Donna G Posted August 28, 2003 Share Posted August 28, 2003 I certainly appreciate all the input and suggestions regarding Steve's oncologist not being truthful. I read each post many times and thought about each one. I followed the links given and read everything. Thank you!! I don't know why we thought today's oncologist (Dr. C) visit should be any different........ Last week, Dr. C said that maybe Steve had cancer in the air sacs.. and I asked if another bronchoscopy could be done and he said NO, not unless massive bleeding had begun. We went straight to the pulmonologist (Dr. N.) After yesterday's bronchoscopy, Dr. N said he was going to send a report STAT to Dr. C so he would have it in time for today's visit. When Dr. C came into the room (after we had to wait an hour and half), he was reading Steve's folder. He asked Steve how his cough was and Steve said he still had it and he said that he had decided that he should see Dr. N again and have another bronchoscopy!! Steve said he had one YESTERDAY and Dr. N sent him a report. Just then, Dr. C was called to the desk and he put Steve's folder on the table, still opened to the page he was reading when he entered the room. Of course, we looked at it and it was the PULMONARY REPORT - dated TODAY! On top of it was a handwritten note from the pathologist that said that the specimens submitted were positive and in the process of being classified. When Dr. C returned to the room, he immediately went into explaining the chemo worked rapidly at first on Steve because it tackled and killed small cell lung cancer, but the 3cm piece that didn't dissolve because it was probably non-small cell lung cancer, which wouldn't respond to chemo. He said that he will treat the 3cm remainder with radiation, but it would probably be 2 weeks before he could get an appointment with a radiologist for a consultation. hmmmm That's about the time we'll be leaving for Sloan-Kettering. Steve asked if the blocked bronchial tube Dr. N observed (unchanged since March) was the cause of his cough and he said ABSOLUTELY - NO DOUBT ABOUT IT. He went on to say the airway is totally blocked in one area.... It's reassuring to know that he knows that without even knowing he had a bronchoscopy or saw a report 10 minutes earlier. For weeks he's been brushing the cough off as asthma or post nasal drip.. Last week, Dr. C was to have gone over the PET SCAN results with us, but lost the report and hadn't looked at the films.... After that, we got the films, as we're gathering the required documents to take to Sloan-Kettering. Two days ago, Dr. Cs office called me and said that they called for the films and were told we had checked them out. She asked if we could drop them off at Dr. Cs office, as he wanted to go over them with us today. I took them yesterday, but he didn't even mention the films nor the report today, either!! Upswing of today's visit - all blood counts were back to normal and NO MORE PROCRIT!!! Just more frustrations........... We're going to Sloan on September 15 and are on a cancellation call list, too. We're also going to try to see another oncologist here before going to Sloan.... September 15 seems so far away when time is so crucial. Quote Link to comment Share on other sites More sharing options...
Karen Posted August 28, 2003 Share Posted August 28, 2003 Please do try to find a very involved oncologist for a second opinion and maybe to take over Steve as a patient. Holy COW! Does Dr. C even realize how inept he appears when you look at all the inconsistencies in his "care". I just wonder if some of them are just too overwhelmed to handle their loads. I just don't get it. I know there are a lot of unknowns with cancer, but you should be on top of the easy stuff like knowing there is an important report in a folder that you need to refer to BEFORE you walk in to discuss a patient's condition. A question that comes to mind as well, do folks with SCLC also get NSCLC concurrently? It seems that nobody's profiles show anything like this on here. Anybody got any thoughts on that? I know when my FIL's cancer recurred in other areas, they just said it was still SCLC but that it had metasticized to those spots. I am sensing your sarcasm here. he said ABSOLUTELY - NO DOUBT ABOUT IT. He went on to say the airway is totally blocked in one area.... It's reassuring to know that he knows that without even knowing he had a bronchoscopy or saw a report 10 minutes earlier. For weeks he's been brushing the cough off as asthma or post nasal drip... Good for you not to have blind faith in this guy! Wishing you the continued strength you are displaying now and praying for a better ONC situation for you ASAP!!! Karen M. Quote Link to comment Share on other sites More sharing options...
gail p-m Posted August 28, 2003 Share Posted August 28, 2003 Donna Just wanted you to know you're not alone in oncologist "hell". I don't have time to write our whole story right now but we have an appt. at Sloan Kettering on L.I. but not until Sept. 30th to get things "straightened out". We are also on the cancellation list. Then we are off to find another oncologist too. You know the first time I met the guy i had qualms. Should have listened to my gut. Good luck to you and yours! I do know how you've been feeling -- really. Gail P-M I Quote Link to comment Share on other sites More sharing options...
Ann Posted August 28, 2003 Share Posted August 28, 2003 I have talked to so many people since Feb., 2002 when Dennis was diagnosed with SCLC, that have similar stories to yours, Donna. I really believe that most oncologists are so frustrated and overwhelmed by SCLC that they are just grasping at straws. Thank goodness we had a very agressive oncologist , Dr. Omar Kayaleh, at M.D. Anderson - Orlando. He never gave up on Dennis and was there for us until the end. He was very straightforward with us from the beginning but nevertheless, he kept trying new things. I do believe that some oncologists just hear the words SCLC and throw their hands in the air. You are so on the right track by being proactive!!! Don't lose faith! There are so very many good doctors out in the world and I'm sure you will find the right one for Steve. You are in my thoughts and prayers. I know how frustrated you are feeling right now! Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 28, 2003 Author Share Posted August 28, 2003 I agree that the current onc seems very incompetent and "not with the program." In the beginning, he wasn't like that. He was very professional and seemed to have everything "on the ball" - but when you have just found out you have LC - you're receptive to ANY type of hope of treatment. He did get Steve in a clinical trial, for which we are grateful. Today, I will get the biopsy report.... Then, I will call Sloan-Kettering and see if I can get Steve seen earlier than mid-September. If not, we will try to see another onc in the meantime. A friend said to me today that if Dr. C came into the examination room, reading the report that he said he didn't even have, then he didn't have time to absorb the contents or form a plan of action. I agree. Steve's last chemo treatment was July 18 and he hasn't even had a port flush.. They forgot to schedule it and he has his first one tomorrow - 6 weeks after his last chemo! Dr. C's office just now called.... The appointment with the radiologist is September 11. As the rest of you are doing - ALWAYS PRAYING FOR A MIRACLE!!! Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted August 28, 2003 Share Posted August 28, 2003 Dear Donna, I'm so relieved to hear you're going to Sloan. I'm confident you won't run into any dunderhead doctors there! They'll be on the ball, will work out a game plan and get Steve on the healing path. Have faith. Joanie Quote Link to comment Share on other sites More sharing options...
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