Life expectancy- stage 4 lung cancer experience

Thank you for your replies.

I used this forum to try and predict Mums life expectancy and reading through the posts really helped, so I knew I had to write my own experience on here.

Mum was diagnosed with stage 4 lung cancer on 13th June and died on August 15th. We did not find out what type of cancer it was as she had COPD, asthma, angina and it just wasn’t worth it. When we found out she didn’t seem hugely different than the other times she had been in hospital and the cancer was missed on so many previous scans, it was right by her heart and she always had chest infections so they assumed it was always that causing the dark blur. 

She was great, had to be on oxygen 24/7 and we wouldn’t leave her side but overall, herself! but then went into hospital as her sodium was low and caught shingles. I don’t think this had much of an effect on her timeline to be honest. About 10 days before she passed, she was more tired and confused. She then went to sleep and barely spoke from the Friday, she died on the Wednesday. The Tuesday before we washed her and she was lifeless. We stopped all medication and took her off her mask around the Saturday because she just couldn’t swallow. Signs to watch out for are confusion, being unable to swallow, becoming more tired and towards the end - the white fingertips. Everyone’s experience is different but Mums last 2.5 weeks were when she started getting confused and it went downhill from there.

She died peacefully cuddled up to me and my sister and I’m forever thankful for that. I think the anxiety of her passing at the wrong moment, without us, was the worst. 

I wish I followed my gut and left work sooner (I worked mornings up until the Friday before).

Mum wanted to celebrate Christmas early and although it was originally arranged for 11th August, we luckily moved it to the 15th July. It was great, she actually went 3 hours without oxygen (we didn’t realise!) and stayed out until 11pm. We are so lucky to of had that day, so many came and Mum was showed how loved she was whilst she was still here. I’d advise anyone to do this - build a memory that shows them going out with a bang. 

She lived with me during the last moments and my biggest regret is that I was too strong, sometimes I wish I cried my heart out and told her how scared I was to live without her. I wish she heard that from me but I know she knew deep down.

We’re lucky Mum was the strong little soul she was but I suppose that makes it so much harder without her.

The primrose nurses were the best people to get advice from, better than the doctors. Make sure everything is done how you want, you know them better than anyone else!

 

Hope this helps someone and feel free to ask questions. This forum helped me so much! Xx

Parents
  • Hi,

     

    first of all all I am so sorry for the loss of your mum. I also lost mine September past to a stroke. Very fast and unexpected, broke me into a million pieces. You should be so proud of everything you did and how special you made her last days here. 

     

    So im a bit scared and confused. My granda has just been diagnosed with lung cancer 3 weeks ago. He’s had his scans and CT and a bone scan. The tumor is 8cm at the bottom of his left lung, and has spread to the lymph nodes only on the left side mainly by his collar bone. There is potential it’s already gone to his adrenal gland but any and all spreading is so far confined to the left side. Bone scan came back all clear. Here is where the confusion begins, he is 78 and has a long list of health conditions so a biopsy is out of the question as is any kind of treatment. We haven’t been told a stage or anything at all to be honest. They just don’t know and have no way of finding out. Has anyone ever been in this situation and what was the outcome? I just want to know how long I have left with him. He’s my everything. I don’t have a dad and never did, he is the only dad iv ever known. 

     

    It started with pain in the shoulder 3 weeks ago to which we got him seen and they found the tumor. The hospice nurses are now involved in his care and have started him on some pretty heavy medication which had to be increased the next week. So he’s on 10mg morphine tablets twice a day and he takes oxycodne liquid as and when he needs it for his breathing. 

     

    This is where I need advice the most. He’s gone downhill so fast. The nurses say it’s the meds but I don’t know I’m scared. Before this he walked with a walking stick and could easily move around for a short period of time and could always do everything for himself like going to bed, the toilet, shower etc. Since he’s been on the new meds and we got the diagnoses he can’t even get out of his recliner chair by himself or even reposition himself. He can’t walk without someone holding him at all, not even 2 steps. This is so scary and he has detoriated so so fast with his movement and breathing. Is this normal on these meds?? 

     

    Please someone help, I’m so scared

  • Another note to mention, he’s been having a lot of falls at night time. A lot of confusion as to where he is when he wakes up in the night and he just gets out of bed and tried to get up and dressed or sometimes goes to the toilet and will fall over. 

Reply Children
  • Dear friends, this has been a lovely thread and so honest but I just wanted to say my husband was diagnosed 4 years ago this month and is still here.  Stage 4 lung cancer from the diagnosis we were given 7% survival rate but Norman took every bit of treatment they offered, January last year liver mets were diagnosed and in his stomach wall the doctor patted me on the shoulder and said how sorry he was.  Our Oncologist had other plans though and offered immunotherapy and apart from lockdown we have had a year free of infections, pneumonia and all the other illness associated with lung cancer, they have promised him one more year but he celebrates his 75th birthday in four days time so please don't all despair the minute you hear stage 4 lung cancer, everyone is different so have some hope and don't despair.  Much love to you all and my heart goes out to those of you who have lost loved ones.  Carol xx

  • I am joining Carol's husband.I was diagnosed with mets in my lungs and liver in 2019 and after chemotherapy still there and good.Although after missed diagnosis I was diagnosed in October 2020 mets in my brain and I am still alive and going back to work hopefully in April after the vaccine.I am 43 but planning to change hospital for more and better treatment. 

    So just fight for your treatment and ask questions because I gave up in 2019 but people here gave me strength and power.So whatever the onco tell about the time scale don't listen to her she is reading only from the computer. 

    Denise

  • Well said Denise, I wish you all the good luck you deserve in your brave fight.  Carol x