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Hello, I'm new to this


Alan

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Hello everyone, my name is Alan. I'm a lc survivor. I had a pancoast tumor right apex. My treatment began in june 09. I had 30 radiation treatments and chemo (cisplatin + etopicide). After all that I was going to have surgery to remove what was left. That became impossible due to invasion of T1 vertebrae. Then I had 6 more chemo treatments with taxitere every 3 weeks. Plus 5 treatments at Cyberknife of Philly. All done by Jan. 2010. I've been on surveillance every 3 months since with no detectable cancer so far. That's the short history.

I just discovered this site in April's issue of Cancer fighters magazine. It comes from Cancer treatment centers of America. that is where all my work was done. I love that place and highly reccomend it to every one.

I was misdiagnosed for a couple months prior to our demands to look into my symptoms with a little more vigor. Primary Dr. kept calling it back spasms. There was big pain between shoulder blade and spine and tingling and numbness in right pinky and ring fingers. I also had coughing and was losing my voice. He said I had GURD so prescribed prilosec and muscle relaxers. He told me to call him if no releif in 3 to5 days. When I called back in 4 days, I was told he didn't have any openings to see me for 3 weeks. I know right.

I set up an appointment with a new Dr. next day. We met and I asked for a chest xray right now. I asked the radiology guy how long it would take for my new Dr. to get results. next morning by couriour I was told. Didn't hear anything for 22 days so I assumed there was nothing horrible. (mistake) Finally they called and said that there was a"density" consistant with a malignant tumor. They took the liberty of setting me up with a thorasic surgeon. His next available appt. guess yup 3weeks away.

None of this was acceptable to my wife Susan who had just recovered from uterine cancer less than a year ago. She also lost her father to lung cancer 25 years ago and remembered his symptoms similar to mine. She read the website of CTCA and called them. Described what was happening to them. It was thursday. They said to be there on Monday. We did and here I am today almost 2 years later. I still suffer with nueropathy in my right arm but otherwise feel normal and healthy.

My wife Susan tells me I tend to babble on so forgive me if I am. I just want to say how happy I am to find all of you. I've read alot of your stories and am inspired, gratefull and looking forward to taking part in this couragious group. God bless all of you and yours. In this fight I want to have you all on my side as I am on yours. Alan

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Alan - thank you so much for sharing your story with us and I am so glad that you are doing so well. Stories like yours give all of us hope.

I can certainly relate to your frustration with the difficulty in getting diagnosed and the delays - you are so fortunate that your wife is such a fighter (as are you) and you found the right treatment center for you.

I hope you will continue to post here.

Diane

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Welcome Alan,

So great you are here to share your experience with others. You could not have found a more supportive group of people than right here.

Many people will be touched by your story. Thanks for sharing and welcome to your wife too, she sounds GREAT!

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Hi Alan!

Welcome here. As you've already seen, this is an amazing place for support, and friendship.

Be sure to visit the daily AIR that gets posted. Sometimes I think people think that is something for the "regulars". It is not! We have formed friendships there that are going to last forever. We chat about our daily lives, and love to hear from the others about their daily lives. It's informal, and no topic is taboo. Come visit us there.

Thank God for your tenacity (and your wife) in finding the diagnosis that saved your life! That is amazing.

YOu will find many amazing stories here too.

So welcome. Jump in and enjoy.

Judy in MI

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Hi Alan, welcome. I also am a Pancoast Tumor survivor! As you can read in MY STORY in Dec. 1997 I called the DR. thinking that my chest and shoulder pain was an Orthopedic problem. I also had radiation and Cisplatin and Etopiside before I was able to have surgery and also again after. I have some nueropathy from the Cisplatin.

I am still cancer free. I pray you have had as great a response to your treatment also,. Keep us posted.

Donna G

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Welcome, Alan. So glad you're doing well!

And there's never a need to apologize for babbling on here. That's what this place is for. You'll always find people here who get it, and there's always other readers who will want to read every detail you post.

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Hi Allan,

Welcome to LCSC,I am so sorry for my late response,dont know how I missed you.Well I see you've met some of the buddies,finding this place for me over a year ago was such a blessing,it so contributed so much to my well-being,everyone here pulls to-gether,bit like the Musketeers,all for one and one for all.The site is not all about cancer,I particularly enjoy following the daily banter of the Morning Air.

I am not very knowlegable about all the technical stuff raised here,but there are such a variety of buddies here all offering their particular experiences,I am sure you will derive many benefits staying around.Are you aware of www. cancergrace.org?the Docs there are ready to answer any question's you have and are able to repond in no time at all.

Allan its a pleasure to meet you,and I am looking forward to getting to know you better.God Bless.

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Hey Allan,

Yeah, we MUST be our own advocates when it comes to working with doctors. Delay is just not acceptable and you did the right thing by finding someone who would respond.

The other day I fell off of a porch (no not drunk) and broke a couple of ribs. The breaks were found in a chest xray along with a spot in my lower left lobe. The doc said I should get a CT scan and she would schedule one. I said lets get it done NOW. Inside of a half hour I was in imaging. The report came to my doc in about an hour and she said it was not a tumor but something we needed to watch. Big relief!!! But the point is that my wife and I would have gone nuts if we had to wait even overnight. There is no reason for this to happen. We just have to be pushy about our wellbeing.

Thanks for you story of success. We all need to hear that.

Jim

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Hi Alan,

I am a pancoast tumor survivor too. I was dx'd in Sept. '04. I'm doing pretty darn good! I must point out, however, that the reason I am here is becasue of Donna G who posted a bit ago. I found this website and she set me on the right path for treatment. Up until that moment the docs here told me I'd be gone in less than 6 months! HA to them. And thanks again to Donna. Welcome to our club!!!

Kasey

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  • 2 weeks later...

Welcome Alan,

I've been reading your posts. Thanks for reaching out to Bumpkinkid (i think that's what his handle was!)

Already you fit right in here- posting and jumpin in to offer advice.

I just wanted to welcome you and let you know to keep posting. We are here for you and look forward to getting to know you.

K

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