Lisa O Posted April 28, 2004 Share Posted April 28, 2004 I'm sorry Fay. In my line of work, I am not at all surprised by medical error but that doesn't make it any less frustrating. It would be nice if ONE radiologist would review the films. It is so stressful waiting for results even when they are read quickly and done correctly the first time. I am sorry this is happening. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 28, 2004 Author Share Posted April 28, 2004 Took the films to someone I trust. The brain tumor is right where it's always been. The adrenal tumor is exactly the same as it has been for the past several years..no growth, no change in shape, no change in density. Subcarinal mass is right smack dab where it has been for several months now. I have an explanation for why the previous report was done the way it was, and I will be speaking with the Head of the Radiology Department -in person-tomorrow. Someone is in deep Kim Chee. No easily accessible tumor, so no GVAX trial for me (yet). I guess next week I start radiation and chemo. Onward!!! Fay A. PS I haven't had a guest shot on Stephen King's new television series. But maybe I'll write to him and ask. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 28, 2004 Author Share Posted April 28, 2004 Took the films to someone I trust. The brain tumor is right where it's always been. The adrenal tumor is exactly the same as it has been for the past several years..no growth, no change in shape, no change in density. Subcarinal mass is right smack dab where it has been for several months now. I have an explanation for why the previous report was done the way it was, and I will be speaking with the Head of the Radiology Department -in person-tomorrow. Someone is in deep Kim Chee. No easily accessible tumor, so no GVAX trial for me (yet). I guess next week I start radiation and chemo. Onward!!! Fay A. PS I haven't had a guest shot on Stephen King's new television series. But maybe I'll write to him and ask. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 28, 2004 Author Share Posted April 28, 2004 Took the films to someone I trust. The brain tumor is right where it's always been. The adrenal tumor is exactly the same as it has been for the past several years..no growth, no change in shape, no change in density. Subcarinal mass is right smack dab where it has been for several months now. I have an explanation for why the previous report was done the way it was, and I will be speaking with the Head of the Radiology Department -in person-tomorrow. Someone is in deep Kim Chee. No easily accessible tumor, so no GVAX trial for me (yet). I guess next week I start radiation and chemo. Onward!!! Fay A. PS I haven't had a guest shot on Stephen King's new television series. But maybe I'll write to him and ask. Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted April 28, 2004 Share Posted April 28, 2004 Just caught this thread..........how did I miss it????? I'm glad that you FINALLY got an accurate reading on your scans. I GUESS I'm sorry that you don't have a mass that is accessible.........sounds funny. (Kind of like us all praying that you have a mass large enough in the arm pit ) Wishing you the very best on your journey! I will be praying for you. Angie Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted April 28, 2004 Share Posted April 28, 2004 Fay, I am glad you got a report from someone you rust and certainly glad you are "having a word" with the radiology chief. That was certainly a confusing report. When I compare my various reports it sounds like they are talking about dofferent patients and I have mentioned this to the radiation oncologist. Didn't get a reply that made much sense. My best wishes for your treatment. God Bless Quote Link to comment Share on other sites More sharing options...
mayos Posted April 29, 2004 Share Posted April 29, 2004 Fay.....It's great you have someone you can trust....but it's sad you've been put through the ringer over this. At least now you can make your treatment decisions based on true stats. Perhaps when things calm down for you we can get together on private email....I also have an adrenal adenoma. It's on my right side and was pronounced benign about 3 yrs ago....before my lung cancer was found. Maybe we could compare notes down the road. Please add me to the long list of cyber pals who are praying for you Fay. Quote Link to comment Share on other sites More sharing options...
J.C. Posted April 29, 2004 Share Posted April 29, 2004 Fay, Glad you found somebody that can read. Have the words, but leave also a written note with it, it pays in the long run, will make docotrs more careful with the results (if they can read) Hang on, you are doing all you can. We are in there praying for you. xoxo J.C. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted April 29, 2004 Share Posted April 29, 2004 Fay, Glad you've got that straightened out. Onward!! Prayers... XOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Melinda Posted April 30, 2004 Share Posted April 30, 2004 Fay-- I don't know why I didn't come across this string earlier--I'm sorry. My emotions are so confused that I don't know whether to be happy or sad at your "new" reading at this point (the only clear emotion I have is frustration on your behalf). My gosh--you DON'T need this. Please point out to that person that the last thing you need with everything else you are battling is such additional STRESS!!! ARGGGGGGHHHHHH! Melinda Quote Link to comment Share on other sites More sharing options...
Carleen Posted May 2, 2004 Share Posted May 2, 2004 Boy Fay, I don't know what to say. Like Melinda I am confused. I was glad when I thought it was possible for the tumor to have disappearred, but I'm more happy to know that your finally have a radiologist who can read scans, and you have a clear picture on which to make your decisions. I am so angry and upset to hear of the rampant incompetence that you and many of the others on this site keep having to deal with. Go give them Hell Girl, and show no Mercy. Carleen Quote Link to comment Share on other sites More sharing options...
teresag Posted May 22, 2004 Share Posted May 22, 2004 Dear Fay, I never meant to sound insensitive to the distress associated with the great uncertainty this disease generates. I'm sorry if I sounded that way. I just wanted to make sure no one was jumping to the worst conclusion, (or as Tiny eloquently said, I wished to be "sagacious and temperate") I'm sorry that it now appears that you were right from the start. You never did say how the head of radiology responded, or if he/she did. What happened? Quote Link to comment Share on other sites More sharing options...
Fay A. Posted May 22, 2004 Author Share Posted May 22, 2004 Didn't start radiation or chemo. Scans were re read (same scans) and the brain tumor is there, but stable. The adrenal gland tumor is growing, so that's why they are suspicious now. The subcarinal lymph node is still present and appears to have grown when compared to previous scans. A soft tissue density on the bronchial stump not mentioned in any previous report is now reported to be growing compared to January studies. There are now multiple lymph nodes in the left internal mammary artery that are growing compared to previous studies. There is now a large right internal mammary lymph node not previously reported. There are soft tissue densities near the sternum. We're back to trying to find an easily accessible node to use in the GVAX trial. Or maybe looking into the Tarceva Trial if I can't do the GVAX. If that fails then I'll start chemo, just not sure which ones yet. So...It's a gamble...I think that for me the best bet is to try to get into the GVAX. If that fails then try for the Tarceva/Celebrex trial. If that fails then try the chemo with some spot radiation. You weren't insenstive, Teresa....I was HYPER Sensitive. And I"m sorry, too. Much Affection, Fay A. PS I try to be fair, too. I received an apology for the way things were (mis) handled, and a detailed addendum to the original report. No one wants bad news...but in this situation I have to have accurate information or I can't possibly make good decisions about my health care. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 23, 2004 Share Posted May 23, 2004 Fay, I am sorry to hear that you have the increased growths, but will be praying that you can finally get into the GVAX trial. Keep us posted, please. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Nushka Posted May 23, 2004 Share Posted May 23, 2004 Fay, I will be keeping you in my thoughts and prayers that you get in the Gvax trial and that it works well for you. It is very upsetting to hear the news you just got. I admire you for not giving up and going at this with the attitude that you will beat this beast. With that frame of mind you have a great chance at doing just that. Keep your chin up....and keep us in touch. Nina Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 23, 2004 Share Posted May 23, 2004 What us up with GVAX? I was told the trial was closed as in they had chosen the people at this time? Told this about three weeks ago when I was insisting that they brain mets be conclusively ruled out so that I could try to get in the trial.... Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 23, 2004 Share Posted May 23, 2004 Fay, You are an admirable and courageous woman. My prayers are going out for you - an entire boat load of prayers. May the Divine be with you. Cat Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 23, 2004 Share Posted May 23, 2004 Elaine, http://www.cellgenesys.com/opentrials-lung-cancer.shtml I know that info on web-sites can be out-dated. Hopefully, this is accurate. Cat Quote Link to comment Share on other sites More sharing options...
Fay A. Posted May 23, 2004 Author Share Posted May 23, 2004 Elaine, Your signature states you have NSCLC, but what type of NSCLC do you have? The type of Lung Cancer (and the stage, and your overall health) determines which of the clinical trials are available. The trial I am looking in to is specific to those who have a Bronchioloalveolar component to their cancer. The other thing is that the trial may have closed at facilities in your area, but may be open at other sites. Or the person who provided the information about the trial being closed may not have had accurate information. Quote Link to comment Share on other sites More sharing options...
teresag Posted May 24, 2004 Share Posted May 24, 2004 I found two vaccine trials at NCI for NSCLC; maybe that explains the confusion. There is GVAX and there is the new CG8123 trial. Link to the latter trial: http://www.cancer.gov/clinicaltrials/vi ... hid=920584 Fay, ultrasensitive is okay. You are amazing. God Bless, Teresa Quote Link to comment Share on other sites More sharing options...
Guest Phyllis Posted May 24, 2004 Share Posted May 24, 2004 Lord Fay, I don't know how you stay sane. You are a better person than me. I have had delayed reactions with chemo. I would show progressive disease and go off the drug, but during the short chemo break end up with shrinkage. Everyone is different. I know the radiological surgeon I am dealing with at the moment prefers to read his own films rather than relying on a report. You may get a better answer with this other guy. Hang in there. You are so special and strong and have been through so much. I always figure if some of you have gone through all of this and are still kicking than I can too. Take care. Quote Link to comment Share on other sites More sharing options...
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