Newly diagnosed stage 4 lung cancer

Hi Nanna B

Honestly our situations really are similar aren’t they, it’s uncanny, the only difference is I hate to admit, but I am guilty of being an ex smoker but I gave up over 15 years ago and have suffered no ill effects since. I have however been researching the rheumatoid arthritis connection to lung cancer and the risk is quite high, I’m also on methotrexate which even though it is used in the treatment of some cancers it substantially increases the risk of getting lung cancer with long term use. I’ve been taking it for over 25 years!!
Anyway in other news I have my respiratory team appointment on Monday 27th so I might get some answers and hopefully a treatment plan. I just want them to throw everything they’ve got at me because I am not going down without a fight. My main worry is that I’m pretty sure they noticed the presence of Lymphangitis Carcinomatosis alongside my cancer which in the past has had an extremely poor prognosis (have a look on Google) but I do know treatments have improved greatly so I’m praying I have years rather than months  

I hope you’re coping ok and are managing to sleep at night at least. I’ve been trying to come to terms with my diagnoses but I know as my appointment approaches my anxiety will kick in again. Let me know if you hear anything further and I’ll update here when I know more.

you take care…Jools ️

Just wanted to wish you well Nanna B. I totally understand you not wanting to Google. It can be scary to get information without context. Like you I had to pluck up the courage to join the forum but I’m glad that I have. My husband has lung cancer. I think we’re both still in shock, even though the diagnosis has taken months. We are very lucky to have a great MacMillan nurse and there is a weekly support group at our local hospital for anyone who has experienced cancer. It’s run by a MacMillan volunteer. I didn’t think my husband would engage with it but he has found it so helpful. We both have. I hope there is something similar wherever you are. If there is then do give it a try. Hopefully you will feel more in control when you have a treatment plan. 

Thank you so much. 

Same here.  Always been fit and healthy walking at least 4 miles a day.  I went to the doctors because I felt a bit breathless when walking uphill.  The diagnosis came as a complete shock.  Still waiting to discuss my treatment plan but it all seems so unreal.  

My husband has experienced same (tho at 80 he doesn’t walk 4 miles but was exercising for an hour each morning.  Only symptom was breathless on hills but had 4 liters of fluid drained last week and has stage 4 diagnosis. Hoping for immunology or targeted treatment, seeing oncologist in 10 days.  Huge shock to everyone.  Good luck to everyone.

Hi I had pneumonia in February. After a chest x-ray showed some pleural infusion I had to have it drained from my left lung. A week later the doctor called me on a Saturday morning to tell me there were cancer cells in the fluid. After having a PET and Brain MRI I was told I had Stage 4 lung cancer in the left lung but it had already spread. No cure only treatable. I too was devastated. I eat healthy and didn't feel bad until the pneumonia and pain I was having on my left side around my back. The cancer spread into my bones too. I've always been active and can't sit still. I had my first chemo of 3 consecutive days then on the 4th a shot for the white blood cells. I have constant pain and am fatigued most of the time now. It's hard to accept this and it seems my whole world has turned upside down now. My heart breaks for me and everyone else who has cancer.

Hi Christyrose77

I’m so sorry that you find yourself here. I know how scared you must be and confused as to how you had cancer and had no idea until the pneumonia. 
It’s shocking and frightening but please don’t think that there’s no hope.

Could I just ask, did your oncologist tell you which ‘type’ of lung cancer you have and did he suggest any other treatments for you ?
I was diagnosed in January, My ‘type’ of cancer is adenocarcinoma. This was discovered after a needle biopsy from the lymph nodes in my neck.

I am also stage 4 with spread to my spine  (3 vertebrae) and my lymph nodes, I’m inoperable, incurable but treatable. I was terrified, upset and myself and my husband and children were absolutely devastated so I 100% know how you’re feeling.I had no symptoms except I was a bit wheezy at night for a few months so I went to the doctors. Literally a week later I knew I had cancer and how bad it was.

I asked what type of cancer you have because there are so many treatments that can buy you time if you have the right cancer genes. 
I was found to have an EGFR positive cancer gene and I’ve been put on targeted therapy, daily chemo tablets, Osimertinib and 4 weekly injections, Denosumab, for my bones.

I have now got my head around it, feel absolutely fine, I’m a bit wheezy in the morning and at night, I have a slight back ache but that’s it.

Side effects from the treatment are minimal, I’m on my second cycle and I have high hopes that it could give me years if it works.

Maybe ask more questions of your oncologist as to whether a treatment like this or maybe immunotherapy is suitable for you. I know you can have these after chemo if necessary so it’s worth mentioning.

Please don’t give up, know that we are all here on this forum for you if you need to vent or need any advice and everyone here knows and understand how you feel.

Stay strong.

Sending positive vibes and a big hug for you

take care Jools

I just found out yesterday there's a mass on my spine (MRI) which they think has come from the lung, I've been referred for an urgent CT! All i can think about is my kids...I'm a single parent of a 19 yr old autistic son and an (almost) 18 year old daughter ...they're not ready for the world yet!

II’m so sorry to hear that. It’s all so concerning for all of you. I hope they manage to give you some real and ongoing hope.

With love

Thank you ️