Don M Posted January 10, 2007 Share Posted January 10, 2007 I had a bronchoscopy last Wednesday. I have an appointment this Monday in Seattle to discuss the results. I expect it to be inconclusive because the doc told my wife he could not get the scope all the way down to where the apparent tumor growth is. He did irrigate the area with a saline solution in hopes of sucking up some cells for the lab to look at. I don't think he collected any tissue if he could not get the scope down there. He told my wife that they would probably have to rethink the next step. The docs at Swedish think that it is very unlikely that the uptake on the scan would be from dying tumor inflammation 6 months after the radiation, but they also think that it is very unlikely that I would have the tumor more than triple in size in the last 3 months right after some hard core treatment, and when the tumor had been at 1 cm more or less the previous 12 months. They refer to it as a "head scratcher". They don't want to recommend more treatment unless they have physical evidence that the tumor is actually growing and they don't want to pat me on the back and tell me not to worry either. I suppose a needle biopsy could be the next step, but there is a risk now because I have only one lung and it could collapse. The next step could be to wait for a month and do another PET/CT scan to see if the uptake glow has shrunk or is getting bigger. It has been almost a month now since my last scan. I am not too freaked out about waiting another month to see because I think the tumor is dying. I really don't like the idea of doing more treatment and not knowing for sure if I really need it. If I had not had the recent treatment, the uptake would almost certainly be from cancer and I would have started treatment immediately. The tumor is too deep within my lung to do a wedge resection biopsy. Another possibility is that the glow could be caused by radiation recall. The oncologists don't know if alimta does this or not, because it is a new drug. I am in a bit of a limbo. Don M Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 10, 2007 Share Posted January 10, 2007 Sounds like a plan in place. Thanks for keeping us updated, Don. Don Quote Link to comment Share on other sites More sharing options...
trish2418 Posted January 10, 2007 Share Posted January 10, 2007 I wish the news had been better for you -- "limbo" is no fun at all. I'm keeping my fingers crossed that your excellent team of doctors can get to the bottom of it all. Hang in there. Trish Quote Link to comment Share on other sites More sharing options...
joanie55 Posted January 10, 2007 Share Posted January 10, 2007 Don, I know your doctors are extremely thorough and so are you. I hope this is figured out soon, because I know limbo is not where you really want to be. I totally have confidence they will get to the bottom of this. Joan Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted January 10, 2007 Share Posted January 10, 2007 I hope your doctors can get to the bottom of this dilema quickly and put you on the right course. Praying for you. You're in a tough spot. Joanie ((())) Quote Link to comment Share on other sites More sharing options...
Nick C Posted January 10, 2007 Share Posted January 10, 2007 Wow Don...full plate... Good luck to you!!! Prayers that they figure out whatever they need to figure WITHOUT a needle biopsy... Quote Link to comment Share on other sites More sharing options...
shineladysue Posted January 10, 2007 Share Posted January 10, 2007 Don, You keep up the positive outlook. Will be keeping you in my prayers , as always. Sue Quote Link to comment Share on other sites More sharing options...
carolhg Posted January 11, 2007 Share Posted January 11, 2007 Wow, that truly is being in limbo. Don I am praying that the tumor is dead,dead, dead and that you can move on with your life. Carol Quote Link to comment Share on other sites More sharing options...
Kasey Posted January 11, 2007 Share Posted January 11, 2007 Your attitude toward all that is thrown your way never ceases to amaze me, Don. I will remain hopeful that this will be resolved with the plan put in place. You SO deserve a break from this dreaded disease. Now is the time. May the head-scratcher turn into one of those 'aha' moments for you. Kasey Quote Link to comment Share on other sites More sharing options...
marym Posted January 11, 2007 Share Posted January 11, 2007 Oh I hope they find something of no concern. It's good to gain more evidence before treatment - we get enough stuff without taking it unnecessarily. Please keep us informed. Mary Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted January 11, 2007 Share Posted January 11, 2007 Don,that phrase your drs. use a Head Scratcher is a good one.I'll remember to add that to my vocabulary.It's a good one. Sounds like your all in control there.Good luck with decisions. Quote Link to comment Share on other sites More sharing options...
dchurchi Posted January 11, 2007 Share Posted January 11, 2007 Don, To me there is no worse place than Limbo Land and yet you handle it so very well. I hope that maybe just maybe the Dr. was able to get enough cells from the washing to get and accurate pathology report. Alan and I will keep you in our prayers. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted January 11, 2007 Share Posted January 11, 2007 Prayers for the best. Quote Link to comment Share on other sites More sharing options...
blaze100 Posted January 11, 2007 Share Posted January 11, 2007 Hi Don, I am sorry the waiting is always so hard. You haven't heard back on the broncho, that could be a good sign. To me, it doesn't make sense that the tumor would still be alive after that kind of intensive treatment. Only something from Star Trek could survive that kind of blast. But like my surgeon told me, this stuff is "voodoo science". It makes more sense that the increase in size is from adding additional 1 cm margin to the radiation field the whole way around tumor. I know surgically they always want to take at least a 1 cm clean margin out along with the tumor. And 1+1+1=3cm. So I think your docs have a good plan to wait awhile and PET again to see if SUV goes down. If they start treating now, it could only create more scarring and confound your future scans. Because then you never really know what's going on. I'm keeping you in my prayers Don. Barb Quote Link to comment Share on other sites More sharing options...
Maryanne Posted January 11, 2007 Share Posted January 11, 2007 Hi Don, It really does sound confusing Let us know when they interper it for you. Keeping you in my prayers. Maryanne Quote Link to comment Share on other sites More sharing options...
sharonjo Posted January 11, 2007 Share Posted January 11, 2007 Don, When I grow up, I want to be like you! Life has thrown so much at you and yet you continue to perservere AND with such a super attitude. I am praying that your tumor is dying and the next round of scans will show just that. Hang in there and stay strong! You are an inspiration to all of us here on the board. God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
Treebywater Posted January 11, 2007 Share Posted January 11, 2007 Don, I am sorry for the limbo.... and praying that you will get to the bottom of things soon. Quote Link to comment Share on other sites More sharing options...
ma's kid Posted January 11, 2007 Share Posted January 11, 2007 Praying really hard for you that soon they find the answers. Hugs, Libby Quote Link to comment Share on other sites More sharing options...
kreed70 Posted January 11, 2007 Share Posted January 11, 2007 Don~ Hope that they figure it out- soon! Maybe you'll be one for books and we'll read about your treatment in researching LC sites! Check w/ Dr. West too!! Kelly Quote Link to comment Share on other sites More sharing options...
Linda661 Posted January 12, 2007 Share Posted January 12, 2007 If anyone can turn limbo into mobil-e for a course that will win this, it's you and your team. Keep us posted. Sending prayers your way, Linda (the best "making lemonade out of lemons" analogy I could get from limbo: you're so good at doing that sort of thing Don!) Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 13, 2007 Share Posted January 13, 2007 Don, Xsite Lung Tracking System is the new software for Cyberknife for LC...Accuray in Sunnyvale, CA.. Found the information on Google, it is 3D and 4D. Can be used without the fidicials. Didn't say when they were going to start using the system, at least you have the name of the software. Maybe you can research and/or ask the doctors... Prayers, Karen Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 13, 2007 Share Posted January 13, 2007 Head scratcher is a down to earth way of saying what my uppitty doctors call being "perplexed". In any event, sounds better than "I don't know..." Don, you will get through this one too. I wish I had the words to make you feel all better, but they are not coming to me. I have something to make you laugh, but I don't think that's what you need right now. Don't have any advice either, dangit. Think of you often, Don. Just can't believe that this continues on for you one hurdle after another. Hope they can get a nip of the creature and find out what in the world they (you) are up against this time. In the meantime, You Know WE are all pulling very hard for you. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted January 13, 2007 Share Posted January 13, 2007 Hey Don, Just thinking of you and wanted to let you know that your in my prayers. GOD BLESS!! Jamie Quote Link to comment Share on other sites More sharing options...
kamataca Posted January 13, 2007 Share Posted January 13, 2007 You amaze me! Sometimes I think you are just messing with these doctors...throwing curve balls at them. Take it easy. Kelly Quote Link to comment Share on other sites More sharing options...
Cheryl Ferguson Posted January 13, 2007 Share Posted January 13, 2007 I agree Don, I don't want any treatment unless I am sure that I have reason to go thru it. Maybe a little limbo is not so bad. At least they are not jumping to conclusions. Good luck Cheryl Quote Link to comment Share on other sites More sharing options...
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