Hi there, wondered if I could ask for your advice please? My Mum passed away at the beginning of September from extensive stage small cell lung cancer.
It all happened so quickly. She went to the GP at the end of June for the first time, and was told she had a chest infection. Had a chest X-Ray done around then which didn’t spot any abnormalities to do with cancer, but did suggest she had pneumonia. When things didn’t improve, she kept seeing the GP in person and speaking to them on the phone multiple times, and was given antibiotics a number of times.
When her condition wasn’t improving, I took her to A&E on July 15th and she was discharged but had a follow-up CT scan booked for the following week. Took her again to A&E on August 1st which is the date she was admitted to hospital, and was same day doctors ended up calling with the results of her CT scan. She ended up staying in hospital from August 1st to beginning of September when she passed away.
I’m tormented by thoughts of whether I could have done more to help my Mum. Specifically, wondering if I had taken her to hospital on the week beginning July 22nd whether she would have had a better chance of survival. She called the GP that week but they didn’t really give her anything.
Do you think getting treatment a week / week and a half earlier would have improved her chances of survival? I have spoken to a number of doctors and nurses about this and they said situation would still be the same. Also spoken to people on other cancer forums and they echo this as well.
Written by
diond85
To view profiles and participate in discussions please or .
Hi - My heart goes out to you so so sorry for the loss of your mum. Please don’t torture yourself with ‘what ifs’ - in my personal experience when Inwas disagnosed it took from September 11th initial problem until 20 November so some 10 weeks before first treatment. In the intervening weeks many scans, test, biopsies etc had to be carried out. So treatment does not happen quickly all of the above has to happen before a treatment can be offered. It very much sounds as though your mum’s cancer was very far advanced and a week here or there would not have changed the outcome, You did everything you could at the time but the doctors and nurses are right and you need to be kind and gentle with yourself and allow yourself to grieve for your mum without these thoughts. Sending a huge hug x
Hi Elt79 , thank you for your reply, kind words and condolences. I’m sorry to hear about your cancer diagnosis, I very much hope your health is OK these days and that the treatment that was provided helped.
Thank you for opening up about your own experiences, and for your advice. It helps to hear other people’s perspective on something that has been running through my head so much, so thank you very much for your advice and for your words of comfort. I will try to be gentle with myself. Sending internet hugs right back.
So sorry for your loss - losing a loved one suddenly and unexpectedly always leaves us with the 'what ifs' but there's nothing that would have changed the outcome so please don't burden yourself with guilt on that front especially given how many times she sought help. sadly the symptoms of lung cancer overlap with other conditions and patients often have, like your mum, pneumonia/chest infections that can mask the underlying cancer.
Small cell lung cancer can be particularly aggressive and many patients are detected when already advanced. As I was recovering from my lung cancer treatment in June 2011, we lost a dear friend suddenly and unexpectedly within days of diagnosis and 10 days of hospitalisation after going for a CT scan he'd paid for privately in desperation after 6 months of being passed between GP, community physiotherapist and private chiropractitioner, osteopath, acupuncturist for his excruciating shoulder pain, it turned out to be widespread lung cancer in liver, brain, spine and lungs. I don't know what type it was but given his very rapid deterioration wonder whether his was small cell. Having been involved in lung cancer research since 2013, I doubt whether anything would have changed his outcome but do think if he'd been sent for a chest x-ray at the start instead of assuming his pain was muscular-skeletal, something could have been done to alleviate his pain and kept him more comfortable than he was. it was such a shock to all concerned - as it has been no doubt with your mum.
My own cancer was misdiagnosed as uncontrolled asthma, kept in hospital for a week (without responding to the asthma meds) despite a chest x-ray showing a lesion on my lung - not fitting the profile of a then typical LC patient - i.e. never smoker and just had my 52nd birthday, it was never anticipated it would be serious and took weeks to get a CT then PET scan and almost a month after surgery to remove the large mass that showed on all scans before I was diagnosed with non small cell lung cancer (adenocarcinoma).
As the medics you've spoken to and the forums you're in have all said the same, that nothing would have changed the sad outcome for your mum, maybe bereavement counselling may help you talk through the things that are troubling you as it's a natural aspect of grief to think we could have done more. take care of yourself. thinking of you at this really difficult time for you and your family
Hi JanetteR57 , thank you for your reply, for your condolences and for opening up about your own experiences. I’m very sorry to hear about the sudden loss of your friend back in 2011, my deepest sympathies to you. I can imagine how much of a shock that was, and how that would make you look back at what led up to his hospitalisation. I’m sorry to hear there were months when things were like that, and that he had to pay for a scan privately to get answers. Sorry also to hear you think the chest X-Ray could have helped work that, horrible when you look back and think those things.
I’m sorry to hear about your cancer diagnosis as well, and that it was misdiagnosed also. I very much hope the surgery helped, and that you’re OK health wise since receiving that treatment, and that you’re doing well these days. Never realised that these kind of misdiagnosis could happen with cancer until recently.
Thank you for your advice, it has provided comfort hearing other people’s thoughts on all of this. Has helped hearing that other people think that extra week or so wouldn’t have made a difference, but the nagging thought does get to me at times. Have looked into bereavement counselling and have found some groups in my area I could turn to. Thank you very much for your advice and support with this, it is greatly appreciated.
Very sorry for the pain that brings you here to ask this question. Please know that, if the cancer was large enough to appear as pneumonia on an X-ray, it was already large enough to have sent metastases throughout her body. A week, even a month, would not very likely have changed the outcome.
I send prayers for peace and comfort in the memory of happier times.
Thank you for your reply Denzie , and for your kind words and condolences. It helps a lot hearing other people’s view on something that has been running through my head so much. There’s so much I don’t know about cancer, is all so new to me, so your advice about the X-Ray and timescales I mentioned was really helpful. Thank you for your advice and words of comfort.
Hi Diond85, so sorry for your Sad Loss of your Mom. After reading what you wrote, I can only say 'please stop questioning yourself ' you have done all you can. Shamefully I do believe that X-rays and the CT scan should have flagged a bit sooner. My late wife went through SCLC but had treatment for 9months before she passed. Those 9months were honestly 'hell' Her quality of life was zero, and the hospital admissions were numerous. Sadly she passed away at home on 18/12/2019 at 12:40am after 14 hours of writhing in pain and screaming. Please just take from this 'You done everything in your power to help your Mom ' and you will come to terms with her passing. You never get over it.
Thank you very much for your condolences and for your kind words. Your advice is greatly appreciated, and not shameful at all - can completely understand why you’d think that. Chest X-Ray was done early, day after she first went to GP but no CT scan was ordered by the docs until she went to A&E middle of July. Have wondered if the first X-Ray didn’t pick up something it should have.
I’m very sorry to hear about the loss of your wife, and the experiences you had with SCLC. My sincere condolences to you. I can’t imagine how tough those 9 months were, and I’m very sorry she had to experience that. I had never heard of SCLC until recently, it’s such a horrible form of cancer and I wish we all didn’t have to deal with it and its aftermath.
Thank you very much for your advice and kind words. I can imagine I won’t get over it, but will try to focus on that instead of those what ifs. Thank you for taking the time to reply and for your words of comfort.
Hi there, thank you for your kind words and for responding about this. Sorry for doubling up with this enquiry, the thought was just running through my head a lot over the weekend. I’ll respond directly to your email, thank you for your advice about this and for your condolences.
Thank you very much, it is greatly appreciated and the advice I have received has been of comfort. I’ll respond to your email and kindly provided advice directly, thanks for your support.
Hi there, please do not think that there was anything else you could have done. This disease is incredibly aggressive and unfortunatly your dear Mum was one of the unlucky one's as only 15% of people who get lung cancer get small cell. My own partner (56 years old) was diagnosed on 17th July with extensive stage although it had not mastasized to any other organs except in his right lung and across his lymph nodes in his chest. His cancer has not responded to 2 cycles of platinum chemo and immunotherapy and is now causing compression of his superior vena cava which is the major vein which runs to his heart. He has maybe a couple of weeks left if we are lucky. There is nothing we can do and even though he started chemo this cancer can be chemo resistant as they call it. Therefore, rest assured that there was nothing your could have done to help your Mum. This disease is a terrible thing. Please find solace in your memories of your Mum as I am sure she would hate to think that you were blaming yourself in anyway. Peace and love. 🙏❤️
Hi Alfie2024 , thank you for taking the time to reply and for opening up about something so personal. I’m very sorry to hear about your partner’s diagnosis, and that is the outlook. I can’t imagine how tough that is, and I hope you’re taking good care of yourself. I’m sure your support means the world to your partner.
Never had heard of SCLC until recently, and didn’t realise there was a cancer that could be this aggressive, or there was one that could be chemo resistant. It is such a horrible disease, and I wish we all didn’t have to deal with it.
Thank you for your kind words and your condolences. It helps a lot speaking about something that has been running through my head so much, and hearing other people’s thoughts on it. Thank you for your words of comfort, and for replying with all you’ve got going on at the moment. It is really appreciated. Take good care of yourself too at the moment. Know it’s much easier said than done, but try to take it one day at a time and look after yourself as well as you can.
I'm sorry that I probably won't be able to give an in depth response but I just wanted to say I can completely understand your feelings. I am in pretty much the same position as you. My dad passed away on Wednesday. I feel like we never even got the chance to fit the cancer. We never even had the meeting where they sit down and tell you all the awful news because he ended up in hospital so quickly. His GP repeatedly gave him antibiotics after talking to him on the phone as it was just assumed it was a chest infection. Then by the time he was seen with symptoms like coughing up blood he got himself to the walk in centre. At first it seemed like stuff might have quickly and then every deadline passed despite us chasing and they just dragged their feet. My dad didn't die of the cancer and at first, whilst we were still waiting for any information and all the tests, he was a well man and you would never have known. But then he got the fluid on the lungs and he spent almost all of his last 5 weeks in hospital. He also was allowed out of the hospital but was given no information as to what to look for symptom wise. His cancer nurse didn't seem bothered when he told her how he was the day before we decided to get him back to hospital. It feels like a lot of what ifs and to me failures.
So I'm sorry I'm jumping on your post to describe my own story that I feel hard done by the way it all went but I'm living the same nightmare and thinking the same questions as you and it all feels so raw. Watching my dad suddenly die in hospital in an open ward was just awful. I hope we can both find some comfort eventually
No need to apologise at all Dadsecretary and I’m very sorry for your loss. My deepest condolences to you.
I can imagine everything still feels very raw and thank you for opening up about your story. It feels horrible when you put your trust in someone to care for your loved ones and end up feeling let down.
The what ifs are horrible, and when everything happens so quickly it does exactly feel like that - a living nightmare. Especially when, like you said, your loved one seemed fit and healthy one moment and then everything changed so fast. It really is hard to comprehend and wrap your head around.
I hope we both can find comfort too. I know it’s not much consolation but you as a family can know that you did everything in your power to get to the bottom of what was happening to his health, and did your very best to look after him and take care of him. I know it’s horrible when you feel there were opportunities that could have led to a different outcome. For both of us that could be our minds making us think the grass is greener on the other side, and there might have been other complications or the same outcome sadly may still have occurred if the treatment we had hoped for had happened.
If there were missed opportunities though that burden falls on medical professionals who saw him and not you. You all did everything in your power to look after and take care of him. My deepest condolences to you, take good care of yourself.
I just read your post, so sorry for your loss, grief is unique to each of us, I have a little understanding, my dear dad passed away on 29 April after bravely battling his lung cancer for over a year.
I won’t go over our story here but wanted to say, we all do the best that we can at the time, trying to make decisions in the most difficult and awful circumstances. Sometimes whatever we do including the consultants and their teams is just not enough, our mums and dads had great comfort from our love and the love doesn’t die, we hold them always in our hearts. I’m trying to also come to terms with it and the what ifs but I know my dad wouldn’t want to see my heartbreak so I ‘speak’ to his photo, give his jumper a hug and say “ it’s ok dad, it’s ok”.
I hope you will find peace and light in your journey. x
Hi Adaughter , thank you for your reply and your condolences. I'm very sorry to hear about your loss, my deepest sympathies to you. Your dear dad sounds incredibly brave to have battled cancer like that.
Thank you for opening up about something so personal, if you would like to talk about your story more I'm here to listen. And thank you for your advice, what you said resonated a lot. I can understand that sometimes no matter how hard we and others try it sadly just isn't enough. Think that's something I'm beginning to understand more.
I'm sorry to hear you've been affected by what ifs too. The mind can be such a powerful thing, and trick us into thinking we should have done something differently when - as you said - we did the best we could at the time, with the knowledge we had then.
I'm sure you were a great comfort to your dad and your support meant the world to him. And that is so true, the love we have for them and the love they had for us will always stay in our hearts.
I hope hugging your dad's jumper and speaking to his photo helps bring you comfort. That is such a touching thing to say. I've got a cuddly toy we gave my Mum while she was in hospital that I have with me all the time.
Wishing you peace and light in your journey right back at you too.
Hi , I'm so sorry for the trauma you have been through and the loss of your lovely mum. As others have said, cancer treatment takes time to begin, with biopsies, consultant appointments etc. I can promise you a couple of weeks would not have made a difference to the outcome. Its normal in traumatic grief like this to be tormented by 'what ifs' and the thought that you could have changed the outcome. Our brains like things to be logical, so the sense that we had control but somehow missed the chance to change the outcome is always what our brain will reach for. It doesn't mean it's true. I lost my first baby to stillbirth and have wrestled with this for years. If these thoughts persist, seek counselling/therapy, it will help.
My Dad was diagnosed with extensive NSCLC after also being diagnosed with pneumonia on an x ray, it's very difficult to think about what could have been if he had a CT at the beginning.
Hi Gardener37 , thank you for your reply and for your condolences about my lovely Mum. I really appreciate your compassion, advice, and support in trying to help me work through those what ifs by explaining this.
What you said about our brains trying to make us feel we had control makes perfect sense, and what you said about traumatic grief hit me. I knew what I had been through had been traumatic, but hadn't been thinking of my grief in that way.
I did want to add / explain my Mum did end up having treatment, which is one reason a lot of these what ifs had been persisting. She ended up getting a stent put in, but then a few days after that had to be intubated with a ventilator. She had one round of chemo while on the ventilator, and a tracheostomy as well but they couldn't wean Mum off the ventilator and she ended up passing away.
So many things around that time have haunted me, like my Mum not being able to speak on her last day and how scary everything must have been for her. Kept wondering if an extra week in hospital might have helped her avoid such a horrible situation, or get into hospital when treatment may have been more effective, but everyone I've talked to doubts it.
I'm very sorry to hear that you lost your first child to stillbirth, and that you have wrestled with what ifs yourself. I can't even imagine what that's been like for you. I hope those what ifs don't have the same hold on you these days, or at the very least the power of those what ifs have lessened, and that if you sought counselling it helped. My deepest sympathies to you for your loss.
I'm really sorry to hear about your Dad. It's horrible and frustrating that cancer can be like this, never even knew cancer could get misdiagnosed. I know what you mean about the CT scan, it's horrible to think about those kind of what ifs but, as someone once told me, the burden of any medical decisions shouldn't fall on us. When we take our loved ones to the doctor, we trust them to take care of them and don’t expect to have to later wonder about those kind of things.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
? Brain mets
How do we escape our neglectful hospital?
My mum has non small cell lung cancer that has spread to the bone in her leg. Has anyone got any information or experience regarding this.
So scared I have a CT on Monday and not coping very well 
