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LOOKING FOR INFO FROM SOMEONE WHO IS IN MY SHOES

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I was almost a 2 year NED from SCC of the tonsil with mets to lumphnodes in right side of neck. I now have numerous lymph nodes and 2 small tumors in the right side of my lung. The lymph nodes are in the mediastynum area, and the 2 tumors are in the right lower lobe.

After the biopsy yesterday, my Onco Doc has said surgery no longer an option, and not cureable, only treatable, whatever that means.

I know nothing about lung ca only that is scares the crap out of me.

Looking for information and advice from people who are successfully being treating and living with this.

I will post my treatment plan next wednesday after I meet with my Onco Team.

Best

Mike

z's picture
z
Posts: 1250
Joined: May 2009

Hello, Sorry you had to find us. I have had anal and lung cancer which were 2 seperate primarys, so my tx was chemo/rad for anal and surgery vats lower right lung removal for the lung. Both were squamous cell, but the lung had no hpv whereas, the anal did, so therefore not a met.

I know there is a poster who had the scc of the head or neck, and then also the lung and he will probably chime in. Soccerfreaks if you want to look that up. I also visit the Inspire web site and theres a lot of posters there. I wish you well.

Maxwell3946589
Posts: 3
Joined: Oct 2012

I have been following you on the internet for a while. We are going through the same thing as you. I have not beem anyone to help me. I would like to touch base with you and yours. I am just starting on this battle and do not wher to turn

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Mike:
There are quite a few of us head and neck refugees here in the lung cancer area. I won't know whether I am a member or just a guest until next week, when I get a repeat CT. You might want to visit "Lungevity" and its message boards. Their boards are a little hard to navigate, but worth the effort.

If you have not already read it: djs 123: "Stage IV Lung Cancer - Please Give Me Hope" has a lot of hopeful information. I ordered the book mentioned, but have not received it.

katenorwood
Posts: 1804
Joined: May 2012

maxwell...
Wanted to let you know there are others in the boat with you ! Maybe we can all be of assistance to one another ? You are never alone ! Do you have mets too ? I'm finding out this is different than LC...but maybe similar tx's ? Katie

katenorwood
Posts: 1804
Joined: May 2012

Mike,
I think hearing not cureable is a shock to the system. But saying this I'm living proof words are words... just that. My dx has no cure and few options as of today for treatment. But I will not let this deter me for going for the golden ring ! My new doctors are giving me hope for the best quality of care that they can get for me. Not sure of treatments yet other then surgery on the right lower lobe (lung). Stay in the fight Mike and if you can read soccerfreaks blogs...I wish I had more positives to give. Just know that today we take one step at a time....and you have alot of people in your corner ! Katie

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