My mum had her PET scan on Monday and the lung cancer nurse rang yesterday to say that it's 'inoperable', basically explaining that it's attached to 'central nodules' (in other words, they can't remove the whole thing). They said she can have chemo, but to be honest she is quite anti-chemo as she doesn't want to be made ill when the prognosis is so poor anyway.
Any advice - for or against - would be really welcome. I am happy to go with what my mum wants, but I need to know whether she could even withstand chemo before we totally rule it out. She is deteriorating daily, and continues to lose weight rapidly. I'm in that 'unreal' place - you know the one where it happens to everyone else and your heart goes out to them, and suddenly it's happening to your mum....?
Swinging between numb and heartbroken, coping and falling apart. So lucky to have a wonderfully supportive husband and work colleagues who have been amazing.
Your experiences please...
H x
FormerMember
Hi hanabana,
I can empathise with your shock and reaction to your mums recent diagnosis.My daughter and I went though this in April 2006. Inoperable and anything from months to a year I was told. I did have chemo, then rt and although it wasnt completely succesful it carried me through until June of this year when the tumour increased in size. Just at that time a clinical trial for the new drugs Tarceva and Sunitinib, became available and I was asked to partake in them .They target lung cancer in a different way. they are called growth inhibitors and theres plenty of info on sites like this. Since then my latest scan showed that the tumour has stabilised and there may even be a minute shrinkage. I am 70 now and my daily life is great, i collect my 6yr old grandson from school everyday, have him during the school holidays and life with him is joyous. Please pursue all the options available to your mum, at a time like this we have to be more pushy than normal.
My mom did not have chemo for hers. There is a valid argument not to have chemo as it can make you really, really ill and deteriorate so that the "quality of life" you have isn't worth the extension. This is a real issue. What your Mom needs to look at is what she wants. If she is already deteriorating quickly, chances are the chemo is only going to make it worse for her. It is a very, very tough situation. I will tell you though, that when my mom said "no", I cried and cried. But I had made up my mind that I would do whatever I had to to support her in her decisions and I did. I asked her what she wanted and then I made damn sure she had it. She told me she wanted lots of drugs and lots of oxygen. I never waited for her to ask in the end. I set my timer and gave it to her, her morphine drops every 4 hours. She went peacefully and graciously. It was her journey and I felt it was a gift that I was able to help her on that journey, but the truth is it was a gift to me. I was incredibly honored, but make no mistake, I had to reconcile in my mind and my heart that she was done. I would talk your mom through it a bit and make sure she has thought of it thoroughly. Not challenging her, but "Mom, help me understand your decision..." If you are satisfied that she is making a decision that is right for her, then help her. You shouldn't force her to do something she doesn't want too. I hope I've helped. I've been there and its really rough. Do what you can to get your head around it so you can be there for her fully.
I agree with Lori above, as I didn't feel too bad at all before chemo, but it felt The End as soon as I started it. It took me months to recover from it - I am terminal, so I too turned down another lot of chemo, and have actually survived much longer than the doctors predicted and also HAD QUALITY OF LIFE. As Lori says, pain management is important. Hopefully your Mum will have this sorted. I would certainly go for whatever is necessary for the level she requires - I know my partner's sister was absolutely against her husband having morphia through some silly prejudice about the drug. Please keep us posted of how your Mum is doing, and please give her a hug from me if she wouldn't mind this, Lots of love xxxx Penny
I can't add to Lori's advice. Make sure your mother has thought it through. A lot of hospices and many hospitals have continuous, or painkillers at will arrangements, where you just press the button and you get the painkiller. These drugs aren't addictive if they are being used to kill pain. You can't have too much because of the way the system works, and they would explain this.
A prognosis is just a guess based on experience. Just because it is inoperable, it doesn't mean it is untreatable. You need to talk to her Oncologist. They won't treat her if she is too ill to withstand treatment. Chemo is pretty awful at the best of times, though mine wasn't too bad. Certainly not as bad as I thought it would be. It is up to her in the long run, but as others would tell you, if she is up to it, it would be worth the sickness to be put into remission. Only the oncologist could tell her how successful the treatment could be for someone in her position. They won't give guarantees, but there are people on this board who have recovered from Lung cancer.
Life can be beautiful after lung cancer, even if it doesn't last all that long.
I'd say, get the facts, and see how she feels about it.
I am so grateful for everything that each of you has said - particularly with regard to seeing the oncologist and also accepting what my mum wants at the end of the day. We've always - thankfully - had a 'live for the moment' approach to life, it's how my mum raised me. It was funny when I said to her yesterday 'is there anywhere you want to go?' - She replied 'I've been everywhere' and she literally has from Africa to China to Morocco, the Cayman Islands, Mauritius and the Maldives. So I said 'Is there anything you'd really like to do while you're not too ill?' And, she said 'I've done everything I wanted to do. I wanted to see my children grow up (and I'm her 'baby' at 41) - and I've done that.'
She has told her friends that she's fought accepting her disability for 11 years and she's worn out. I was worried that although I do all the practical things for her - cooking, washing, showering and we watch our many and varied TV shows together - I don't spend enough 'quality' time, like taking her out and stuff.
She said to me yesterday - 'Every minute I spend with you is quality time.' She's just so special and I'm having such a rollercoaster ride of ups and downs at the moment, but I will come back to this site - your advice and words or encouragement are so comforting.
