Kasey Posted November 13, 2004 Share Posted November 13, 2004 Hoping to find Donna G. and the "group" I have herd about surviving pancoast tumors. Not sure this is where I should be or not. Hope so. I am a 58 year old retired elementary teacher. My husband just retired early as well so we could spend our time together doing what we love - gardening and tending to our rescued large black/brown shepherd/something mix named Teddy. Well, seems our dreams have changed. Late September I was diagnosed with a pancoast tumor and I do believe none of the doctors here had ever seen one before. All news I get is grim as well as conflicting. Doesn't even seem all my doctors are on the same team. I am doing radiation and chemo - started rad. 11/3 and chemo 11/5 so have had only 8 rads and 2 chemos. Chemo is Taxol and Paraplatin. The only doctor who tells me anything is my family doc. He says everything looks dismal and if, in January when I am scanned, everything does not come just perfectly, then my time is very short. Looking for encouragement since this is the only place I have found pancoast tumors at all. If I am not in the right spot on this site wish someone would let me know how to get to where I want to be. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted November 13, 2004 Share Posted November 13, 2004 Casey, Find us in NSCLC. or in general. There is a doctor in NIH who treated me successfully for a pancoast, was 13# on removal. I also had the chemo/rad approach, 25 rad and 2 chemo -cisplatin and VP-16- then 7 weeks later surgery, then 2 more chemo. That was 4 + years ago. Donna had chemo and rad but not together, and that was 7 years ago. Don't quit, don't give up. Get your doctors in touch with those doctors who know about pancoast -- for example Dr. David Schrump, (Thoracic)Surgery Branch, National Cancer Institute, NIH, Building 10 Room 2B05, 10 Center Drive,Bethesda, Md. 20892. Donna also knows of doctors where she is, Chicago? Minneapolis? And there are others. Pancoast can be a survivable cancer. Do your homework, and seek the best qualified oncologists, not the ones who are willing to say NO because they don't know any better. Keep us posted. PM me any time, or DonnaG anytime. We'd love to help, and the rest of the board is warm and supportive family. Stay in touch, and keep us posted. XOXOXOXOX Prayers always,, MaryAnn Quote Link to comment Share on other sites More sharing options...
ejpritz Posted December 22, 2004 Share Posted December 22, 2004 Hi. My mother had a pancoast tumor removed last spring. She is doing excellent, no sign of anything coming back. I did not even know she had his type of tumor until I had to go to war with her employer abour her disability insurance and read her medical records myself. I do not know much about the subject, just that she had one, has usrgery and is doing quite well. Hope this can give you some positive things to think about. Erin Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 22, 2004 Share Posted December 22, 2004 Kasey talked to my surgeon, at NIH, and had a bunch of tests last week. He thinks he can do successful surgery, so she comes back in two weeks for surgery, and I think some more tests next week. He originally thought surgery Dec 21, but the radiation was working really well, and he figured it could use another week or two to kill off more cells, give him a better margin. I met Kasey and her husband when they came down for tests. Hearing yes when you have been hearing no, no, no, no has got to be a good christmas present!! XOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
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