Kristi Posted March 12, 2009 Share Posted March 12, 2009 Hi. My name is Kristi and my dear Daddy, John was diagnosed a few weeks ago with Stage III non-small cell lung cancer. He is 69 and has been a smoker since he was a teenager so this wasn't a huge shock to our family but devastating none-the-less. I am so upset over this. I love my Dad soooo much and have so many questions. He has undergone two weeks worth of radiation treatments and the tumors are shrinking. He also has Vena Cava Syndrome which is giving him fits with swelling and breathing issues. I live 500 miles away so I haven't even been able to hug him. I talk to him almost daily though and he is in good spirits although he has mentioned that he knows his odds aren't good. I tell him to FIGHT THIS!!! There is a Cancer Treatment Center of America in Tulsa, very close to where my parents live and I have begged them to check it out but they are sticking with the local cancer doctors for now. I need opionions on CTCA. Does anyone have any knowledge of them, am I right in wanting them to fight this or at Stage III, do you give up that kind of hope? I want a miracle!! I want him to be around for as long as possible!! I feel like I'm the only one wanting them to seek something more. I have this overwhelming sense of urgency in him getting the BEST treatment possible. I also feel this pain in my heart at the thought of losing him. I'm just not ready to lose him. This is the worst rollercoaster I've ever been on. I catch myself crying at any given time. I think about what a wonderful father he was to us growing up. I think about how I don't want him to suffer. It's just so painful. Oh God, why do these things happen to good people? The good news is I'm leaving to go visit my Daddy in two days and can hardly wait. Thank you for reading. I ran across this site while researching my Dad's cancer and such and I'm sure I'll be visiting the other forums along the way. In the meantime I will be praying for that miracle. Quote Link to comment Share on other sites More sharing options...
cat127 Posted March 12, 2009 Share Posted March 12, 2009 I'm so sorry you are dealing with this and I have to say, I totally relived those feelings of the first few weeks as I read your description of how you are feeling. If it helps you to know, though the roller coaster ride aspect is always there, that overwhelming urgency feeling does settle down. You get into a groove with the treatments, you learn to live from scan to scan. I will preface things with saying that I am very much a realist, and I'm a scientist so I'm all about numbers and data. That said - you NEVER give up hope. NEVER. My sister is stage 3b, and next week it will be 22 months since her diagnosis. Now sure, I wish I could tell you that my sister is now cured, but she isn't. (though please do know, there are people with stage 3 NSCLC that get cured, so again, never lose hope). So she isn't cured, but she is stable, and she is alive. And she has been really enjoying the time she has, knowing that she may not have the 80+ years that our mother had. But she is living a very normal life (as normal as it can be with scans and drugs etc). She and our other sister and I went to Paris for a week in October. I guess there is a degree of all of us trying to pack into the time now, all the things we may have wanted to do in the next 15 yrs. But we also haven't stopped hoping that in 15 yrs we can say to her - how fun was that trip to Paris? We still have lots of hope. Take care and enjoy the time you spend when you visit with your father. I think you will feel a little less scared of it all when you see him. And like everyone else here, you and your family will fall into a routine and you will deal with all that this hideous disease throws at you, because there is nothing more you can do but deal with it. And one day you'll be shocked at how well you are dealing with it. My other sister still says to me - remember how horrid it all felt that first month? Not that it isn't still horrible, but we are learning to deal with all that it hands us. And you will too, I promise! Quote Link to comment Share on other sites More sharing options...
Donna G Posted March 12, 2009 Share Posted March 12, 2009 Hello and welcome. It must be so hard to be so far away. You say your Dad has vena cava syndrome? Does he have a Pancoast tumor? That is a tumor up in the apex on the lung. Many here have had that, including myself. I started with daily radiation, and chemo until it shrunk enough for surgery. You can read my story by clicking below. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 12, 2009 Share Posted March 12, 2009 Hi Kristi. I am so sorry to hear about your dad and of course you are so upset. A LC diagnosis is quite devastating. You sure do have the right fighting attitude though. You should tell your dad of the success stories here. And most importantly that there is always HOPE. Will he be receiving chemo as well as radiation? It is great that you are able to go and see him soon. I am sure that will brighten his days and help him to fight this thing. Please take care and let us know how you and your dad are doing. Sandra Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 12, 2009 Share Posted March 12, 2009 Hi, Kristi, welcome to the group! You've already received some excellent responses to your post, and they contain a lot of wisdom. For example: ...Like everyone else here, you and your family will fall into a routine and you will deal with all that this hideous disease throws at you, because there is nothing more you can do but deal with it. And one day you'll be shocked at how well you are dealing with it. I can personally attest to that as I look back on the past 30 months (follow the second link in my profile below). From your message I gather that the purpose of your dad's radiation was to shrink the tumor which has been pressing against the superior vena cava and causing his swelling and breathing issues. This immediate problem needed to be addressed before considering surgery or starting chemo, which presumably is next on the agenda. When you get more information on that, such as the specific chemo drugs planned, please let us know. After a considerable amount of searching, I now spend most of my cancer-related online time at two sites: this one, which is truly a part of my extended family, and for the more technical medical issues, cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. I have no personal knowledge of CTCA, though of course I've seen their TV ads. Some have said that they pick and choose the cases they will accept to keep their "numbers" up, though I can't confirm that. But I can say with confidence that cancer treatment at least as competent and compassionate is available at many places, including the hospital and oncology clinic 25 minutes from my house and very possibly the place where your dad is receiving treatment. The more you know about your dad's condition and the accepted standards of care for his specific type of cancer, the better you can be assured that he is getting the best treatment available. You'll be surprised how fast you can get up to speed on these issues. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Kristi Posted March 12, 2009 Author Share Posted March 12, 2009 Donna, I'm not sure - I haven't heard the word Pancoast yet but I would assume so if this is the general term for these type tumors. Ned, you hit the nail on the head in your reply. From your message I gather that the purpose of your dad's radiation was to shrink the tumor which has been pressing against the superior vena cava and causing his swelling and breathing issues. This immediate problem needed to be addressed before considering surgery or starting chemo, which presumably is next on the agenda. When you get more information on that, such as the specific chemo drugs planned, please let us know. That is exactly why he hasn't started chemo yet. I also wanted to mention that this morning before my parents went to his radiation appointment, he was having a hard time moving his feet, as in his brain wasn't able to tell his feet to move. They told his doctor this and they ordered an immediate brain scan, presumably to see if the cancer has gone to the brain. No results as of yet and I'm sure none of us will sleep tonight. He had a full body scan a few weeks back when it was discovered and came back with a clear brain scan at that time. I'm just praying it was something else. He's been dealing with awful blood pressure issues over the last year as well. He is no longer driving either because he had a short black out spell last week while driving! My mom has officially become his chauffeur. His last radiation treatment is tomorrow and then gets a 2 week break, followed by a new scan and new treatment plan. Anyway, I wanted to say thank you for the wonderful welcoming replies, words of wisdom and those links. I'll definitely be checking them out. Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 12, 2009 Share Posted March 12, 2009 http://lungevity.org/l_community/viewto ... os+america Ok after spending a half hour searching posts I do remember that one of our members did participate in CTCA treatment program and He did enjoy their facilities. I believe he went to the one in Illinois or in that area of the world. I cant recall his name though! Said they were very professional and thorough in explaining and carrying out their treatment plans and included many options and Programs involved in treatment options Quote Link to comment Share on other sites More sharing options...
Kristi Posted March 13, 2009 Author Share Posted March 13, 2009 Randy, thank you! I'm going to request the video mentioned in the link. I appreciate it!! Quote Link to comment Share on other sites More sharing options...
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