Heartbroken - Dad diagnosed stage IV

Hello everyone,

It's taken me a few days to get round to posting this, because what I'm about to say is painful even to type out. It's still so hard to believe that this is really happening. I keep thinking I'm going to wake up any minute and the bad dream will be over.

My beloved Dad, Jack, aged 65, was diagnosed a few days ago with stage IV adenocarcinoma. There's a large tumour in his right lung, another large one in his chest cavity, it's spread to his ribs and eaten away part of his breastbone, and lesions to his abdomen. The docs have said maybe a year without treatment and 18 months to two years with treatment.

We are a small family, just me, my Mam and Dad, and we've always been very close and still are. My Dad has always been a central part of my life. Nearly all of my most important memories, from childhood to the present day, involve him in some way, and I have a million of them. He's always been my hero. I love him beyond the power of words to describe, and the thought of him not being there anymore is too horrible to contemplate. Yet it's a reality I must soon face, far, far, far too soon.

To say I'm devastated doesn't even begin to scratch the surface of how I feel. Anger, grief, shock, terror - these are words to label some of the emotions flying around in my head, but to be honest the pain is just beyond all description.

I also can't get out of my head the thought that this outcome was avoidable. If only the cancer had been spotted sooner. He's been under the doctor for chest pain since January. To be fair, the doc did send him for a chest X-ray right at the beginning, which showed nothing, so it was assumed it couldn't be cancer and the chest pain was diagnosed as costochondritis. The doc then proceeded to treat him for a condition he didn't have for the next ten months, while meanwhile this monster was growing and growing inside him until it was too late to do anything much. It's now thought that the initial lung tumour was missed by the X-ray because it was hidden behind the heart. I know that 'if only' won't change anything now, and we'll never really know what the outcome would have been even if this had been diagnosed back in the spring, as I think he's probably had it for a couple of years or so, and it may have been too advanced to cure even back then. But I can't help feeling so angry and bitter that it wasn't spotted soon enough to give him at least a fighting chance of beating it.

I've been lurking around this site for a few days and I've found at least a little comfort and inspiration from reading some of the posts here. I have some wonderful and very supportive friends, but none of them can really understand what we're going through. So I thought I'd post here and maybe talk to some of the only people who can really understand, people who are going through or have gone through this nightmare themselves.

Would be very grateful for any responses.

Bless you all.

Paul

Edited December 26, 2009 at 8:33 am

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Thanks again. It's now six days gone since diagnosis and I still haven't really managed to wrap my mind around it. I keep thinking that somehow everything's going to be OK. I'm also finding that I'm almost afraid to sleep at night, because every day that passes is one day less we have with Dad.....I know that's silly as none of us can pause time, but I imagine others have felt the same way.

Thinking of you all.

Bless you,

Paul

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We understand your pain. My mom was diagnosed with stage iv in sept. We too are a small family in a lot of ways..just mom sis and I. The shock has worn off somewhat but the pain and anger are still looming large. The doctor gave mom 6 months with no treatment maybe a year with treatment but I keep reading about stage iv survivors who are in remission so I'm trying to not lose all hope while still trying to prepare myself. There are so many helpful discussions on this site. Just connecting with others who truly understand what you're going through has been comforting. Keep your chin up, both your parents are gonna need you.

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Hi Paul,

I am in the same boat as you. My dad is 64. He will turn 65 on January 1st, 2010. I am also an only child. He was diagnosed with stage IV non small cell lung cancer in October. It has spread to other parts of his body (his brain, his ribs, lymph nodes, liver, hip). I can understand when you ask if this could have been prevented. And again, by the time we found out, the cancer had gone on a warpath in his body. So far, he has received radiation to the brain. He has gained enough weight to receive chemotherapy. I am hoping this will help him. It is tough to sit and ponder the unknown as he gets weaker. There was a point where he was getting stronger and when he got stronger, I also felt stronger. But now I can see he is more tired. I am hoping chemotherapy will help him. I feel the chemotherapy and a positive attitude is all we have to fight the cancer.

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Hello again,

Grateful thanks to all who replied, for your kind words and your thoughts and prayers. Every one of you is suffering or has suffered as much as we are, and yet you’ve taken the time to try to help me. I feel humbled and very grateful for that.

You’re right – it’s no good focusing on what could have been, as the time to catch this thing early was probably several years ago, and there were no symptoms to warn us back then. But all three of us will definitely be changing doctors!

My Dad has already said to me, he isn’t going down without a fight. I believe him. He isn’t the kind of guy to give up quietly. Maybe it hasn’t sunk in properly for him yet (it hasn’t really for us, either), but at the moment he seems more worried about the effect it will have on me and my Mam, than about himself. He wants us to try to go on as normally as possible, to do the things we’ve always done and talk about the things we’ve always talked about. I’m trying to do that, and when I need to have a good weep (which is several times a day), I try not to let him see me, because it hurts him to see me in so much pain. I have to be strong for him, and for my Mam. I don’t know how I’m going to do it, but I know I have to do it.

I know God has a plan, and God’s will shall be done. Between the time we got the first hint of what was wrong (8th December) and the formal diagnosis (22nd December), I prayed and prayed, please God, don’t let him have it, or failing that, at least let it be curable. God didn’t give me what I asked for – again, His will. But even though I understand that, it does make me feel at times that praying is no use, because God is going to carry out His plan no matter how much I plead with Him to change it. (I’m still praying, though).

I’ve already come across some of the posts here from people who’ve had similar diagnoses to my Dad, and given similar timeframes, and gone on to live years longer than they were originally given. That does give me a little ray of hope, but in my Dad’s case I daren’t hope for that too much in case I’m setting myself up for a big fall.

As you’ve said, the only thing we can do now is try to make the best of the time we have left, however long or short that may be. And I am grateful that at least I’ve been given time to talk to him, tell him the things I want to tell him, and make sure there aren’t any regrets later.

I will say one thing – this experience has changed me. Before, I was worried about my career, finances, having fun, etc. I can’t believe I was so stupid. Now I know that people, especially family, are ALL that matter. I’ll never worry about the trivial things in life again.

I’ll be thinking of and praying for you all. Thanks again and God bless you.

Paul

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Paul,
I am a almost two year survivor (Dx March 08 with stage IV adenocarcinoma).

This site is the best info out there.

When everyone says to find an Oncologist, listen to them! I never believed I would still be around to hand out advice based on what I was told at the beginning. Having an Oncologist that Specializes in treatment of LC can add months and even years.

Listen to your dad and remember to consider his wants and desires also.
R

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Paul, please be positive and give lots of love and encouragement to your dad. It is possible to beat this disease. Living with it or eradicating it, either way means you can keep your dad for a long, long time. Don't give up and don't let him give up. Many folks on this site are living proof that our diagnosis of lung cancer doesn't mean we cannot beat the odds. God gives us strength, and the doctors treat the disease with all kinds of meds and no doctor can say for sure that a certain time will be all one can live. You keep on loving and supporting your dad with all you can give and enjoy every moment you can share. Love and prayers for you both. Judy

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Hi Paul,

I found this website under the same exact circumstances. My dad was diagnosed in 5/09 Stage IV. It has been a roller coaster ride since. When I found out, all I did was cry, cry, and cry some more. This website really helped me get through it, and still does. You will read some amazing survival stories, meet people who have been thru it and others who are going thru it. Whenever you have questions, feelings, anything... just post it... and watch how uplifting the people on this site are. Good luck with your dad. Stay strong and positive.

Yvonne

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hey Paul,
welcome, and I'm sorry you had to find us.
I know you need something to focus on right now - and I need to shift your focus - right now. a lot of really smart scientists believe that by the time lc is discovered it's been in there growing for years - like 7-10 of them. it is ultra rare for it to be discovered early in the disease process. and they metastasize pretty early. so...being honked off at the doctor really won't get you too much right now - but I would definitely give some thought to getting a new one, as you'll probably never believe much he says ever again...
now, for the focus part - I want you to take a little while and think about something. way back when, I always thought it would be a great gift to have my loved ones just pass suddenly (preferably in their sleep). God decided that a better gift was to give me precious time with my daddy. my daddy's sclc was discovered late - his mets were active - but we got 5 months and 1 day after his diagnosis - and he didn't suffer but a little (maybe 2-3 days total). we laughed, loved, shared, and sat together every one of those days. I went to every one of his appointments and treatments. I need you to hear me clearly right now - you are one of the luckiest people in the world right now - you have your daddy with you. you need to get over being miserable and focus on being so very lucky. and get over there and give him a hug.

next - since your daddy has probably had this for a while, he is already a long-term survivor. you need to work with him and his doctors to make him a longer-term survivor. to do this, you need to help him get through treatments, side effects and flat out being scared. and you need to remind him that he's had this for a while and there's no reason why he shouldn't keep it up.

last - read posts here from real long term survivors. look up a gentleman named Chum - he just celebrated 5 years of being NED (no evidence of disease). there are many more examples. your daddy needs these good examples.

and ... take care of yourself and your mom...

hugs, new brother,
Pat

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Paul,

I am so sorry about your dad. I totally understand what you are feeling, since my mother was just diagnosed in April. She is so much like your dad in that she is the center of our family. I will be lost without her.

Don't beat yourself up over not finding it sooner. That is kind of the nature of this beast. It doesn't have a preventative test recommended like a breast cancer or gyn cancer. Also, I have read that once there are symptoms showing, it's generally far along, so he has probably had it for a while now. It's hard though. I look back and beat myself up over my mom's situation too, but you can't do that. It won't help anything and will only make you feel worse.

Don't give up yet. There are people on this site with stage IV who have lived many years, so try your best to have you and your dad get a fighting spirit.

I cried daily for probably two months after mom was diagnosed. Finally I decided that she wasn't gone yet, so I was going to try and enjoy each day with her that I could and try not to be as negative. I will fall apart later. The plan doesn't always work, but maybe a concerted effort to be positive the time she is here has helped a lot. It's a tough mental battle though.

I hope he does well with treatment. I wish you both luck. I know it's terrible pain, but we understand here, so write anytime.

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Hi Paul

I was where you are now in August. My mom was dx with stage IV squamous in August. It is absolutely devastating. I try to take one day at a time but that is so much easier said than done. She started treatment but ended up getting esophagitis and then a c-diff infection. It is a very bumpy road but this site and the wonderful people on it have helped me tremedously. It is so not fair that so many people have to go through this. I will be praying for you and your family.

Char

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I'm so sorry to hear. If anyone can give you support, its here on this site. I also lurked around for weeks before first posting. My boyfriend was diagnosed with stage IV squamous nsclc. He has mets to the brain and liver, as well as involved lymph nodes. During his first line of treatment, his tumores shrunk 30 %. After the second scan, it stopped working and thats were we found the mets to the liver and 2 additional mets to the brain.He stopped smoking in July, and when his cough persisited, he went to see his doctor. At first it was thought to be bronchitis. But with the drastic weight loss and still persisitant cough, A CAT scan revealed that nasty beast growing inside him. With possitive thinking and attitude along with many prayers, i am sure we can get thru this. There are many miracle stories here. I hope yours will turn out miraculous as well.God Bless.
Lucy

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