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Newly diagnosed with Squamous Cell Lung cancer


MarkH

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Hello everyone. I have 2 large masses on my mediastinum, a solid one (9 cm x 7.5 cm), a 4.6 cm x 6 cm pericardium soft tissue mass, an enlarged left supraclavicular lymph node (2.5 cm x 2.3 cm) and several nodules in my lungs. Also, multiple pleural based nodules. Waiting on a brain scan and genetic testing. The microscopic report for my needle biopsy on my lymph node showed it was Poorly differentiated squamous cell carcinoma in a desmoplastic background.

Most of this is on my left side with very little in the right lung. I am still fairly healthy and can work still. I am not sure of where I stand on the prognosis, but according to my oncologist at Karmanos cancer institute in Flint, MI, it is stage IV due to mets to my lymph node. I know I am supposed to be positive, and I feel that I am as much as humanly possible, but I am not feeling much hope to be quite honest. 

I am starting chemo (Taxol) and immunotherapy (Keytruda) next week. I feel that this is a very ominous situation, but I am fighting as hard as I can. Not sure how long I will feel fairly healthy or of what the progression will be like. It seems like things could go bad very quickly.

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Mark,

I was diagnosed almost 19 years ago with squamous cell non small cell lung cancer (NSCLC), the same type you have. My first therapy was fractional radiation (6 weeks, M-F) and weekly Taxol and Carboplatin. Your treatment differs from mine in a very significant way: you are having combination chemotherapy (Taxol) and immunotherapy (Keytruda). This type of treatment was unknown when I was diagnosed and immunotherapy is a game changer in our disease.

Lung cancer is an ominous situation. It is difficult to arrest because it mutates around conventional chemotherapy. That is where the immunotherapy plays a big role. It trains your body's immune system to recognize both the cancer and mutations and kills both. So I would put a hold on your prognosis. You may do very well indeed. One more thing--if I can live, so can you!

Stay the course.

Tom

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Thanks Tom. It really does help to speak with others that have been through this. I am finding out that when I think too far into the future, that is when it affects me the most mentally and emotionally. I am starting to understand what it means to not think too far into the future and just think about what you need to do right now. I think that as time passes, it becomes easier to accept the unknown future. I say that with only knowing for a week. Before the actual biopsy, I was told that it was most likely lymphoma, which sounds easier to fix. At that point, I thought that I would have to go through treatment, and I would eventually be fine. 

When the oncologist told me it was stage IV lung cancer, what he said did not make me feel very hopeful. He almost sounded dismissive, like I may as well give up. He even said that some people choose not to get treatment at this stage. That is when I decided to look for a second opinion. I am fairly sure his diagnosis is correct, but I want to make sure that no stone is unturned.

My wife was devastated and is not handling it well. That is the most difficult part for me. I can handle dying but cannot handle the thought of her being alone and without a good way to generate income. I feel like Walter White, AKA Heisenberg. I don't mean to make light of a serious situation, but that is how I handle it when I am not getting emotional about it. I am certain that I will be on a roller coaster as far as how I handle it.

Hopefully, I can help someone else someday like you are doing for me. Thank you.

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Hi Mark 

Welcome to the forum I'm really sorry you have to be here though, this lung cancer journey is tough but you do need to stay positive even though its hard to, I worry about my family more so than the actual dying part of this situation and it hurts me to see them so sad,

The treatments are a lot better today and gives us all a fighting chance, I think your right to get a second opinion but get the treatment started as soon as you can and definitely get the brain scan done,

All the best and goodluck Justin 

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Thank you Tom and Justin. As it happens, I got the call from MD Anderson a few hours ago that I can go there in a couple weeks to get the second opinion. And they said I should get the treatment and brain scan that I am scheduled for next week where I live in Michigan. I wasn’t sure what they would say about that. It gives me a bit more confidence that I’m getting the best treatment possible by getting another look at things. 

I appreciate all the good things you are telling me. I’ll read through all of the stuff you sent me for sure. This has all put me in a better state of mind than earlier today.

I promised my son I would never stop trying. He knows how stubborn I am!

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I am so sorry to hear you have this tough diagnosis but glad to see you on this forum, it is the best out there for lung cancer patients as well as their caregivers. I understand what you say about not being afraid of death rather being afraid of the pain and suffering death would cause one's family. I am a mom of a first grader and the idea of him being orphaned makes so me deeply sad and terrified. But we have to keep hopeful and fight, no one knows what the future holds. Some stage 1 patients do not make it while some stage 4 patients live for years, even decades. The extreme uncertainty is brutal, and it take a long while to accept life with it. Give it a few weeks, or even months, and you and your wife will adjust to your new life. It is important to focus on living the moment as much as possible (while still acknowledging the persistent grief this diagnosis causes). I found it helped me a lot to think of practical matters, like wills, directives and the like so I could at least remove the things I can control from my pile of worries. It is very tough still but much better than when first diagnosed. Try to stay positive and maybe your wife would benefit from talking to a councillor if she is severely affected by the situation. Good luck!

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Hi Mark, I'm Justin's mum. Sorry to hear your news, I know you must be devastated but there is always hope, I know how your wife is feeling as she will feel there  is nothing that she can do. It's so tough seeing someone you love going through such pain and the feeling of helplessness is overwhelming. As a mum I truly do know how she feels so if she ever needs a shoulder or someone to talk to I would be more than happy to listen. Jus has been incredible and gone through some gruelling treatment but 18 months on he's still here and still fighting. Let your wife know she doesn't have to do this on her own we are a family on this forum and always here to listen and support, take care Isla x

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Thank You Izzy, Thank you for the offer to contact you. That is very sweet of you and I am thankful for your support. I know it will be brutal going through this, but it helps knowing that there are survivors out there that are getting through it. Thank you so much. I see that you are from the UK. I work for a wonderful company based in the UK in Wotton-Under-Edge near Bristol. I have been there several times and enjoyed it very much. I even took my guitar and did an open mic night and was warmly but sternly forced to get up and play, which I enjoyed immensely.

Cheers,

Mark

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How lovely Mark, I had family in Bristol we are about an hour away from there, your wife or you can always private message me if you want to. You  can do this Mark and tell your wife she might feel lonely at times but she's never alone, always here for a chat if she needs it,  take care nice to talk to you , hang in there, Isla x

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