teetlee Posted February 7, 2003 Share Posted February 7, 2003 I tried to post this topic but I lost it somehow. I'm a low-tech person and my computer always gets the "best " of me. Anyway...I saw my onc. yesterday. My x-rays showed no change. Yeah! As a matter of fact they have always showed no change since my dx in Dec. 2000. My dr. is really baffled by this. Says he has never seen this in all his years of experience. What I have is not acting like LC. I was dx. last Apr. with paraneoplastic rheumatic syndrome...big words for arthritis. My rhematologist says it was caused by either the LC or the chemo. Seems the only way to get rid of it or to make it easier to treat, is to get rid of the cancer. I'm stage 3b and inoperable. So I asked about radio frequency ablation. I have a friend (one of his patients) who had this done on her liver last year and it worked. I've been doing a lot of research on RFA. It's less invasive than surgery. My dr. thinks this is a "real" option for me Surprise! Surprise! He wants to do a Pet Scan first to see if the cancer is still active. The last one I had was Aug. 2001. I'm almost afraid to think of what this could mean. So has anybody here had RFA or heard about it? Has anyone heard or know of someone whose cancer just stayed the same for years? I sure would appreciate any feedback. so glad I found this site. Quote Link to comment Share on other sites More sharing options...
Debaroo Posted February 7, 2003 Share Posted February 7, 2003 Teetlee, I don't know of anyone who has had RFA, but have read some pretty impressive things about it. I am so happy to hear that you are a freak of nature (which is meant as a compliment), and that your cancer is not acting "normal"! Its great to throw the Docs a curve ball now and again, maybe it makes them question the "statistics" that they seem so used to relying on and also question whether they should assume that they know what will happen next. Life is unpredictable, so why shouldn't cancer be? Good luck with the RFA, please keep us posted. I have been looking into it for my dad, extensive NSCLC, and would be very interested in knowing more about it from the point of view of someone that has had it done. Keep us posted, and I'll keep a good thought, make that many good thoughts, for you!! Take care, Deb Quote Link to comment Share on other sites More sharing options...
john Posted February 7, 2003 Share Posted February 7, 2003 Teet, You probably have a low grade tumor since it does not respond to chemo. Do a search on the web for carcinoid. You also may want to get a Octreoscan. It is a nuclear scan that detects cancer cells kind of like a PET but it is slightly different. The carcinoids can grow slowly for years and usually do not respond to chemo The doctor should have had a pathologist look slides if a biopsy was done. Was there a biopsy? I am not a doctor so I would ask your doctor these questions. Good luck Quote Link to comment Share on other sites More sharing options...
john Posted February 7, 2003 Share Posted February 7, 2003 My aunt is a pediatrician in NYC. She found the names of people doing Octreoscans. One happened to be in New Orleans at Tulane. I can get you the name if you want it. I think the person also does RFA. Rfa does seem very promising since it is not very invasive and most people I have read leave the next day after the procedure John Quote Link to comment Share on other sites More sharing options...
teetlee Posted February 7, 2003 Author Share Posted February 7, 2003 thanks for the encouragement, Debaroo. I will keep you posted. John, thank you for the information. As a matter of fact my onc. is sending my biopsy slides to M. D. Anderson for a pathology report. The doctor who did the rfa on my friend is from New Orleans, so maybe this is the same person. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest mmmiiiirrrell Posted February 8, 2003 Share Posted February 8, 2003 there are only a few cancer clinics that do rfa on lung cancer, it is still a ground breaking thing. for liver cancer it has been around awhile. that said, you just have to find the clinics and doctors that do it. i do think md anderson is one. and sloan kettering might be another, is this the one in minnesota, there is one there also. good luck to you. Quote Link to comment Share on other sites More sharing options...
ginnyd Posted February 8, 2003 Share Posted February 8, 2003 My husband's thoracic surgeon asked him if he would allow for RFA during his lobectomy. As it turned out, he wasn't a candidate for it. Don't know why. We had decided not to do it before they told us that. It was to be done only as part of research, not as the treatment. This was at Fox Chase Cancer Center in Philadelphia Ginny Quote Link to comment Share on other sites More sharing options...
Ry Posted February 11, 2003 Share Posted February 11, 2003 Teetlee, At one time Tiny posted extensive info on most the hospitals in the US doing RFA. It was on the old board and I think it came to this one, but I may be confused and it was the "2nd" board. Anyway, you can e-mail Tiny and ask for the info if it is not on this board. Best wishes, Ry Quote Link to comment Share on other sites More sharing options...
Cary Posted February 11, 2003 Share Posted February 11, 2003 This should be a pretty complete list. DR. SEWELL: THE UNIVERSITY OF MISSISSIPPI 601-815-3983 DR. KEN MURPHY: SEWNE UPSTATE MEDICAL UNIVERSITY SYRACUSE, NY CONTACT: 315-464-7439 (DOROTHY MORSE, RN) MORSED@UPSTATE.EDU (LUNG & LIVER RADIOFREQUENCY ABLATION) DR. SCOTT FOSTO & DR. GREGORY GRAVES: SUTTE GENERAL HOSPITAL SACRAMENTO, CA CONTACT: 916-454-6905 (MARY FORANS, OFFICE MANAGER) 2800 L. STREET SUITE 2000 SACRAMENTO, CA 95816 (LUNG & LIVER RFA) DR. MURRY ASH: UNIVERSITY OF TORONTO TORONTO, CANADA CONTACT: 416-586-5186 (LUNG & LIVER RFA) DR. STEVE ROSE: UNIVERSITY OF CALIFORNIA SAN DIEGO SAN DIEGO, CA CONTACT: 619-543-7964 (LUNG & LIVER RFA) DR. MARK LE QUIRE: BAPTIST EAST HOSPITAL MONTGOMERY, AL CONTACT: 334-244-8398 (WANDA FIELDS, RN) OR 334-288-4624 (OFFICE) (LIVER RFA ONLY) DR. JASON DOREY: BAPTIST MEDICAL CENTER MONTGOMERY, AL CONTACT: 334-277-5695 JASONHDOREY@CS.COM (LUNG RFA) DR. RON ZAGORIA: WAKE FOREST UNIVERSITY WINSTON-SALEM, NC CONTACT: 336-716-2471 (MAUREEN) (LUNG, LIVER, BONE & KIDNEY RFA) DR. BERNARDO REBEIL: CARONDELET ST. MARY'S HOSPITAL TUCSON, AZ CONTACT: 520-740-6017 JREBEIL@AOL.COM (LUNG, LIVER & BONE RFA) DR. DAN BROWN: WASHINGTON UNIVERSITY MALLINCKRODT INS***UTE OF RADIOLOGY-ST. LOUIS, MO CONTACT: 314-362-2900 (LIVER & BONE RFA) DR. BLAIR CORNELL: CARITAS MEDICAL CENTER LOUISVILLE, KY CONTACT: 502-361-6764 BLAIRCORNELL@INSIGHTBB.COM (LUNG & LIVER RFA) DR. CHARLIE NUTTING: GOOD SAMARITAN HOSPITAL P***NIX, AZ CONTACT: 602-239-4689 CHAZWE@AOL.COM (LUNG & LIVER RFA) DR. KEN STOKES: INTEGRIS BAPTIST MEDICAL CENTER OKLAHOMA CITY, OK CONTACT: 405-945-4232 (LUNG & LIVER RFA) DR. AUBREY PALESTRANT: DEER VALLEY HOSPITAL P***NIX, AZ CONTACT: 602-200-9339 (LUNG & LIVER RFA) DR. BRUCE LIN: RUSH COPLEY MEDICAL CENTER NAPERVILLE, IL CONTACT: 630-499-2491 BLINMD@HOTMAIL.COM (LUNG & LIVER RFA) DR. MICHAEL COHN: MEMORIAL REGIONAL MEDICAL CENTER HOLLYWOOD, FL CONTACT: 954-986-6317 MCOHN02@WORLDNET.ATT.NET (LUNG, LIVER, BONE & KIDNEY RFA) Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted February 12, 2003 Share Posted February 12, 2003 Teet, I just wanted to congratulate you on the fact that your cancer doesn't behave like lc normally does. That is great!!!! Good for you!! I don't know anything about the thing you mentioned, sorry. Just sending some prayers your way that your cancer never grows. I hope the radio frequency abulation helps to zap the cancer out. Quote Link to comment Share on other sites More sharing options...
Guest Cynthia Posted March 9, 2003 Share Posted March 9, 2003 My name is Cynthia, am I am new to the board. I was dx with adenocarcinoma of th right lung in April of 2002. I am a life long non-smoker.I had a partial lobectomy in April of 2002, followed by chemo of taxol/carboplatinum. In November I still had 2 tumors remaining, but they were smaller. Ihad heard about Dr. Patrick Sewell, and his RFA procedure. I was a candidate, and underwent this proedure in Jan. of 2002.It is done while you are under general anesthesia and inside a CT machine. While it is less invasive than traditional lung surgery, it still carries risks. I did experience some post-op complications...including bleeding in my lung and I did require 2 blood transfusions. I underwent another round of chemo with taxotere/gemzar, and was then declared in remision, in April of 2002 I firmly believe that this procedure has prolonged my life. My lastest CT showed posssible new tumors, and Im currently being evaluated for another RFA. But, I still feel grateful fo the work Dr. Sewell has done for me. Anyone with lung cancer, or with renal or liver cancers(for thee types he uses cryo-ablation) should disscus this with their doctors. I am very grateful I found this board, thanks for listening. Cyntia Quote Link to comment Share on other sites More sharing options...
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