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Mum stage 4

Delilah77 profile image
9 Replies

Hi all my mum has been diagnosed with stage 4 nsc and told she has months to live I'm so confused as apart from a small wheeze and very fatigued she seems fine she has been given 1st chemo (of 4) and was poorly but now back to normal.

Is she likely to get worse gradually I'm so confused and have no idea what to expect or even what's going on.

Glen x

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Delilah77 profile image
Delilah77
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9 Replies

Hi Glen

I'm so sorry to hear your news about your Mum, it is overwhelming, especially when the diagnosis is out of the blue, it comes as a real shock.

I can only share my recent experience with you from my own Mum's totally unexpected diagnosis of Small Cell Lung Cancer at the end of September. I was completely floored by it, as she had no symptoms whatsoever, she had merely gone for a routine X-ray and from that was called back for a CT scan.

After further tests SCLC was confirmed and she commenced chemotherapy immediately. Apart from feeling tired, she has coped amazingly well and following a recent CT scan the oncologist was so pleased with the results he decided to end her chemo after 4 cycles, she was originally scheduled to have 6. The results have been a far cry from his initial diagnosis when he advised us that without treatment she had a matter of weeks due to how rapidly SCLC spreads.

However, after seeing the oncologist yesterday, they have now decided to give radiotherapy on the brain and lung and I feel upside down again. They've said it's just as a precaution, but whereas she didn't lose her hair with the chemo, they have said she will lose all of it with the radiotherapy. This has left me feeling a little concerned as I didn't think radiotherapy was as aggressive as the chemo treatment. I suppose I thought the worst was over.

I do know one thing though, the chemotherapy treatment has shrunk the cancer so providing your mum can tolerate it, from my experience with my mum, it has been beneficial and has certainly prolonged her life given the initial diagnosis.

I really hope that the chemo treatment works for your mum with not too many side effects.

It's certainly one hell of a journey, the most important advice I was given was to remain as positive as possible for them.

In my thoughts and prayers.

Jacqui

Sparkym05 profile image
Sparkym05

Glen,

Everyone is different but there is hope. My mother in law was same diagnosis as your mum last July, the tumour was too close to the spine to operate, so a cure is not possible, they began with radio straight away. Imagine a tumour the size of a tennis ball disappearing to virtually nothing 60/70% reduction the oncologist was so pleased he gave us Christmas off from a course of Chemo and we are still no worse following CT scan in January. Prognosis is now anything from months to years, it will come back at some point but you have to put it to the back of your mind try and get on with life and whilst your mum is well make the most of her.

Good luck

Mark

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

HI Glen

So sorry to hear about your Mum and understandable how you must be feeling confused in the shock of it all.

Everyone responds to chemotherapy differently but encouraging that your Mum has responded well after the 1st dose.

This forum is a great way to receive support as you can see in the replies from Jacqui and Mark.

It is good if you talk about it either through the forum, with friends and surround yourself with as much support as you can.

We have a lot of information on our website of living with lung cancer and chemotherapy, you can order these online. roycastle.org

There are also support groups around for patients and their families/friends in the UK. You can find a list of these on our website and the link is:

roycastle.org/how-we-help/s...

We have a free nurse led helpline if you wish to discuss anything on 0333 323 7200

All the best

The Roy Castle Support Team

waterfd profile image
waterfd

So Sorry to here this I lost my wife to this nearly 4 years ago, since then there has been some new treatments available. Has she been tested for mutations, EGFR, ALK, PD-LI markers, there are targeted therapies for these. See this post on here: healthunlocked.com/lungcanc...

and here: pharmaphorum.com/news/nice-...

NICE have just approved a new drug for NSCLC. You need to ask so you can be sure they have done all the tests that are available.

I wish you all the best.

natalie1966 profile image
natalie1966

my mum was diagnosed with lung cancer that metasised to bone , she had no symptoms at all only let pain, she fought it for 17 months but unfortunately passed last july, wishing u all the luck, be strong for you and your mum and see if there are any trials etc but sometimes you need to make the best of the time you have together .

Delilah77 profile image
Delilah77

Thank you all so much for taking the time to reply it's very much appreciated x

Bow-19 profile image
Bow-19

I agree with waterfd do ask about mutations and make sure that your mum has been tested for these. It could radically change the course of her treatment and they don't seem to always be tested for.

Wishing you and your mum all the best Xx

jonnyd01 profile image
jonnyd01

Sadly, i lost my 45 yr old wife to this 22 months ago after a short 13 week fight.....never give up .....i know its a whirlwind of drs,hospital and treatment and you don't have time to think.....but please try and enjoy every moment with your mum....on here you are not alone.... huge best wishes to you both xx

So sorry to hear your news Glen. Stay positive my dad was diagnosed 4 years 7 months ago with stage 4 nsc too... over this time he's responded well to chemo and radiotherapy and it's shrunk his tumour each time. We're just about to start that process again and we are hoping that it will work again. They didn't think they'd see my dad after 6 months on first diagnosis but he's still here and doing ok. It is a battle and there are tough days but keep your mums spirt up and positive as much as you can as this helped us lots too. Good luck.. she can fight it too x

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