I was told by one of the nurses I called that this was a really good place for me to come to for support and better than googling stats etc
My mum was told yesterday that she has lung cancer I am in bits, cannot comprehend it all and can’t stop crying. It is so painful that I can’t even go and see her because of this virus.
My mum is 74, but so young for her age. She still works - as does my dad- and she has never been ill. She is an ex smoker (stopped many years ago) and has no other health issues. It all started when she lost her appetite about 6 months ago. My mum is slim already so the stone in weight loss that’s happened became very apparent when I saw her one weekend. I was worried, but she said it was because she was stressed. Then one day in Feb, she mentioned an annoying dry cough which she’d had since Sept. That’s when alarm bells really rang for me. We managed to persuade her to go to doctor who sent her for X-ray. The X-ray showed ‘consolidation’ and they said she had pneumonia. Then, after two lots of antibiotics, she had a repeat X-ray 6 weeks later which showed no improvement so a CT scan was ordered.
She saw the doctor at the hospital yesterday. My Dad went with her but waited outside, then she had to get him to come in for the news. Mum was told she had stage 3b lung cancer and that it was in the centre of her chest? And neck? They took a biopsy from her neck.
I am devastated. The stats online (even reputable sites like cancer research) show such terrible reading. I understand that she has to wait for the biopsy results to find out what type and they have booked her in to oncology already. She should be getting a call from a nurse next week.
My mum is coping ok at the moment, although the shock has effected her appetite even more. She told me that with the right treatment she could get another 5 to 6 years, but from my reading that doesn’t look right.
I also wanted to know if anyone can reassure me about a couple of things.
Firstly, I am terrified that she will find out it has spread beyond where it already is. I know the doctor told her it was stage 3b, but how can he know that from a ct scan. I can’t imagine they would have scanned her whole body - she said the scan literally took minutes.
Also, mums symptoms were the dry cough and weight loss. I am frightened that the weight loss is a sign that it’s even worse than we think? She has no breathlessness, or pain or other symptoms, but the weight loss seems really worrying.
I am so sorry for going on. I’m just so frightened. My mum doesn’t want to talk about it yet, my dad is in a state and I have my 10 year old daughter who I am trying hard not to cry in front of.
If anyone can offer any wise words I would really appreciate it.
Sarah
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Leccilats
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I’m / was stage 3b and was the same as your mum with symptoms and smoked many years ago. That was from Dec 2018 I responded well to treatment I’m 49.
I went through treatment four rounds plus radio.
There’s so much that they can do these days. I talked to a lady who was nearly eighty and it had spread to her back and hip they started chemo but then moved her onto immunotherapy which had really good results so I’m told . She’s still doing well x
There are different types of lung cancer and the treatment varies depending on the type that your mum has. It might be worth your Mum asking more questions at her next appointment or on the phone with a lung cancer nurse. Treatments for lung cancer have changed a lot in recent years. Also the information that you read on the internet is often out of date. I would say it’s best to find out the details from your Mums team, I find it useful to write the questions down beforehand. Thinking of you all x
Hello Sarah - totally understand how you must be feeling welcome to a great forum. I am 66 and live alone with two grown daughters - I remember how they felt when I was diagnosed stage IV NSCLC with brain and adrenal mets in October 2018. Please don’t read stats and leave Mr Google alone. I had a dreadful prognosis however I am doing well - living with cancer - yes there have been dark days but with new treatments coming on lung cancer patients like me are doing well. Stay strong-your mum will speak when she’s ready - it is a lot to process for you all. Wishing you all the best. Liz ❤️
Hi Leccilats
I was diagnosed with stage4 lung cancer in 2016. The oncologist told me that the average survival post diagnosis was 6 months. Four years later, I’m not average! I did research those stats on Google, and sadly they are very heavily dominated by smokers, in their 70s, male, late diagnosis, and with COPD or other conditions. And they are 20 years out of date.
Concentrate instead on the fantastic developments in the longer term care of lung cancer conditions. I have had chemotherapy, Immunotherapy, radiotherapy, chemotherapy (again) and some limited surgery. Lung cancer, as with other cancers, can become a long term chronic, manageable condition.
Hi. So sorry you have to be here however it is good go find out more if you can from reutable sources. My mother has small cell lung cancer stage 3b. No cough just a pain in her arm that gradually got worse and chest pain. Diagnosed May 16. 5 rounds of chemo with significant reduction, 2 weeks radiotherapy and procranial irradiation, all finished August 16. Follwed by 3 monthly check ups. Now at 4 years no change, treatable not curable, told likely at this point not to restart but who knows. Try get yourself a macmillan nurse they are very supportive when you have questions. Try and go to the meetings if you can and ask questions how silly you think they are. Try and get your mother to keep her weight on for energy for the fight ahead. As it goes on you learn to calm down and get used to the idea. It sometimes is not as grim as the data out there that is generally very old and look after yourself so you can be as supportive as you can!
I agree with everyone above, there are some incredible advances and cancer is by no means the death sentence it used to be. I've overcome lung and brain cancer and now fighting liver cancer and actually I'm fine and whilst there are never any guarantees your Mum has got a few more years in her yet!
By the way, the terror you feel is normal. It's like drowning, but as treatments start you realise there is a shore you can swim to and before you know it you are out of the water and feeling safer.
Thank you from the bottom of my heart for your replies. It really helps to hear that people can live with the illness. All I want to do is talk talk talk about it. I suffer with awful anxiety normally so finding it hard to keep the lid on. My mum walks easily and apart from the dry cough and weight loss you would never know.
How accurate can they be to say she’s stage 3b without results from biopsy?
I’m sorry if I keep asking the same things but until next week I can’t get any answers and with this lockdown I can’t talk to mum properly.
Hi there. Firstly, I’m so sorry - but - know you’re not alone. My mum is 74 and was diagnosed Stage IV NSCLC in November. The toll it’s taken already is pretty immense, not least on me and my dad. But the sun is shining and she lives! So many people have gone already through cancer and - god knows - COVID-19 but where there’s life there’s most definitely hope. I feel sick and scared too. It’s heartbreaking. Nobody wants to lose their mum. I’ve taken great comfort in reading about death, ironically, to demystify it and take away the shock. There’s an amazing book called With The End In Mind by a palliative care nurse Dr Kathryn Mannix that really helped me. Also a wonderful documentary called Griefwalker which is available online. You might not want to contemplate losing her and I understand that. But sometimes when you look the worst in the face, square on, it makes everything you’ve still got come into focus. I hope your mum isn’t too upset. My mum completely lost her appetite and she found that homemade chicken noodle soup was the only thing she could eat so I’ve been knocking it out tegularly! If you want the recipe, I’ve got a great one given to me by a Jewish friend. I can post it on here if you want to try it. Much love to you and your family. Hang in there. X
I am so sorry to hear that you are also going through this GoldenDoodle. Thank you for sharing your story and for the tips. I don't think I can face the thought of my mum not being around at the moment, but will consider the book/prog you've suggested. Will ask her if she likes chicken noodle soup and get back to you about that. X
I am sorry to hear about your mum’s recent diagnosis. As you can see from the posts you have already had you will get a lot of support from other people in this discussion forum.
The doctor requested a CT scan to help to diagnose lung cancer and it can also show the stage of cancer, how big it is and whether it has spread outside of the lung. There is easy to read information from Cancer Research UK and an explanation about staging available at the following link
Knowing the cancer stage can help you mum’s doctors decide which treatment she may need. The scan looks at her lungs and other parts of her chest. It can also look at her liver and adrenal glands (the adrenal glands are hormone producing glands on top of the kidneys). Sometimes it’s not possible to be certain about the stage of a cancer until after a biopsy or surgery.
Her care will be managed by a multidisciplinary care team (MDT) (this includes for example, consultant oncologists, physicians, radiologists, thoracic surgeons and lung cancer nurse specialists). The MDT meet regularly, and she will be referred to a specific consultant oncologist who will discuss the recent scan and biopsy results with her. The results will have been presented at the MDT team meeting where a joint decision will be made by the MDT members as to how her care will be managed and what treatment options are available based on the results of her various investigations.
Your mum and dad (or whoever attends the hospital clinic appointment with her) will be able to ask any specific questions or concerns she has with the oncologist before any treatment starts. It is a good idea to write down any questions she may have and she can ask them at the end of the consultation. She will also be given the contact details of the lung cancer nurse specialist attached to the team. She/he will be a good contact if you have any specific questions about your mum's treatments in between scheduled hospital visits.
Weight loss is a common symptom in lung cancer and the attached links gives some tips to putting on weight cancerresearchuk.org/about-...
I have attached a link to the Roy Castle Foundation website where there is a lot of information available regarding living with lung cancer and managing a lung cancer diagnosis.
Research is ongoing about lung cancer and there are many new treatment options available, the oncologist will discuss them with your mum at the hospital out- patient clinic. Many people are living fulfilling lives despite their diagnosis as cancer is recognised as a chronic illness.
There are some inspirational stories about lung cancer survivors on our website available at: roycastle.org/category/pati... When you have some free time you may like to have a read through some of them.
If you or your mum have any questions to ask before or after her hospital appointment, please don’t hesitate to call our Ask the nurse helpline Freephone 0800 358 7200(option 2).We are available Monday-Thursday 9.00am-5.00pm.Friday 9.00am-4.00pm. or email lungcancerhelp@roycastle.org
You can continue on the thread that you are on own, no need to start a new one unless you want to. Glad that the nurse has been in contact with your Mum.
Our freephone nurse led helpline number is 0800 358 7200 if you wish to discuss anything and will be open from 9am -5pm Monday to Thursday and Friday 0900-1600.
Good to read the posts you've received in response. I felt the same when I was told in Dec 2010 that I had to lose half my left lung and diagnosis confirmed Jan 2011. The stats at the time were even scarier and forums like this didn't exist. In the last 5 years or so I've become heavily involved in lung cancer research and advocacy and attend some amazing conferences/workshops and hear about the various treatments and changes in treatments since my diagnosis. I've also met some amazing survivors and those living with cancer and been astounded (like the condition itself) at the variation of experiences and treatments. I'd suggest if you can't leave the internet alone - use Roy Castle lung cancer foundation as it's dedicated to lung cancer - its information is regularly updated with clinical input and reviewed by patient panel (I'm one of those) for readability. For now, I'd just look at the general information - getting a diagnosis as until it's identified what the treatment will be, there's little point bombarding yourself with unnecessary information at this stage. There are questions suggested in the booklets online for you/her to ask her clinician which I'd recommend asking. It's important to understand what the regime might be (even if it may currently be different due to virus) in the future. I found reading helped me - there were a couple of really good books for you as a carer/relative and there are also useful resources on Macmillan about talking to those with cancer. The books I'd recommend first are 'what can I do to help?' by Deborah Hutton ( a lung cancer patient) and 'cancer is a word not a sentence' by Dr Rob Buckman. They deal with the general overwhelm/feelings and the need to tackle life practically and holistically - as she's still your mum and it can often be easy (a bit like the news about the virus) to think the condition/diagnosis will be her all consuming time - it can be if others make it but that won't help her - so do things to help and support her. good luck.
Thank you so much for your reply. I will definitely stick to the RoyCastle site from now on. I have managed to go from thinking 3b wasn’t too bad in the context, but since seen it’s regarded as advanced and talked about alongside stage 4. This was the last thing I wanted to hear. Also, the fact that if she did have the Nsclc, then there’s still only a small chance that it will be one of the ones that have the characteristics needed for the targeted or immunotherapy. Like you say though, I just have to wait to hear what they find.
I think my mum is probably glad of the lock down measures as it means no one can visit her while she and dad get their heads around it all.
I keep going from feeling ok for a few minutes, to having feelings of absolute dread coursing through me.
Thanks again for taking the time to respond so comprehensively.
It’s a week ago since I first posted and my mum got a phone call today for an appointment with oncologist, but it’s not for another week, which will make it 2 weeks from being told she had 3b lung cancer. They said her biopsy results would take a week. I’m worried about the time they are taking considering she first went for an initial X-ray 8 weeks ago. Is this normal? I’m worried that it’s because the biopsy has shown an even worse picture, so they aren’t rushing to treat her.
Hi Sarah, your post sounds a lot like my mum’s current situation. She was diagnosed with lung cancer last month, we’re not sure what stage yet until she has the results from her biopsy but it certainly seems as though it’s advanced and will be treated with chemo / targeted therapy if suitable. She has an appointment with an oncologist in a week and a half which seems so long away. She has recently been very breathless so has spoken to her nurse and has an appt with a consultant tomorrow and an X-ray as they think the tumour may be compressing her airway which is terrifying. As you said, it’s awful not being able to go and see her at the moment, I feel so helpless. I have a 4 and 7 year old who I’ve been trying not to cry in front of. The nurse said they will hopefully be able to give her some radiotherapy to reduce the tumour so she is able to breathe easier so fingers crossed. I hope your mum is doing ok x
So sorry to hear that you are going through the same as me. My mum is having her appointment today so I'm anxiously waiting to hear from her. It feels like things have taken so long for her to be diagnosed from the initial x-ray over 10 weeks ago and I get really frustrated because I keep thinking that they should have been treating it long before now.
How has your mum taken the news? Mine is being very positive, but I know she is very anxious. She's more concerned about her weightloss than anything else right now.
Hi, I hope your mum’s appointment went well. My mum is also waiting for her treatment to begin which they’re saying should be within the next couple of weeks. She’s been quite positive but has had days where she’s been down too. We’re just hoping her biopsy shows that she can have immunotherapy or something similar so fingers crossed. Unfortunately her x-ray showed a mass in her humerus bone this week so it looks as though it has spread. The Dr said that this can be broken up with radiotherapy so I’m still remaining hopeful that it all can be contained once her treatment begins. She has her oncology appt in a week so hopefully things will be a lot clearer then x
Thanks for your reply. I hope you are well. How did your mum’s appointment go? My mum is due to start treatment in a week. She’s having chemo and immunotherapy on a 3 weekly cycle. Today she had to have tests in preparation - a vitamin B injection and some blood tests. The nurse is due to call her on Wednesday to talk her through the treatment and what to expect. Mum hasn’t slept well for a few nights, partly because she’s worrying but also because of sudden rib pain. She rang the nurse because she thought it may be related to the cancer as it’s on same side, but the nurse think is it more like a muscular issue as mum had decided to do some stretches before the pain started. I’m really hoping that’s the case. I saw my mum today, via an open window. She’s not put any weight on and her appetite is still not good - this worries me a lot.
I hope you have had some positive news about your mum’s treatment.
I’m glad to hear that your mum’s treatment is starting soon, it’s good that she’s able to receive immunotherapy also. I’m really hoping my mum will be able to receive this also. She has her first appt with her Oncologist this wed and they’re hoping to start her treatment this week or next.
Unfortunately they’ve discovered that the cancer is also in my mum’s arm but have said that they can break this up with radiotherapy. My mum has lost some weight also but the nurse said that once she starts her treatment her appetite may increase as will her breathlessness.
I’m sure if the nurse thinks your mum’s rib pain is unrelated to the cancer, that’s the case. I know that it’s so easy to worry though.
I’m hoping for some positive news from her Oncologist on wed!
How is your your mum? Have you had any further news about her treatment?
My mum finally began her treatment yesterday. So far she feels fine with no side effects - but I have no idea if that’s normal or even when to expect any side effects. They decided to give her a lower chemo to start along with the immunotherapy and see how that goes. Her next treatment is in three weeks.
I hope your mum has a plan in place now and that you are doing ok?
I’m glad to hear that your mum has started her treatment and is feeling well (I’ve no idea if that’s normal or not Either)! My mum starts her immunotherapy tomorrow so she’s feeling quite nervous but glad that she’s got a plan and not waiting on more test results (at the moment anyway). I’m just hoping that her breathlessness improves as it’s really affecting her sleep and making her feel quite down. I hope
Hi There Leccilates (and others who are going through this)
My mum was diagnosed with stage 3b adenocarcinoma with a hot spot on her 4th spinal vertebrae, in December. I can absolutely identify with your terror, despair and state of inertia. The wait for tests, diagnosis and treatment plans were the worse 8 weeks of our lives. In every single one of your posts I see myself, and the confusion, and questioning that I went through. I posted on here too, looking for hope. Everyone who responded was so kind, and really knew what they were talking about. The sagest pieces of advice and information given was that lung cancer is not the death sentence it once was, do not look at statistics on the internet - they are so out of date and do not reflect the advances in treatment available, and people can live long and well with incurable lung cancer - think of it like a chronic illness, not a death sentence. So I wanted to offer hope. We are now 4 months in since the diagnosis. My mum, who had been asymptomatic - the first sign anything was wrong was when she coughed up blood - is still well and fit, which sounds contrary because she has lung cancer, but she is. She has undergone 4 rounds of triplet therapy, (pemetrexed - chemo drug, cisplatin - Chemo drug and Keytruda- this is an immunotherapy drug). She had a scan after the first 2 rounds which showed a reduction in the tumour on her lung, and that there was some scarring on her 4th vertebrae - which is good. She is now on maintenance therapy - Pemetrexed and Keytruda minus the cisplatin. This could be for the next two years, but we won't really know how it's going until the next scan in a couple of months. I won't say that this is easy, or that going through treatment isn't hard and distressing, for everyone that this affects , but there is every reason to hope that there will be regression, remission or there will be no evidence of disease at the next scan. When you have your plan in place there will be some release of tension, and you can start to look forward. I promise you that although life will never be the same, you can get through this.
Thank you for taking the time to reply and reassure me. I’m sorry your mum is also going through the same, but pleased to see she’s had a positive response - I really hope this continues.
My mum’s treatment starts next week - she will have chemo and immunotherapy at the same time. I wish she could get her appetite back and begin to put some weight on. Trouble is, she was slim before, so any weight loss always shows quickly. I also worry that the weightless means her LC is worse.
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