Lung Cancer Diagnosis

Hi Essex1 and welcome to the Online Community. I'm sorry to read about your Dad's diagnosis. I myself have a different type of cancer but when you hear the "C" word normality stops and anxiety and stress kicks in. Reading that your Dad's still playing golf and eating normally is a great sign and you should take positivity from that.

All of us on these forums agree the endless waiting for tests and results is debilitating but once the results are in the MDT (Multi Discipline Teams) will meet to discuss the treatment plan and things will be much clearer for you all.

I'm sure some of the member of this group will be along soon to reply. Read some of the posts and if you want to ask any questions, just click on reply. We're all here to support each other and you're not alone.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. 

To find more information covering diagnosis and treatments there are pages covering most types of cancers which can be found on our Online Information and Support Section. 

The Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

Sending you welcoming hugs B xx

Hi

Thank you so much for your response.

I am sorry to learn about your diagnosis and wish you the very best.

This forum and website does make you feel not so alone, although we have family etc but sometimes it is good to talk outside of that circle.

Thank you

x 

Hi Essex,

Everyone is different, but hope this might help with a bit of positivity.

I was diagnosed last June aged 46 with NSCLC, primary tumour in my right lung, mets in my liver and 4 vertebrae together with a very small one in my brain, I had a liver biopsy too which wasn’t the most pleasant!!

Straight away I thought the worst, wondering what was going to happen to me and how quickly, it was all very frightening for my family and myself, I had no symptoms, no weight loss and had actually clocked up about 100 miles on my bike a couple of days before my diagnosis. In the beginning the worst part was the waiting between knowing I had cancer and finding out how they would treat it, I completely get what you are saying about analyzing everything, but try not too, a slight cough might just be a seasonal tickle?, a sudden pain may just be a muscle ache etc, I went through all this myself, even I’m sure imagining issues I didn’t have until I had a treatment plan in place. Your dads liver biopsy will be tested to better understand his cancer and ensure he gets the right treatment plan (radiation, chemo, targeted therapy etc), once that’s in place hopefully you will get some comfort. Personally I’m very fortunate as I have the EGFR mutation, this means I am eligible for what is known as a targeted therapy, a once a day pill I have been taken at home for 12 months, it initially shrunk my tumours and has then kept them stable, I’m still doing pretty much everything I used to, running and cycling and if you didn’t know I had lung cancer you’d be none the wiser.

Hope you can get some clarity soon and personally I'd recommend trying to remain as positive as possible, eg if practical and safe etc encourage your dad to get out for a game of golf and try within reason to continue doing what he enjoys as I find that great for my state of mind and my family really benefits form not seeing me as being ill as it were.

All the best to you, your dad and family.

 Steve

Hi Steve,

Thank you for your reply. Sorry to hear about your diagnosis but really great news where you are now.

I think he is fed up now, he’s not sleeping well due to leg pain and I think he’s realised he won’t be able to play golf until the pain is sorted, I’m hoping he can get a cortisol injection so less of the painkillers, so at the moment, he’s tired due to lack of sleep.

Do you know if they automatically test for EGFR? My Dad has a family history of Cancer on his side, his Mum, uncles etc all died of Cancer 10+ years ago. 

Thank you for your positivity and I continue to wish you well.

Lucie x 

Hi Lucie,

In terms of testing they should test for all the common things in order to know what treatment is likely to work best, EGFR+ & ALK+ are two particular mutations that can be initially treated with targeted therapy they usually also test for a few other things including PDL-1 - the level of this can indicate how successful immunotherapy may be, there are a few other things too I'm not so clear on. Tell your dad when he goes for his results (or if you go with him) to ask if they have tested for genetic mutations, which I'm sure they will have. I had so little sleep for a couple of weeks until I started my treatment as I was so worried about the unknown, that and the lack of sleep made my grouchy! You mentioned pains in his legs, I had those too, that was because the cancer in my vertebrae was causing them to swell and press on the sciatic nerve, no amount of pain killer really helped me, your dad may be similar? Hopefully once he gets his treatment plan things will improve.

All the best.

Steve