beckyg Posted October 1, 2003 Share Posted October 1, 2003 I (finally) got a copy of the report from my PET scan from June. I read the title at the top of the report and began to panic, as it said, "Purpose: Restaging Squamous Carcinoma of the Left Vocal Cord." Of course I was thinking, I have adenocarnioma in my lung. Is this a new primary? Why did no one tell me about this? I didn't even know there was anything wrong with my vocal cords. I read the report. Nowhere else is there any mention of my vocal cords. The title has no bearing on the report. Evidently no one bothered to proofread. It did mention uptake all over the place, but only the lung was listed as most likely cancerous. The oncologist (and the report) said most of the rest was probably because of lingering effects of radiation and trauma from surgery. It did indicate that the tumor showed evidence of damage from the treatments, which was welcome news--the big shot lung cancer specialist in Houston led me to believe that the treatments hadn't done anything at all and that it had actually grown. I know these doctors are busy and that I am not their only patient, but I get so frustrated with how long it takes some of them to do anything. I contacted a doctor in San Antonio about RFA to my lung. He now has my CT scans and I am waiting for him to deliver an opinion about whether I might be a candidate. In some sense, I think, it has only been two weeks, but my goodness, those two weeks are precious to me! Thinking of you all, Becky Quote Link to comment Share on other sites More sharing options...
Snowflake Posted October 1, 2003 Share Posted October 1, 2003 Becky, Something I have learned through all of this: I'm an office professional and have worked as a receptionist while between jobs. I DO know that any wait in an office, etc., is not the fault of the receptionist (I worked for a doctor once, NEVER again) and that it really does no good to vent to a receptionist (believe me, I KNEW the doctor I worked for was an *ss..) BUT, when dealing with nurses, doctors, etc., KEEP CALLING. Make sure that YOUR name is one associated with a CASE, not just an insurance check! While waiting for radiation to begin (a second consult to kick it in), I was given "emergency in family, Doctor left early" (okay, understandable, I have a child, too...), THEN it was "MD Anderson never sent the report" (funny, my oncologist had it, and had sent ME a copy...so at THIS juncture, I gave his nurse my copy)...THEN it was "busy case load, will try to SQUEEZE YOU IN".... (Hmmm...do I really want to see a doctor too darn busy to take my MONEY?)... I think they had a "critical detector" as all of this took place in two weeks. They finally 'squeezed' me in on a Friday which my spouse and I had decided was D-Day (if they hadn't found time by then, I was "shopping" elsewhere). Got my tattoos, cradle, etc., and started right in with radiation... And the doctor NEVER forgot my name! I also apologized to his nurse early on for my aggressiveness BUT wouldn't change it. I'm not saying cuss up a storm, just keep pushing 'til you get what you need - or get it elsewhere! Hang in there, I'm pulling for you! (Boy, this club SUCKS! LOL - HATE being on the team, but I love the players!) Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 1, 2003 Share Posted October 1, 2003 Becky, The kind of error is inexcusable. Our very lives depend upon the information contained in these reports. Decisions about what treatments we qualify for and will receive are based upon that which is stated in these reports. Please contact the Director of the Hospital in writing, and tell him that not only do you want the report corrected, but that you want his personal assurances that this will not happen again. If the specialist in RFA has this report, and he hasn't seen you, how does he know that you DON'T have a new cancer of the vocal chords with a different histology than that which is in your lung? This is unbelievable.... I am so sorry. You know, in addition to needing advocates for research dollars and support for those of us with Lung Cancer we also seem to need some kind of oversight advocacy group that can bring pressure to bear on the medical profession to insure that what we pay for (tests, consultations, etc.) are TRUE and ACCURATE. I was very upset when this kind of thing happened to me several weeks ago. I am horrified that it happened to you. Fay A. Quote Link to comment Share on other sites More sharing options...
beckyg Posted October 1, 2003 Author Share Posted October 1, 2003 Snowflake--the RFA doctor being slow is a battle I am having directly with the doctor. He is just choosing not to respond to me at the moment, so I guess I am about to start pestering him more often. When I first contacted him through the office, he responded directly to me by e-mail. We have exchanged e-mails a couple of times, but he has been silent since my husband dropped off my CT scans. Fay--the RFA doctor only has CT scans, so this error on my PET report won't affect that, but your point is well taken that the error could have caused me some trouble. At the moment I am just relieved that it is an error--I'll worry about fixing it next. My local doctors are great about quick responses, I think largely because we are in a relatively small town and they live here. If I call either the local oncologist or the radiation oncologist needing to be seen or with a question or whatever, things normally happen that day. It's only when I deal with the big shots in the big cities that I have trouble getting anything done. Quote Link to comment Share on other sites More sharing options...
rinksgal Posted October 1, 2003 Share Posted October 1, 2003 I continue to be amazed at all of the errors that are made out there..I understand people make mistakes and that doctors are human but they are playing with our lives and our loved ones!! This scares me to death, and thats why we have to stay on top of our or our loved ones treatments. We have to know whats going on!! Good Luck to all of you!! Christy Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted October 2, 2003 Share Posted October 2, 2003 Beck, Reports are so scare and confusing to read. Mine has said "uptake- possibly metastisis shown in lymph node, new mass not previously seen on scan...etc." My reports had me trrified and in tears. All my doctors were not worried about these findings saying that the "new mass is benign and was seen on previous scan...just a different angle" , also "lymph node is reactive, but that doesn't mean cancerous." I never trust just one, and will get the opinion of my chemo onc rad onc, and surgeon. I pray that you hear something back on the RFA soon!!! Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted October 2, 2003 Share Posted October 2, 2003 I think it is inexcusable to have errors that directly effect us so much. We have experienced some of this with my mom's reports and I end up wondering about compassion. I know they have so many patients, but this is my mom!! I am sorry you had the scare. I am hoping you will receive some answers soon regarding your RFA. I am also hoping you are getting some relief from the shortness of breath. You are in my prayers. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted October 3, 2003 Share Posted October 3, 2003 I agree-it is wrong to let mistakes slip by the wayside. All of us are someones mom, sister, wife, hubby, etc. We are important and those Drs better wake up and re-read the reports!! Quote Link to comment Share on other sites More sharing options...
norme Posted October 3, 2003 Share Posted October 3, 2003 Hi Becky, Don't wait, maybe he never received the reports. Maybe they were lost in the mail. Call him or his office and verify they have them then ask for a date when he will call you back. Tell them how you feel during this waiting process, that you can't think of anything else wondering if you can have RFA. Good luck. don't wait for them.... Quote Link to comment Share on other sites More sharing options...
beckyg Posted October 3, 2003 Author Share Posted October 3, 2003 Norme, I know they received the CT scans--my husband delivered them to the office in person. I have called and sent e-mail today. Evidently the office is closed on Fridays. I will attempt to pester them again on Monday. Becky Quote Link to comment Share on other sites More sharing options...
norme Posted October 3, 2003 Share Posted October 3, 2003 Put a rubberband around your wrist to remind you at 9am monday morning. It's you life, not their time..... Quote Link to comment Share on other sites More sharing options...
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