only presume its the same reason pancreatic patients don't complain more- there aren't enough 'survivors' to fight for better treatment options.
Or people become too ill to have the energy to question things.😪
My mum was diagnosed with stage 4 lung cancer because it had spread to the lining and fluid around the lungs which I believe makes it difficult to then remove with surgery as the cells are not necessary in a solid structure to remove. It didnt make sense at all to me not to remove the part of the lung where the main tumour was, because surely that would help, but was always told no.
It's a good question and having had surgery in Dec 2010 but it hadn't spread I was shocked when I got into the world of cancer research how few patients are detected early enough for it to be an option. However as many patients already have impaired breathing from COPD, asthma or other damage caused to their lungs or other organs, it's a much riskier operation and removing the ability to breathe with other conditions would be considered harm. Systemic anti cancer therapies are used in good combinations and very different from my time of diagnosis and new treatments are being found all the time which has changed the order, dosage, agents and combinations of treatments now made in a much more personalised way dependent on the various mutations/biomarkers. Other cancers are now following the example of lung cancer treatments in trying to look for specific treatments rather than blitzing everyone with chemotherapy.
Some patients do find the systemic anti cancer therapies that aim to catch the cells wherever they've spread to, shrink their tumour enough for surgery to be possible but for the majority this isn't offered. Immunotherapy has also changed the treatment landscape for those eligible and SABR (ablation) also used to zap metastases in some sites. When evidence exists for improved outcomes, these are considered by the regulators and usually taken up - but evidence also exists that breast and prostrate cancer patients have tended to be 'over treated' which is considered harm as many cancers would not progress further over 10 years without some of the treatments but that isn't the case for lung cancer.
One thing I've learnt is that cancers are not all the same... irrespective of the stage ...
Stage 3 lung cancer still has clinicians quite flummoxed to the best approach with some offering surgery alongside other modes of treatment and others not and there are still many in the UK who don't accept any treatment at all despite many being on offer.
It's not a cost issue - as NICE guidelines, BTS guidelines and national optimum lung cancer pathway outline what should happen to people at different stages for lung cancer and these are clinically driven but a lot does depend on the patient, accessibility to the treatments as not everything is offered at all hospital sites and some even access other treatments available only through clinical trials, compassionate use or cancer drugs funds. Always ask your clinician to explain why you're being offered or not offered treatments... hope this helps
Very interesting answer. I don't have comorbiditiess, no copd or asthma. In fact I did very well on the lung function test. But still, because I'm Stage 4 = No Operation. Seems a shame really.
there are a couple of people in an online forum I'm on in the Uk where systemic therapies shrunk their tumour enough for surgery to be performed but it's quite rare. surgery may also be difficult if the tumour itself is too close to certain structures increasing the risk.... but you're right to ask the question about why cancers are treated so differently. At one of the first thoracic conferences I attended one of the speakers had gathered a lot of press coverage of breast cancer awareness month where all the descriptions was of brave, warrior patients, victims etc but in lung cancer awareness month what little coverage there was always suggested blame or showed images of people smoking reinforcing the false belief that it's only a smokers' disease. sadly this image and lack of awareness remains .... as we're in lung cancer awareness month, very few people even know that compared to awareness of November (mens' cancers/health) and October being breast cancer awareness month and images everywhere in magazines, shops, programmes etc.... quite unfair all round I think....
I have lost faith in some of the NHS consultants. My tumour shrunk from 9cm to 2cm in a rare case of a very successful palliative radiotherapy. I was too ill for any other treatment when first diagnosed, but the reduction of the tumour re-inflated my lung (viewed on xray only, no scan) but not only did the respiratory consultant reject any and all treatments, she also rejected my request for follow up monitoring to see if the tumour was still shrinking or had started growing again. I have no other illnesses (not even minor ones) so could see no reason for foregoing treatment and I have a very good constitution and I am doing all normal tasks and feel very well apart from my breathlessness. I was so shocked I felt I was being a nuisance and should just go home and die!
I managed to request an appointment with my oncologist who did follow up with a scan and I am now on chemo, but my assigned chemo consultant is a pancreatic cancer specialist who I have never seen but am seen every few weeks by a bowel cancer specialist???? I was also rejected for surgery (even when tumour was 2cm) as I am told my mediastinal lymph nodes are enlarged and they are assuming they are cancerous although no biopsy done. I suspect once you are diagnosed with stage 4 you stay at stage 4 whatever happens and the recommended treatment (or no treatment) stays the same, but it just may have been my personal experience.
You have to push for treatment, and don't take their recommendations as gospel. Do your research (on purely medical sites) and check what they say. I have been fed some right tripe in order to discourage me from life extending treatment. It worked, for a while. I am wiser now and do not refuse any treatment until I have done my own research. EDIT: I should note that the cancer has not spread beyond my left lung, apart from the assumed cancerous lymph nodes. I am told my cancer is incurable, but many people successfully live with cancer. That is my aim and I hope I achieve it for as long as possible (but not beyond an enjoyable existence). I still feel luckier than many. I have had a little miracle with the radiotherapy, I am still here beyond my original prognosis, I am feeling well and life is 'normal'. 'Normal' suits me very well.
get DNA mutation markers completed; I have EFGR exon 20, and 19 and have been successful eradicating bone and brain mets ( which made me stage IV nsclc) with the targeted drug Tagrisso,
I have been told that I am not a candidate for Immunotherapy due to exon 19. Not a candidate for surgery due to location centrally between lungs and beside arteries/pleural area. I will follow this for other hopeful replies
that's the description given to the majority of UK patients detected at stage iv - treatable not curable but the aim is to detect them sooner when more options are available by introducing lung health checks in certain areas and now recommending lung screening for those most at risk (although we're a long way from getting all the resources needed for that yet)...
Yes I had understood that - without screening it is unlikely that cases are caught early as by the time symptoms appear it’s already at the later stages. We will keep campaigning for this!
those cases caught earlier are often, like mine, where a patient has symptoms and it shows up on imaging via A&E admission or when investigating for other causes and found 'incidentally'. People like me (52 at diagnosis/treatment) and never smokers are currently not within the parameters of those 'most at risk' for whom the pilot health checks and hopefully national screening will apply when introduced so much more awareness is needed all round that anyone can develop it.
We celebrated when my wife's lung cancer shrunk by half and was in remission. Her pleural effusion also cleared.We were back to normal again but unfortunately she died of a brain met a month later. She passed 11 days after diagnosis.
At no stage was a brain scan done to check for mets before or after her treatment. Only when I insisted did they finally do a scan
I am bitter about this as she could have been saved had it been detected earlier.
So sorry to hear about your wife. It’s a similar story to my husband. He was given the all clear from lung cancer but 2 months later, the oncologist ignored our concerns it had spread to his brain & refused a head scan. Sadly after 2 ignored referrals from our GP he fell & was scanned in A&E where several brain mets were diagnosed. The oncologist never apologised or explained & after one chemo session which far too strong for his body he passed away in my arms 3 weeks later. I am sure the NHS is made up of excellent cancer hospitals ie Christie, Royal Marsden etc but the other hospitals are a lottery of whether youare listened to & receive the best treatment. I repeatedly asked for a different oncologist but was ignored. Like yourself I am very bitter about not being listened to.
sorry to hear about your husband - I was also treated in a local district general hospital and passed around a system of different Trusts for different diagnostic tests and treatment and follow up - it's a very different experience from those specialist centres where everything is on one site. When I asked my local Trust lung nurses how many patients ever ask for a second opinion as I'd been asked to speak about the national optimum lung cancer pathway for an event, they said 'none'.... yet some of those I meet from other parts of the country not only have excellent care, they also request second opinions... the variation of the various aspects of care around the country are highlighted every year in the national lung cancer audit but for most, it's just not practical to seek care from another trust miles away.
Sorry to read about your wife - sending condolences.
It's not just cancer this happens in - my sister recently died suddenly and unexpectedly of a heart attack yet had no heart condition diagnosed. Looking back she had complained of increased breathlessness and swollen ankles/feet for over a year but as she already had asthma and lymphodoema, her GP and lymphodoema nurses simply told her to increase her inhaler and wear compression socks and tight shoes. Nobody thought to investigate her worsening symptoms may have another cause...
We lost my mother in law 22 years ago who'd had a swollen knee and waited weeks for investigation and went in to have an arthroscopy (day case) but wasn't allowed out that night as physiotherapists had gone home so she needed to learn how to use the crutches.
The next morning the hospital phoned saying she'd fallen in the bathroom and had a funny turn and was poorly so my partner went and she was in bed. his daughter went in the afternoon and she was sitting up in bed chatting and ok but by 6pm when he arrived, they took him into a side room and told him she he'd died. cause - pulmonary embolism - likely what had caused her knee to swell in the first place, dislodged when she fell but her GP had given her ibuprofen and gel to relieve the swelling.....
Things even worse since the pandemic with so many face to face appointments lost for GPs to see patients in person and cancer has had more investment/priority in restoring services than other conditions so there are likely to be many in positions of undetected conditions suffering various symptoms without known cause - some of which could be very serious.
Thought provoking question, but I genuinely don't think we're being duped in any way. After I was thrown into this cancer world 2 years ago, I've spent a lot of time trying to find what my husband and I can do to make the best of a bad situation, and I genuinely believe that the treatment options given for stage 4 lung cancer are the best we currently have, based on thorough clinical trial results.
As we all know, stage 4 usually means its not curable, but nowadays it is very treatable. With regard to surgery, I found this on the verywell.com website....
Surgery typically is not used to treat stage 4 cancer. However, if the sites of spread are small and there aren't very many of them, they can be removed along with the primary tumor. In these instances, surgery may relieve symptoms and help prevent the cancer from spreading even more.
So, yes, surgery is sometimes offered. For stage 4 lung cancer though, it's likely the cancer is in several sites in bones or the brain or liver - or any other number of places that would be hard to operate on and cause the patient more harm than good. My husband would have needed operations on both lungs and multiple bones to remove all the tumours he had at the time - instead, he had systemic treatment (chemo and immuno) and he is now NED, and living as a very fit and healthy 55 year old.
WRT the cost, again, I don't think this is why its not offered. My husband is treated privately - so he would have been offered surgery if it was the right thing to do, but it has never been discussed. And actually, the cost of immunotherapy is huge - we don't know what the NHS pays the drug companies of course, but privately it is several thousand pounds each cycle.
I hope your treatment goes well and you also get great results from it. x
My husband was Stage IV on diagnosis (Jan 2022), with a single brain met. The brain met was operable due its positioning, and was resected successfully. We then asked his local oncologist to consider a surgery referral for his primary lung tumour. The oncologist's initial reasoning was that surgery was not a viable option, due to the Stage IV diagnosis. However, we were keen to remove as much cancer as possible from his body and since he is quite young (48) and otherwise fairly healthy we advocated strongly for the surgery, found an excellent surgeon willing to operate, and (to his credit) the oncologist changed his position. He had an upper, right lobectomy at the Royal Brompton in April this year. This lobectomy was done privately - we are lucky to be covered by BUPA under my husbands employment policy, but I believe that the surgical team at the Brompton also does NHS surgeries.
I understand that: (i) the age and health of the patient; (ii) the primary tumour location, and (iii) the spread and location other any other mets, all impact whether lung surgery is possible or, indeed, recommended for the patient. I would recommend advocating your position and making sure you understand the reasoning given for any treatment plan. It may also be helpful to get a second opinion. Finally, just to clarify, we are fully aware that surgery in Stage IV is unlikely to be curative, as the cancer has already spread. It was not an easy decision, and the surgery itself obviously involves risks, and the recovery was challenging, but we are happy that it was the correct decision for him.
Best of luck with your treatments, and hope they work for a very long time! x
Each type of cancer has its own unique characteristics, how aggressive the tumour is, the type and spread of the disease and how well it responds to treatment. As every type of cancer is different the treatment offered will be tailored to the individual patient. Treatment guidelines are something that are continually reviewed by NICE this is to have the most effective type of treatment for each individuals specific type of cancer.
It is difficult to compare cancers for example stage 4 breast cancer treatment is very different from stage 4 Bowel cancer, the tumour types have different histology so responses to chemo, surgery or radiotherapy will vary greatly.
Over the last 20 years the development of new surgical techniques such as VATS surgery for lung cancer has vastly improved the outcome for many patients, surgery is now offered to a much wider range of patients who in the past would have been ruled out due to co morbidities. There are still instances where surgery is not possible this can be due to technical difficulties caused by size and position of the tumour. With stage 4 lung cancer often the disease has already spread to other parts of the lung or other areas of the body, so the focus is on controlling the disease, slowing or preventing further spread.
There always needs to be more research into what treatments give the best outcomes for lung cancer patients. Over the last few years we have seen a great many changes as to how lung cancer is treated with the addition of targeted and immunotherapies, this has greatly improved outcomes for many patients. Stereotactic ablative radiotherapy (SABAR) has also been introduced, which is a highly focused radiation treatment that gives an intense dose of radiation concentrated on a tumor, while limiting the dose to the surrounding organs, this can also be used as an alternative to surgery.
Please do not hesitate to contact us if you would like to discuss anything, you can email ask the nurse 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.
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