The Roy Castle Lung Cancer Foundation
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Staying positive

Hi my names jeanette im new to this so im struggling. My mum has stage 4 lung cancer. We so theconsultant last week it has gone to mums adrenal glands, spine, and lymph nodes in chest. Mum starts chemo on monday. Im really really worried about her. I just feel ike im dreaming as mum was ok in march. Dont know what to excpect I keep reading about lung cancer all the time. My partner says I shouldn't.

On mums side we have a lot of breast cancer and I've been advised to have the gene test but at the moment im more worried about mum but staying positive.

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Hi Jeqanette1962,

I am sorry to hear about your mum's diagnosis. I am sure you will receive a lot of support from others in this forum who find themselves in a similar situation.We have a really comprehensive booklet on chemotherpay for lung Available; roycastle.org/system/file_u...

If you would like a hard copy you can order through orders@roycastle.org

Please don't hesitate to contact the Nurse led Helpline on 0800 358 7200 if you feel you need someone to talk to.

Kind regards,

All the Helpline support team.

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Hi Jeanette1962 sorry that your mum is going through this. My mum was also recently diagnosed with stage 4 NSCLC which has gone to her bones, adrenal glands and skin. We had previously been told that all of her cancer had been removed by surgery so it came as a shock. I remember feeling utterly hopeless and devastated when we got the diagnosis and I really struggled with it as well as seeing my mum in pain. I found this site really helpful and got so much support from lots of people! The best advice I got was not to google anything and don't pay any attention to survival rates etc as these are mostly outdated as there have been so many advances in lung cancer treatment in the last few years.

My mum has now had 2 rounds of chemo and to be honest she hasnt found it too bad apart from nausea and acid reflux. Despite these side effects her appetite has returned and she is doing well! She has also had radiotherapy to her spine and hip to ease the pain and it has worked wonders!

Sending best wishes to you and your mum xx

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Hi Jeanette, Sorry to read about your mum. know it can be more frightening to be a bystander in this. Lung cancer is much better understood these days than even a few years ago but has not had the billions of dollars spent on research that say breast cancer has. That's changing now. Greater understanding of the human genome and understanding the biology of some of the tumour types has led to many more treatment options being available than even 5 years ago. Different combinations of treatments are available dependent on the type.

I'd agree with your partner - there is just so much information out there and not all reliable - much outdated and some quackery so if you are tempted, I'd suggest you go to trusted websites such as Roy Castle, CRUK, British lung foundation, Macmillan and european lung foundation (I'm sure there are equivalents if you're not in the UK). Your mum is likely to need you as her daughter, support, friend, not necessarily as a scientific expert or pressuring her with information found on google however well meaning.

If you get chance, why not read 'what can I do to help?' by Deborah Hutton which describes views of patients and carers on what mattered to them at time of diagnosis, treatment and afterwards to see how you can best support her. Most of us just want people to treat us the same as before diagnosis - it's hard to stay strong and not burden loved ones with fear and anxieties and for many the pitying looks are hard to deal with. We are more than our condition - still people after all. I have met patients who have lived for years with Stage iv lung cancer and as new treatments have been developed, taken part in clinical trials that have continued to be effective until more is discovered about the science and outcomes all the time. People less familiar with the condition in recent years are likely to be more negative through lack of knowledge of the progress being made in lung cancer research.

Ask her what she would like you to do for her - it might be practical things like pampering her, reading to her, or similar. Her clinician or cancer nurse specialist are the people to ask the questions of when you have the specific type of tumour (there are different types - so not all stage 4 are the same and not everyone has the same treatment offered as people have very different biomarkers, different health conditions (co-morbidities), different signalling pathways between cells) so treatments now can be very targeted. Lung cancer isn't generally classed as a hereditary cancer - (unlike breast cancer) but often the lifestyle/exposure to substances that may have contributed could be similar.

The shock you describe and feeling surreal is common - even to us patients - for many of us, we were fine (fit and active) one minute and sick the next or so it may appear but it can be developing over time inside us without our knowledge or obvious symptoms.

It's good that you are staying positive - my clinician told me that was the best thing I could do when he told me about my treatment. You'll find support here for you and your mum as well as a helpline (also Macmillan offer a helpline to those affected - not just for patients) if you need to talk to somebody. Clinical nurse specialists are usually very familiar with the 'common concerns' that people raise and can liaise between different departments in the hospital where she's being treated. good luck to you all - we all know it's a scary time so we're thinking of you.

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