Mum diagnosed with stage 4 lung cancer which has spread to pleura

Hi All,

Today I have found out my mums lung cancer has returned after 3 years of having a right lobectomy, with no follow up.

She had an X-ray last September due to pain which she was told she had pleurisy. She then attended her routine cancer check up and was told no changes.

In January she was unwell and treated for chest infection with antibiotics, had 2 courses. Felt better in Feb but then in March very breathless. Went to respiratory nurse who referred to GP and she was started on steroid inhaler. Still no better and a month later mum went back to GP and he sent for XRay, end of April.

GP got results and referred mum under 2 week rule to respiratory clinc.

CT scan showed thickening of pleura and a pulmonary embolism. Treated with Clexane at present.

Had biopsy done last Wednesday and she has appt on Friday to be told results. I was told them today as I had got my mums respiratory doctor to refer my mum to a professor in Liverpool whom has been excellent. He emailed today and I called him.

He ordered tests from my mums previous tumour that was removed for genetic mutation testing, still waiting these results.

So here we are on the journey again, but this time stage 4 as last time it was stage 1b.

I find it hard to believe there was nothing on the X-rays in September or why didn't the GP do an X-ray in January when she was very unwell.

Treatment option is chemotherapy, not sure what type yet until we go and see oncologist on 10 June.

My mum doesn't know her results yet, though I know she suspects the cancer has returned. I will be with her this Friday when they tell her.

Has anybody on here had chemo for stage 4 lung cancer? How long is treatment for?

I lost my dad when he was 58 to lung cancer, my mum is 72 and due to get married to her partner of 30 years in October.

Thinking of all of you on this journey.

Wendy x

16 Replies

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  • Wendy, so sorry to hear your sad news. My husband as advanced Lung cancer which has spread to his liver and spine.

    We saw the Oncologist this morning, hoping he would be able to have Gene Therapy. Sadly he didn't have the gene mutation.

    He was told he has 6 months to live. Chemo might give him a further 3 months but he is likely to be put at risk by the side effects, one of which is blood clots.

    As he has two aneurysms and it is too dangerous to operate on them, blood clots would be an added risk. He has decided to opt for quality of life instead.

    Everyone is different, so it really is entirely up to you and your Mum, to decide what would be best for her individually.

    In our case, my husband does not feel ill. He has a cough and gets very tired. We are doing our best to carry on as normal, once all the form filling is done.

    I wish you well Wendy.

    Best wishes

    Azure Sky xxx

  • Hi Azure Sky,

    Sorry to hear about your husband too. I have been following your journey on here for a while and can empathise with you.

    My mum actually feels quite well too. Her symptoms are breathlessness on minimal exertion and increased phlegm but no cough. Slight pain in ribs but bearable.

    I've just spoken to her now and am trying to prepare her for the results on Friday, that I already know.

    My mum lives 250 miles away from me but I have been travelling up every week to attend her appointments with her. It's the least I can do. She has comfort and trust in me, I'm a nurse myself but when it's your own family it's different.

    I truly wish you and your husband and family all the very best. Is your husband not having any treatment?

    Since my mums XRay results I have encouraged her to change her diet, lots of fruit and veg and no sugar or processed foods. May not help but if she has chemo she needs to have get immune system as strong as possible.

    I've read lots on Vitamin C supplements in high doses, not sure of the benefits but I'm looking at all options right now.

    Thank you again for your reply. It is comforting to know we are not alone on our journey with our loved ones

    Xx

  • Hi Wendy,

    My husband had a bronchoscopy to have samples taken.Following the Ultrasound and CT scan. The results took a week He doesn't have the Gene mutation unfortunately, There is a drug which can be taken orally if the gene mutation is present.

    Richard has decided not to have chemo, it is too risky for him. He has an aneurysm 7mm. The chemo has a risk of blood clots, sore mouth and throat, nausea, weakness and would affect the aneurysm.

    The Oncologist was very truthful in telling him the side effects and risks. For the sake of three months, Richard felt he would rather have a possible six months, than 9 months with chemo. He made this decision entirely by himself.

  • I don't have any direct experience but just wanted to say how sorry I am that your mum has this. It must be a very confusing and worrying time for both of you. I offer my good wishes.

  • Hello Wendy, Sorry to hear the sad news about your mum. I am the same age as your mum & I had a right upper lobectomy in January 2013. Idon't have experience of chemo I am afraid but I know others on the site have. Love to you & your mum. x

  • Hello. I am so sorry about your mum. This must be an awful time for you. I don't have any good advice but sending you my love.

    Cas xx 🌿

  • So sorry to hear about your Mum. She will feel so much stronger going through all this with you by her side. My. thoughts and prayers are for you both and the rest of your family

  • So sorry to hear about your mum.hope they can give her treatment that will help.Thinking of you both at this worrying time.x

  • Very sad to read your post - how dreadful for your Mum. The positives are she seems to have a good consultant and action is now being taken. You are a very good daughter and she must be very pleased that she has you to support her. Sending you both lots of love xxxx

  • So sorry to hear about your mum - hopefully now she will get the treatment she needs and have many more good years with her partner, soon to be husband. Sending prayers and best wishes xx

  • Hi, I'm so very sorry to hear about your Mum. Mine sadly passed away just over a year ago, from lung cancer. The lung tumour had attached to the artery leading from her heart.

    She had (if I remember correctly) two weeks of chemo, then a week off. This was supposed to happen four times.

    Sadly Mum had suffered from nose bleeds towards the end of treatment, due to the chemo lowering her platelets, white cells and generally flattening her bone marrow. She was due to start her radiotherapy soon and was on her last fortnight.

    After blood tests, prior to chemo I was phoned and told that's she needed a repeat at the hospital before chemo as her leukocyte count was 1.3 and that it would have to be higher for them to proceed.

    I'd taken Mum for every appointment but on that occasion I had one myself so my brother took her.

    If told him what they said but even though the count had dropped to 1.0 they still went ahead, after phoning the Consultant.

    Three days later Mum started bleeding from what appeared to be everywhere and was rushed in to resus. Although stabilised, she sadly passed away 6 days later from Pnemonia.

    I wonder if they'd not gone ahead if things would have been different but will really never know.

    Every case is different though and I pray that your Mum comes though this.

    Thoughts and prayers to you both. X

  • Thank you to everybody who has replied. I find it helps sharing our journey's together.

    I am driving to mum's shortly, hopefully the motorways are clear, so I am with her tomorrow when she is given results at her hospital appointment, then I will spend the weekend with her, hopefully weather is nice so we can get out and about! x

  • Just like to add my very best wishes to your mum, Wendy, and you of course. It does seem frightening that nothing was picked up on her recent X-rays...worrying too.

    I hope that whatever treatment she is offered means she has a wonderful wedding and fingers crossed for her.

    Tee x

  • Hello Wendy, I'm a bit late but wanted to say that I'm sorry about your Mum. It's difficult to give the answers you're looking for because the type of chemo will depend on the type of cancer, and in turn the side-effects will depend on the type of chemo.

    It will be a difficult visit tomorrow but hopefully your questions will be answered, and you'll have the weekend to be with her and support her.

    Thinking of your Mum and you, Sue xx

  • Hi Wendy,

    So sorry and sad to hear your news. I was diagnosed 31st March 2015 with stage four lung cancer. I had five sessions of chemo last year two weeks then a week off. It was partial remission. Didn't have too many side effects. I have it in both lungs. One responded the other cancer kept growing slowly.

    Since January I have been on chemo and a trial drug six weeks on one week off.

    Had two contrast scans which have shown shrinkage, both lungs and no growth.Waiting for transport for a scan today. Hope it is still going my way. If growth off trial

    The side effects have been greater, lost hair, eyebrows and eyelashes. Was losing weight but have actually gained some now. Very few pains but have a dry irratating cough.

    It is a very personal decision whether to have chemo, treatment etc, but for me I know I made the right choice.

    Discuss it fully with your medical team and ask questions.

    Good luck today. In my thoughts and prayers.

    I'm 74 years old.

    Suzyxxx

  • Sending loving thoughts and prayers to you. I hope you continue to improve xxx

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