kate1621 Posted July 29, 2004 Share Posted July 29, 2004 Hello, My SO has sort of been diagnosed--pancoast tumor, stage 2/maybe 3. The testing has stretched over 2 months now, and are continuing. Is this normal? If not, what is, and how do I expedite this? Is it the doctors? The insurance company? Or are my expectations unreasonable? Also, the oncologist wasn't told by primary doctor that he has heart disease, and early emphysema. Is this normal? Can he reccommend treatment, and surgery w/out knowing this? It seems strange to me that a doctor can reccommend surgery w/out a complete history. I'm getting a crash course in his insurance hmo as well. I think we need to meet w/hospital financial department or something for help w/coordination. Can/should he start applying w/SSI though he's still working part time? He's in a lot of pain, and his job is physically demanding, can't see him doing this full time for much longer. The money situation is tight, and we need to figure out basic living expenses. For what it's worth, I apologize for barreling in like a steam roller. Thanks for being here, Kate Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 29, 2004 Share Posted July 29, 2004 My understanding is that with a Pancoast Tumor you start with chemo. I had this with radiation starting in Dec of 97'. In Feb of 98' I had my right upper lobe removed . Then in March I began Chemo again. THis was the plan from the beginning. I guess I was very fortunate. I was diagnosed, had every test known to man ( CT biopsy, Pulmonary Function, Bone Scan, Brain Scan, Even Thyroid scan and treatment, etc) and was in chemo and radiation by 2 weeks. I finished the 2nd round of chemo in April 98' and so far entertained my friend NED ( no evidence of disease) Kate, this disease is very hard emotionally. Most of us have needed help and antidepressents. Keep us posted. Your SO is more than welcome to join our Pancoast Tumor Survivor Club . Donna G Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 29, 2004 Share Posted July 29, 2004 Maybe I am wrong, but two months seems way too long--even for an HMO. You may need to contact a patient advocate. Try the American Cancer Society nearest you. I have found that the advocate assigned by the HMO certainly does not usually have the patient's best interest at heart. elaine Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted July 29, 2004 Share Posted July 29, 2004 Hi Kate, I'm not sure if 2 months is would be considered along time or not. I know from experience it seems like its taking forever. I got sick in 6/02,confirmed cancer 7/02, saw surgeon 8/02, inoperable 9/02, wasn't referred to a onc. until end of 9/02, started rad. middle of 10/02, hematology oncologist lost my file. I had to leave several messages for him, even had my rad. onc. finally call them to get them to setup an appointment for me. This is suppose to be a good cancer center. You really need to stay on the doctors. Ask many questions and don't assume anything. I know beleive you probally should take a tape recorder with you each time you vist the doctor as there is so much to take in at one time. Best wishes, Dee Quote Link to comment Share on other sites More sharing options...
Hebbie Posted July 29, 2004 Share Posted July 29, 2004 Personally, I had a chest x-ray, CT Scan and Needle Biopsy to confirm the diagnoses all within 1 week. I was in surgery 3 weeks later, so 1 month after diagnoses, I was at home recovering from surgery and gearing up for chemo/radiation. It seems that 2 months is a long time to wait, but I have heard similar stories here. If you are not comfortable with this endless testing period, see if you can ask the doctors when an appropriate treatment will be scheduled. I don't think that is unreasonable to ask! Quote Link to comment Share on other sites More sharing options...
chloesmom Posted July 29, 2004 Share Posted July 29, 2004 My timeline was more like Heather's -- took about a week for diagnosis, and it was a few weeks to get on surgery schedule, but it was only a month from my first suspicious test to being through with surgery and recovering so that I could start chemo 6 weeks later. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 29, 2004 Share Posted July 29, 2004 We don't leave to chance what doctors may or may not communicate to each other. I have both Lucie's and my medical information on the computer, including medical history, medications, allergies, etc. and whenever we go to a doctor, we bring an updated printout. We found it to be very helpful to us and to them, and we have been complimented by some for it. It leaves nothing to chance. Don Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted July 29, 2004 Share Posted July 29, 2004 My timeline was delayed by the emergency surgery I had, by maybe a month. The newer protocol is the double chemo and radiation at the same time -- I had 25 days of radiation, with Cisplatin and vp16 on the first 5 and 8th day, and then on the last 8 days, five days and then Monday. I have heard that this is the new standard for pancoast treatments. I mean the chemo and radiation, not the emergencysurgery. I certainly was in the thick of things by the third week. I had a 14 x 9.5 x 6 something cm tumor, and it was dead on removal. It was a pretty effective treatment. Make sure the surgeon knows about his heart, he'll find out in the presurgical physical but best no surprises at this point. My final diagnosis was a 3A, almost a 3 B. I couldn't pick up stuff either, but I did go back to work 10 months after diagnosis, 5 1/2 months after surgery. Wore me out, but I could work. Good luck to you and your SO, hope you get the other issues straightened out. Keep us posted. XOXOXOXOXOXOXOX MaryAnn Prayers always Quote Link to comment Share on other sites More sharing options...
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