JValentine Posted April 27, 2021 Share Posted April 27, 2021 Hi all, I am sorry to post here, please delete if I am in the wrong place or if my questions are not allowed here? My dad has Alpha 1 lung disease, a nasty disease that makes his lungs fill with fluid and it will eventually kill him. He has about 3-5 years left. He's 67. For last 3 months, every couple weeks he coughs up a small black clump of blood. His shortness of breath (hopefully from his COPD) is so bad he has to lie down after climbing the stairs. He can walk miles if it's flat, up, no. He managed to get in at his docs and they urgently referred him, today he has had a contrast CT scan and on Tuesday he will have camera into the lungs. The consultant said I don't think it's cancer, as you have no other symptoms whatsoever and look and feel very well. No weight loss, no chest pain, no night sweats, nothing, he feels fine in himself apart from the cough and shortness of breath. She said she has a large list of things she has to rule out, it could be asbestos related, which is also terrifying. I am hoping and praying it's just his COPD. I have lost the plot today. Does anyone have any experience? Or reassurance? Can't say anything at home as don't want to worry my son Help :'( Link to comment Share on other sites More sharing options...
Judy M2 Posted April 27, 2021 Share Posted April 27, 2021 I'm so sorry your dad has this disease. I've never heard of Alpha 1 lung disease and had to Google it. I am also 67 but with Stage IIIB non-small cell adenocarcinoma. It will take time for the test results to come back. If lung cancer is diagnosed (and let's hope it isn't), your dad should get biomarker testing to look for gene mutations. Some of them are treatable with a daily pill. For example, I have an EGFR gene mutation and take a targeted therapy drug which is working very well. If no cancer is found, one question to ask is whether treatment would include augmentation therapy for his Alpha 1. There are no wrong questions. I hope your dad gets answers and relief soon. Link to comment Share on other sites More sharing options...
TJM Posted April 28, 2021 Share Posted April 28, 2021 JV You are more than welcome to post here! Keep us informed. Peace Tom Link to comment Share on other sites More sharing options...
Jesse L. Posted April 28, 2021 Share Posted April 28, 2021 No one and I mean no one here will delete anything you write within reason about you or yours lung cancer concerns. We are all here to support each other and provide as much information as we can to each other about our respective cancer journeys. That being stated, I too had to look up alpha 1 disease as I'd never heard of it before. I would strongly urge you to relax and wait until there is conclusive evidence of whatever lung conditions that are causing your Dad's lung difficulties. I know...easier said than done, but please look at it this way. Regardless of your anxiety level that will not change what his diagnosis or possible prognosis might be. So,save your sanity! Be involved, be patient, be as positive as you can be, but most of all (I think) is to become as informed as you can about everything as it may relate to your Dad's possible conditions. In my opinion that is the only way to fight the all too prevalent anxiety and fear that can come with a debilitating lung condition. By all means ask as many questions as you wish about your concerns...we are not medical professionals, but we have a wealth of experience about this disease. Take care of yourself and stay in touch... Link to comment Share on other sites More sharing options...
JValentine Posted April 28, 2021 Author Share Posted April 28, 2021 Good morning all, Thank you so much for your replies. Alpha 1 antitrypsin deficiency is hereditary, he mother died from it, 2 of his sisters have it and some of my cousin's unfortunately have inherited it too. Thankfully, I have not inherited nor my siblings. With regards to augmentation therapy they do not offer this in the UK, his top consultant has promised to give him a better quality of life once all these awful things are ruled out. Jesse, that's what I keep telling myself, me sat here in a high state of anxiety isn't going to change a thing. He is certainly not worried and is feeling happier that they will now get to the bottom of it so to speak. Many thanks again all. X Link to comment Share on other sites More sharing options...
JValentine Posted May 11, 2021 Author Share Posted May 11, 2021 Hi all, He has squamous cell carcinoma, bottom of right lung which has spread to liver. There are 2 small dots on his liver. They have said its not curable but it is treatable. I am broken x Link to comment Share on other sites More sharing options...
LexieCat Posted May 11, 2021 Share Posted May 11, 2021 Any time the cancer has spread to another organ, it's considered "incurable." Which does NOT mean untreatable. There are people on this forum 15+ years out from an advanced ("incurable") cancer diagnosis--including one who has been pronounced "cured" after 17 years. There are plenty of reasons to feel hopeful in spite of this diagnosis. Link to comment Share on other sites More sharing options...
JValentine Posted May 11, 2021 Author Share Posted May 11, 2021 Thank you Lexie Cat x Link to comment Share on other sites More sharing options...
Jesse L. Posted May 11, 2021 Share Posted May 11, 2021 Just another word from me. I am 64 yrs. old and in the process of adjuvant chemotherapy treatment for stage 3a lung cancer. I had VATS surgery to remove my RLL in which the one and only small tumor (1.8 mm x 1.2 mm) I had was residing. Now, even though no growths, lesions, or even any noted possibilities of cancer showed on any subsequent scans, that does not mean I am cured. For what it's worth, the high chance of recurrence will mean most likely that I will never be "cured". Therefore, in my opinion, that word "cure" is not exactly a word that should be associated with lung cancer. Even if most likely after my chemotherapy there is still no sign of notable cancer, I will be on a schedule of scans every three months for two years, then every six months for the next two years, and then finally back to annual scans starting in the fifth year. And that is if they continue to find nothing... If scans indicate anything at all, treatment will start all over again and so will the enhanced schedule of scans. Of course the enhanced schedule of scans is to catch any possible growths at the earliest stage where it is most easy to treat. Everything in this paragraph is pretty much standard practice for every lung cancer patient and there is nothing I've noted so far that indicates "cure" as in "don't ever have to worry about this anymore as it will never happen". However, with the above being stated, cancer can now be treated and managed as never before. Many people on these forums are living much longer and fuller lives despite some very bad life expectancies. Some even get to the point of NED (no evidence of disease) which is as good as it gets, but that doesn't mean cancer can never come back. It just means a person doesn't have it now. The above is not meant to scare you nor anyone for that matter. It is meant to let you know that there is hope now for a future of some kind for as long as anyone is allowed to be on this earth. Not a single one of us has any guarantees about how long we'll live, cancer or no. So, stay positive, stay comitted to life, and learn all you can to allay anxiety and fear. Make the most of every day... I've often stated that the older a person gets the more important "time" becomes; even more important than money. Stay in touch...we'll help any way we can... Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted May 11, 2021 Share Posted May 11, 2021 I'm so sorry to hear of your dad's diagnosis. I wanted to share some information about squamous cell lung cancer: https://lungevity.org/squamous-cell-lung-cancer Also to echo what others are saying, just because it spread does not mean that it can't be treated. A person with stage IV lung cancer can be "stable" or "No Evidence of Diseas (or NED)". In both of those cases people are living well with lung cancer. LUNGevity is hosting it's annual HOPE Summit later this month. It is free to attend and is for lung cancer patients, survivors and caregivers. The time difference might be a bit of a challenge, but the sessions will be recorded and sent out to those who are registered. Here is where you can sign up: https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=970 It will be filled with great information for you and your father. Thinking of you and your dad. Link to comment Share on other sites More sharing options...
TJM Posted May 11, 2021 Share Posted May 11, 2021 3 hours ago, JValentine said: Hi all, He has squamous cell carcinoma, bottom of right lung which has spread to liver. There are 2 small dots on his liver. They have said its not curable but it is treatable. I am broken x You are not broken. Take a day off then re engage! Link to comment Share on other sites More sharing options...
JValentine Posted May 11, 2021 Author Share Posted May 11, 2021 Good evening all, Thank you very much for your helpful replies. You have given me hope and perspective. My very best wishes to you all x Link to comment Share on other sites More sharing options...
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