Dad has stage 4

Hi, 

Sorry you find yourself in this group. 

Unfortunately, it's a waiting game for so many of us. We are just numbers to them, so they don't see us with family and a life.  I thought I was going mad throughout March, depression, anxiety, put on medication,  and just constantly told to stay positive. and another month of waiting to see an ongologist and to start treatment was the darkest part of my life. To finally see him and be told treatment would start in another month !!! So l left his office in bits , believing my cancer will spread , if it hasn't already . Get checked out they keep telling us , erm to be stuck on a waiting list , shocking. I did start treatment a wk later , so not sure why he said a mth.

Life I guess will never be the same for us , i lost my mum to lung cancer and sister to bowel within 6 mths of each other . PALS  maybe the first call for your concerns , I queried this waiting time , 62 days from referral to start treatment,  90 + days for me . 

You like many others here are in my thoughts and prayers .xx

Hi 

Thank you for your message it is appreciated. I'm sorry to hear of your experience with your diagnosis and the waiting times. I'm glad to hear you've started treatment and wishing you good luck it helps you. I appreciate all the worry and anxiety it causes. It's the unknown and feeling like you're in the dark. We're having to wait to see oncologist with so many questions. I really hope my dad can have some form of treatment along with the radiotherapy. 

Thanks yes I'm aware of PALS. 

Sending you good wishes and some comfort in your journey  xx

Sorry I had also intended to add I'm so sorry to hear about your mum and sister. That must have been so hard for you. My mum had many health probs and I'm worried about both of them. It all teaches us even more I think how precious life is and to grab all the good moments and make the best out of what we have and time we all have xx

Thankyou ️Yes this is so true , we take life for granted , until we hit a bump in the road, somehow we learn to deal with these bumps , as hard as it is .

I'm sure they will have a treatment plan for your dad , they have come such along way with lung cancer . As much as it's hard too , but try and stay positive, we all need to grab and hold onto our memories,  none of us know whats around the corner . xx

Yes you're right it all somehow snaps us into reality. I've always valued life but something like this emphasises it more for others and ourselves.

Thank you about my dad. As it was decided for him to not have an operation or needle biopsy due to his overall health, family are saying he shouldn't have any invasive treatments as they all have bad side effects and it would make the quality if his life worse compared to just treating the pain and help shrink tumors with radiotherapy. I completely appreciate it's my dad's decision but I can't help think there may not be a beneficial treatment for him I.e. if side effects outweigh benefits. We'll see what oncologist sais  

Pease let us know how you're getting on with your treatment. I hope it helps and provides some relief for you and side effects are tolerable.

I find music helps through times of anxiety. Watching clouds and birds soaring xx

Hopefully , they will keep him pain free and comfortable,but 100% sounds like he has the most important treatment around him , the love from you and family. I will let you know how my treatment goes,  ive a long road ahead xx

Hi Jnet

It was the same for me, from referral to starting treatment was 96 days, although during that time I had chest X-ray, full lung function tests, CT scan with contrast, PET scan, CT guided needle biopsy, and various blood tests etc. It was a relief when I finally began my treatment.

This was in late August 2023, and after radiotherapy (SABR) alone treatment everything is looking positive going forward.

Best wishes.

Yes all my tests were completed in January , just a brain scan February, then waited 5 weeks for an appointment with the ongologist,  in which he told me my treatment plan , but went on to say I'll start in 1 month , I really believed he'd just signed my death certificate,  I was in bits leaving his office. 3 days later tho hospital rang to start treatment. I did complain to PALS whilst waiting, so it's on record . Glad to hear your doing well xx

I'm so sorry to hear about your dad, I really hope they can choose a treatment for him that won't be too hefty on the side effects and will help.

I'd definitely also advise PALS, and having a read of the NICE guidelines for diagnosis and treatment of lung cancer - also not sure where the too small to treat comes from, my granddad's is 1x1.3cm and they have started treatment with radiotherapy!

Katie x

Thanks for your message and information. Sorry to hear of your grandad, I hope his treatment goes well. Would you mind me asking if he is in good health otherwise and no breathing difficulties? Also if he's young / middle aged / older? I've read treatment should be based on overall health and not age, I'm just trying to understand the decisions made by my dads medical team even though there's no excuse.

Yes I don't understand the size thing. We were told in September it had grown to 1cm (doubled from August as was 0.5) and recently said they don't do treatment for 1cm or less even though it was "suspected cancer" which they didn't tell us in Sept! Its now 2cm in March scan. You would think knowing it had doubled size in Sept they wouldn't wait 6 months to do another scan. I think it's disgraceful x