icbn Posted July 13, 2006 Share Posted July 13, 2006 Went to the VA Oncologist for first time. They performed a CT scan and I was given the results last week. According to the VA, NED. Nothing, Nada, zip. Go home, don't bother us. I already had a PET/CT scan ordered by my non-VA oncologist and I just received those PET scan results today. The old mediastintal (sp?) lymph node is okay, although still enlarged but no SUV. But, from the report... "There is a new area of hypermetabolic activity with a maximum SUV of 7.8 just in the subcarinal space. In retrospect, this area was subtly abnormal on the previous examination of 03/31/06. There is now increased soft tissue in this location with a markedly elevated SUV." I don't know what that means, but there it is. I see the Onc tomorrow. One thing for sure, the VA operates with blinders on. A CT scan is accurate 63% of the time, a PET scan is 97% accurate. IF they used better techniques the VA might find something wrong with a Veteran and then have to pay to fix it. Hear no evil, speak no evil, avoid cost? Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted July 13, 2006 Share Posted July 13, 2006 Bill. Waiting on pins and needles to hear what the onc has to say. Hang in there. Cindi o'h Quote Link to comment Share on other sites More sharing options...
ztweb Posted July 13, 2006 Share Posted July 13, 2006 ICBN, So sad. I know what you mean. This is sad. My parents' small town docs keep telling my dad he doesn't need to go to Mayo because they can do it all there. Well, the day he went into the hospital, the doc ordered a physical therapist to come in and teach my dad how to walk...yeah...my dad had walked in there, walked from room to room, and walked out...can you say racket???? So sad we have to take control of our own care! Urgh!!! Good luck...maybe NED is for real...zip, nada, adios amigo! Jen Quote Link to comment Share on other sites More sharing options...
kamataca Posted July 13, 2006 Share Posted July 13, 2006 Hoping it is all about our buddy NED! I agree with you on the sad state of Veterans hospitals. Their hallways should be paved in gold, with all of the best of everything. It is just a crying shame. Waiting to hear your good news...lots of prayers. Kelly Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 13, 2006 Share Posted July 13, 2006 Praying it really is NED and you can relax. Don Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted July 13, 2006 Share Posted July 13, 2006 I'm in agreement with you about the VA, they really didn't help my dad at all. When you talk to your onc. tomorrow, ask him/her to explain exactly what that means in simple terms, no medical bs-ing. If you can try to seek another opinion. I hope everything turns out alright for you Grace Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted July 14, 2006 Share Posted July 14, 2006 Yea, try to make em explain the report till ur satisfied. Hate that medical "secret code" language. Anyway, good luck, hoping for the best for you. Rich B. Quote Link to comment Share on other sites More sharing options...
marym Posted July 14, 2006 Share Posted July 14, 2006 Wishing you the best. Mary Quote Link to comment Share on other sites More sharing options...
trish2418 Posted July 14, 2006 Share Posted July 14, 2006 My thoughts and prayers are with you. Trish Quote Link to comment Share on other sites More sharing options...
Don M Posted July 14, 2006 Share Posted July 14, 2006 Good luck. Don M Quote Link to comment Share on other sites More sharing options...
Connie B Posted July 14, 2006 Share Posted July 14, 2006 It's nice of you to try and keep the VA hostial on there toes though!! Maybe they can and will learn from you. One never knows! I sure am going to say an extra prayer for more good news though. I'd LIKE to think the CT/PET scan is right on the button, but I know there's no such thing as Scan being 100% right. Good luck, and keep us posted. Quote Link to comment Share on other sites More sharing options...
icbn Posted July 15, 2006 Author Share Posted July 15, 2006 Thanks everybody. Every time I post and read the responses, or respond to others I read the Sig lines. I am always impressed with the courage, grace and compassion of this special group of friends at LCSC. Katie you have created more than you know. Just a small example, I got a call early this morning from my Onc's Office. The Doc went home sick. So rescheduled to Monday. So I will have to wait to decipher the results. I tried to Google search sub-carinal and got a lot more stuff that didn't apply to my quest for basic information. Then I did a search of LCSC's MB and found that Joe B had the same PET results in 2004. His was attributed to radiation glow, not cancer. I looked at the sig lines of others with sub-carinal involvement and saw what might happen if it is accurate. I was also able to focus my search on the web with a better understanding and locate more info. The Sig lines are a wealth of information of what we might possibly encounter on this otherwise unknown and dark journey. It is so helpful to see how others are in fact coping and that coping, even beating this thing is possible. It also humbles me when I see others suffer so much more than I with such grace and courage. Thanks Katie B. And Thanks to all who responded in this thread. You guys rule. Quote Link to comment Share on other sites More sharing options...
joanie55 Posted July 15, 2006 Share Posted July 15, 2006 I'll be thinking of you all weekend and really hope Monday everything turns out NED. I totally agree with you about LCSC. When I started this journey, I knew absolutely nothing about LC. So much info from people that have "been there, done that" and so much compassion. Feel well. Joan Quote Link to comment Share on other sites More sharing options...
pammie Posted July 16, 2006 Share Posted July 16, 2006 Will be praying that you are NED. Thank you for your service to this country. We deeply appreciate all the veterens. Wish the medical services were better for all of you. God bless. pammie Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 16, 2006 Share Posted July 16, 2006 icbn, I can't offer any knowledge about your scan but I can offer my prayers and profile. Nina Quote Link to comment Share on other sites More sharing options...
Welthy Posted July 16, 2006 Share Posted July 16, 2006 Icbn, Sorry you have to wait over the weekend. Sorry you have to be "here" at all! Hoping for some good news on your reports. Let us know. (I know what you mean about the sig lines -- they are a ongoing source of hope and inspiration for me.) Best Wishes, Welthy Quote Link to comment Share on other sites More sharing options...
dchurchi Posted July 16, 2006 Share Posted July 16, 2006 Bill, Prayers that on Monday you will find out that the results are NED Quote Link to comment Share on other sites More sharing options...
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