Nsclc stage 4 with brain mets - The Roy Castle Lu...

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Nsclc stage 4 with brain mets

JLOD2023 profile image
8 Replies

My dad 75 year old was diagnosed in November with stage 4 NSCLC. He started chemo and radiotherapy in Jan and was told although not curative they could help manage and prolong his life. We felt positive as it was two singular tumours, although fairly large, there was just one in the lung and one in the brain.

He had his first chemo on the 4th and reacted ok, tired but not sick. His first radiotherapy session on Jan 9th went well. Sadly on the morning of the 10th he collapsed and died at home. We are all shocked and devastated. His PM found no bleed or catastrophic incident and disseminated lung cancer is the cause to go on his death certificate.

His latest scan which thankfully he never had the results for showed liver and spleen mets so it was aggressive and had spread in just 6 short weeks.

I just feel at a loss, devastated and so sad. What could have happened?? Has anyone heard of this happening?

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JLOD2023
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RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hello JLOD2023

I am very sorry to hear of the sudden loss of your father, it will be a huge shock to you and the whole family.

Cancer can be very unpredictable and not what act in the way which we would expect, even on treatment progressing in a very aggressive manner. This is very difficult for you all as there was no time to adjust or prepare for this sudden death. I hope as a family that you plenty of support to come to terms and begin grieving for your loss, please do not hesitate to contact us if you wish to chat or discuss anything: our email is lungcancerhelp@roycastle.org and our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

The Loss Foundation is a charity that offers bereavement support for anyone that has lost a loved one to Cancer or Covid: thelossfoundation.org/ and their helpline number is

0300 200 4112

Cruse UK bereavement support provide help, guidance and counselling if you feel that you need it cruse.org.uk/ their helpline number is 0808 808 1677

Our deepest condolences

The Roy Castle Support Team

Eglingham profile image
Eglingham

I'm so sorry for your loss 🙏

JanetteR57 profile image
JanetteR57

So sorry to read your post which must be devastating for you and your family.

I lost a dear friend suddenly in June 2011 - he'd had worsening and debilitating shoulder pain for 6 months. GP sent. him to physiotherapy and he'd tried chiropractitioner, osteopath, acupuncture for relief but to no avail. His life was shrinking but to the pain he was suffering.

His family pushed him to pay privately for a CT and on the day of the scan he collapsed on arrival at the hospital, confused and didn't utter a coherent sentence again. He had multiple tests and was put in a side ward. His wife said she thought they'd put him there to die so I was very shocked, him having gone in with a bad shoulder. He was in for 10 days and just 3 days after his family were told he had widespread lung cancer in his spine, liver, brain and lungs, he died. He never did get any treatment.

I was recovering from LC treatment at the time and it was a tragic shock to me and his family. His situation spurred me to read/research more about lung cancer and at the time less than 5% of all cancer research was on lung cancer after decades of under investment. Since then the situation has improved with more new treatments and more being discovered all the time but there is still an awful lot not known to discover. His death spurred me on to raise funds for lung cancer research and also get more involved.

Sadly some conditions are unpredictable and it's hard to know who will respond to treatments and how aggressive the cancer might be....

Sending you strength and courage to face this with your family.... thinking of you.

JLOD2023 profile image
JLOD2023 in reply to JanetteR57

thank you for your reply. What a sad situation for your friend. I find it unbelievable how it goes unnoticed for so long until really it’s too late. Thank you for sharing, it really is such an unpredictable disease x

JanetteR57 profile image
JanetteR57 in reply to JLOD2023

It can be although the treatment landscape now bears no resemblance to 2011 when he died - there have been so many more treatments trialled, approved and available - but the pandemic sadly prevented many people from being detected sooner when treatment options may be different. Every treatment mode has changed too - surgery is now mostly keyhole, SABR (ablation a form of radiotherapy) used widely yet wasn't available back then, targeted treatments available for many mutations - back then only EGFR had been identified and the only treatments available were via clinical trials yet now widely available, immunotherapy hadn't been introduced and all more traditional treatments like chemotherapy and radiotherapy have changed in terms of agents, frequency, doses and now mostly in combination with other treatment modes.

Many patients are now living with lung cancer - moving from one treatment to another if their body develops resistance so having treatment choices has changed the situation for many - adding immunotherapy to some treatments has also changed the game - and many now living years - moving towards the possibility of managing it as a chronic disease for some in the future and others are in remission/effective treatments allow them to recover fully. What is still unpredictable is who will respond positively to which treatment but as you rightly say, if they're not detected until late, the options sadly reduce.

Improving the situation so fewer end up in this rapid deterioration is vital - so that means GPs spotting the signs sooner and recognising them for what they, with full investigations, public awareness campaigns that anyone can develop lung cancer, and healthcare system to recover its backlog so when people need treatment they can access it. Many of these aspects require more staff so government needs to do more in terms of their pay, morale, training, attracting and retaining them and supporting them throughout their career too.

Not an easy fix - but with the vast number of lung cancer patients increasing every year, it's vital for everyone that more focus is given to it.

JL76 profile image
JL76

So sorry for your loss, we experienced a slightly similar situation back in October 2022.

My fit and healthy 48 year old husband sadly passed away on the 6th November 2022.

It all began on the 3rd October 2022 when he coughed up some blood that morning  whilst brushing his teeth. We got him an appointment that day to see our local GP who after a quick check of his chest was not overly  concerned.  He referred him for a chest x-ray to see what was going on.  Friday 7th October he was called back to the GP to say that he was now concerned as the x-ray showed shadows and lesions on his lungs and that he needed to have further tests. Over the next 3 weeks my husband had a CT scan, an Echogram, a lung function test, a biopsy and an MRI scan. Not once did anybody mention what any of the results was or what they thought or knew it was. The waiting and not knowing over those 3 weeks was the worst. We tried to keep busy by going for 6 mile walks as my husbands mental health was being affected. He was very down and thinking the worst as some people do. We have  3 beautiful daughters (29,/ 15 & 12years)  we told our 29 year old what was going on and we mentioned to our 15 & 12 year old that dad was having some tests as he was feeling tired and had a bit of back pain ( which by now he had) Saturday 29th October my husband said he couldn’t grip properly with his right hand and it seemed a bit limp. Monday the 31st October I contacted the consultants nurse to discuss what had happened over the weekend with his hand and that my husband was getting quite breathless and coughing up considerable amounts of blood, particularly at night. He said there wasn’t much he could do and that we need to have our appointment with the consultant ( which we still didn’t have a date for) I asked if the results where back and he said that tests was being looked at by Christie’s and Salford and that if my husband gets any worse to call 999. Tuesday 1st November my husband called me into the living room around 5pm to his hand shaking vigorously, at the time I wasn’t sure what or why this was and called 999. At 7;30pm the ambulance arrived and by this time my husband was very agitated, clammy and pumping with sweat. Whilst the paramedics where on site my husband had a seizure. He was taken to our local A&E where he had another seizure. Whilst in A&E (resus) the doctor came over to us and asked if we knew what was going on and had we been told anything. We explained we hadn’t and it was then that the doctor told us that my husband had cancer in both lungs and his brain. He was moved to a ward, then within a couple of hours moved to a side wide with open visiting ( which at the time I thought strange) he was on oxygen, steroids to help the swelling in his brain, morphine, Ora morph,and paracetamol, and couple of others I can’t remember. He had a couple of good days with visitors laughing and joking but also had bad days where he was in a lot of pain and his speech was affected. Friday 4th November his consultant came to see us to confirm the he had stage 4 cancer in the lungs and brain. He said that the cancer had cannon balled in his lungs and that he had 3 spots on his brain.  They didn’t quite know where the primary cancer has started, however they was going treat it as primary lung cancer. We was told he would be going over to Christie’s hospital for  treatment ( possibly Chemotherapy and Immunotherapy)  on Sunday 6th November.

Sunday 6th November we got a call at 3am to say that his oxygen levels had dropped and that we needed to go. My husband was sat up when we arrived and questioned what we was doing there at that time. We  said the nurses where concerned about his oxygen levels and wanted us to sit with him as he was a little anxious and agitated, ( we couldn’t tell him the truth) A doctor took us into a room to discuss what was happening and that he might not make it through the night. We had to prepare for the worst. We asked to make him as comfortable and pain free as possible which did take some time. myself and eldest daughter sat with him until he peacefully passed away just before 4pm that day. 

We are absolutely heartbroken and devastated 💔 it was 34 days from that first symptom until passing. Previous to  that he was fit and healthy with no symptoms; no cough,  no chest infections, no headaches, nothing. His death certificate said he died of a metastatic cancer of an unknown primary. we feel that we wasn’t told everything and  that they was keeping something from us. I have read peoples post on her about the size of  peoples tumours and nodules etc and they never told us anything like that. Never showed us an image of any of the tests and I just feel I want to know more. Apologies this has been a long read but as you can imagine it’s been quite a tough few months for us as a family. I have lost my 48 year old husband ( I am 46 years old), our girls have lost their amazing father, a father has lost his youngest son, brothers and sister have lost their youngest brother and friends have lost an amazing man .

My thoughts are with you and your family xx

JLOD2023 profile image
JLOD2023 in reply to JL76

I am so sorry, such a heartbreaking and devastating thing to happen. So similar to what happened to Dad, he was fit and healthy up until mid December when he really became breathless and lost a lot of dexterity in his left hand side. So similar to your husband in how quickly things changed. We found out about his brain mets after a strange episode where he had numbness and tingling in his face and arm. We thought it was a stroke but once they’d scanned him they confirmed it was a tumour. The deterioration was so quick I don’t think the treatment would have worked even I f he’d lived long enough to complete it. Just awful.

Sending you strength and my thoughts xxx

JanetteR57 profile image
JanetteR57 in reply to JL76

so sad to read these stories of rapid deterioration for some... when my friend died and his main symptom was a bad shoulder yet he felt fobbed off by his GP, I raised it at the CCG board I was on as GPs thought it was good to refer people to physio, not thinking it could be something more sinister despite shoulder/backache being listed as potential known symptoms of lung cancer. The only recognised symptoms most know are coughing up blood and continued cough - I had neither - only a sudden onset violent cough (no blood), stress incontinence when I coughed, difficulty swallowing and inability to breathe properly (not breathless as such) just felt things were serious.... thinking of you and your family at this difficult time.... this really needs to change for everyone's sake.

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