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Original poster

Can anyone tell me about lung cancer?

57 replies

borntohula · 14/09/2020 18:12

Found out recently that dm has it. I know very little about it and don't want to bombard her with questions. She became unwell last year and deteriorated rapidly and can now hardly walk. Diagnosis is very recent. She starts chemo next week. Everything I've read sounds bad. Does anyone have any experience?

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Original poster
borntohula · 14/09/2020 18:25

Bump

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stormy11 · 14/09/2020 18:28

My mum had lung cancer, she passed away nearly a year after diagnosis. I'm really sorry to hear about your mum. What so you want to know? I will try to help.

Batshittery · 14/09/2020 18:29

Hello borntohula I was diagnosed with lung cancer in Dec 2017. Luckily for me, it was caught early and I had surgery to remove part of my lung within a few weeks of diagnosis. I didn't need any chemo or further treatment, so I probably can't help much. It is not always a bad outcome for everyone. Sending you and your mum best wishes Thanks (and bumping the thread)

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Original poster
borntohula · 14/09/2020 18:30

I suppose is the prognosis generally awful? I'm sorry about your DM too. Did it cause her to become practically disabled? I had never associated spine problems with lung cancer.

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Original poster
borntohula · 14/09/2020 18:30

Thank you @Batshittery, I'm glad to hear that you recovered. :)

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MsSweary · 14/09/2020 18:32

ExH had lung cancer and throat cancer dx last year. I think that such alot depends on type, location, stage etc it's hard to comment; he had chemo and radiotherapy and his team hoped that the combination would zap both cancers at the same time, which appears to have worked. He didn't have surgery for the lung cancer as it was small and not fast growing (I don't think).
He was really quite poorly with side effects from the chemo and lost quite a bit of weight but that was partly because the radiotherapy burned his digestive tract and destroyed his taste and saliva buds.

I think it's really down to individual experience and I don't know whether chemo is dosed differently for different people. I'm sure someone who knows more will come and offer something a bit more useful than me OP. I'm sorry about your Mum though; it's such an awful illness but honestly, they can do alot these days.

MsSweary · 14/09/2020 18:34

And, yes, he is discharged now so will have regular follow up appointments for the next 5 years I think. Hope that helps.

Happydaysforever123 · 14/09/2020 18:37

My DH's cousin has has it for about ten years and is still working and seems OK.

Itwasaquarterpast11 · 14/09/2020 18:41

My DM didn't have spinal problems, but the cancer spread to her brain, so the tumour affected her motor skills and speech.
To say she was diagnosed late is unfair, but in her case, by the time she became unwell, the cancer had spread and treatment was of no real use at that point.
Flowers for you and your mum.

Original poster
borntohula · 14/09/2020 18:43

That's quite reassuring. I guess because she can hardly walk I'm assuming it's really awful but like I say, I know so little about it. She stopped smoking a few years ago so it seems especially unfair.

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Original poster
borntohula · 14/09/2020 18:48

@Itwasaquarterpast11 yes, that's what's happened to my mum. I don't feel very positive tbh.

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stormy11 · 14/09/2020 21:10

She struggled to walk due to feeling very weak. She lost a lot of weight. When does your mum start chemo?

Original poster
borntohula · 14/09/2020 21:41

@stormy11 chemo starting next week. She's struggling to move because her motor skills have been affected, we thought it was going to be a neurological thing.

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Lovelydovey · 14/09/2020 21:50

Handholding. My dad was diagnosed with lung cancer in lockdown and has since had one dose of chemo (his next course has been delayed as the chemo caused an abscess in his intestine) though fortunately the tumour (stage 3) hasn’t grown in the interim. He was a smoker for 50 years until diagnosed (the day after he retired no less) so not really a massive surprise that he has it. No idea on prognosis - he refuses to ask and nobody else is allowed to come with him to appointments.

pandafunfactory · 14/09/2020 21:53

Does she have a specialist nurse you can speak to? To be honest, if she is quite unwell and deteriorating it doesn't sound too good. Lung cancer is often late in diagnosis because people don't display symptoms. You really need to speak to her treating team or perhaps her gp?

ComeOnGordon · 14/09/2020 22:01

Lots of things affect the prognosis - what type of lung cancer it is - non small cell (slightly better prognosis) or small cell (more aggressive). What stage is it? If it hasn’t spread anywhere else then the prognosis is generally better. If it can be resected even better.
There will be investigations (like a PET CT probably to see if it’s spread). Other interesting things are whether there’s a genetic mutation within the cells which allows to the doctors to prescribe targeted treatment.

Every lung cancer patient is different but treatment has changed a lot in the last 5 years and there are many people living full lives but with lung cancer.

ComeOnGordon · 14/09/2020 22:02

Has it spread to her bones in her spine or does she have an ongoing neuro problem?

Original poster
borntohula · 14/09/2020 22:08

I'm not even allowed to really see her because she's afraid of coronavirus, understandably, so I will never get the chance to ask any specialist nurses. She hasn't gone into the details really, she wasn't even going to tell me. The pain she's experiencing is due to the cancer, no neuro problem afaik.

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Original poster
borntohula · 14/09/2020 22:09

She's only in her 50s.

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GinWithRosie · 14/09/2020 22:11

It would all depend what stage she's been diagnosed at. My dad was diagnosed with Stage 4 NSCLC and offered only palliative care after diagnosis. It was a shock, as you can imagine. He died 4 months after being diagnosed.

There are no definitive answers on here for you, sadly...each case is unique to the patient. Sending you and your mum healing thoughts though 💖.

Here are some things I wish someone had told me at the time: Speak to the consultant if you are able to and keep up to date with your mum's care plan. Take notes! It's a lot to absorb at the time and you come away an emotional wreck...then promptly forget everything! Also...be your mum's advocate! Speak up for her at every consultation and meeting...we found ourselves quite often being railroaded into situations and decisions that we weren't ready for or didn't fully understand...be the person who says 'stop! We need a minute!' And then ask the questions that you need in order to be able to carry on and make a decision. Record everything!! Use your phone or iPad if it helps. Finally...chase things up...we were way too 'British' and just waited patiently, which in the end led, sadly, to us losing dad sooner than we perhaps would have done. We got an apology...but that will never make up for those months that we lost. So don't leave things...chase them!

Wishing your mum all good things 💖

smartiecake · 14/09/2020 22:12

Doe she have small cell or large cell lung cancer? The prognosis and treatment for the two is quite different.

pandafunfactory · 14/09/2020 22:13

I really think you need to be quite directive with her and say you need to speak to a nurse or doctor. You don't have to discuss what they say with her. You don't have to be there when she's seen. However you do need to know what's happening.

smartiecake · 14/09/2020 22:13

Large cell is non small cell lung cancer. They will have told her what type it is but it can be too much to take in.

Dinosauratemydaffodils · 14/09/2020 22:24

My dad had small cell. They couldn't operate, he had chemo and radiotherapy (including on the brain to prevent spread). He managed just under 3 years from diagnosis but the consultant told me the week he died, she thought he'd be lucky to make six months at their first meeting. Dad went from a fit healthy ex marathon runner to a little old man very fast, lost loads of weight/muscle.

He did well with the first lot of chemo and went into remission. It came back around 3 months before he died, they tried chemo again, he was really ill with it and they said no more treatment. I was there when the consultant told him, pregnant and with my 3 year old. I saw his face and I honestly believe he gave up after he asked if he'd make the 3 months til my baby was due. He never came out of hospital.

Disillusioned11 · 14/09/2020 22:25

These are the things I learnt ..... I’m not a doctor though so this is just through experience (not me)?

Most lung cancer in ex- smokers is small cell lung cancer rather than non-small cell. Both do not have good prognosis, however non small cell is less aggressive than small cell. Lung cancer is one of the least curable cancers mainly because you can be asymptomatic for a long time so it’s not generally caught early. Common signs of lung cancer that has spread are masses on the brain and back pain when it has spread to the spine. Mass on the brain causes fluid and swelling in the brain and it can appear as if the person has suddenly got moderate to severe dementia almost over night. Treatment with high doses of steroids can reduce this really quickly though and the ‘dementia’ like symptom can almost disappear over night. Masses in the spine cause back pain. This can be treated by radiotherapy. Chemotherapy can prolong life but mostly doesn’t cure and the side effects can be fairly brutal. They will injection blood thinners into the stomach because people who have later stage lung cancer die of pulmonary embolism (blood clot from lung that gets into the grain) before they die of lung cancer even with the thinners.
I’m so so sorry and I wish your mum the dry best