norme Posted October 14, 2003 Share Posted October 14, 2003 Hi Everyone, its me again... Got back the Pet results today while visiting the Onc Chemo Dr. Nothing on the Pet showed up regarding the right lung. That is great news. That means that report is saying no cancer in the right lung as prior scans results were saying and the Dr's report was saying. It is probably radiation fibrosis as the orig report stated. What did show up was an enlarge Lymph node in the abdomen and the pelvic area. It measured between 4 - 6 cm. Am having a scan done Thursday and if it shows possible cancer, will have a biopsy per the dr and me. Then, after much discussion with the Dr regarding all the inconsistencies in his prior scans from April/03 thru 9/03 the Dr agreed to have all his scans looked at by one Radiologist at the hospital. I had rounded them all up yesterday before going to see him today for that reason. I don't know what it will prove but still do not feel comfortable regarding who is right and who is wrong and why don't help either. Need to know who really saw what and why others did or didnot... Also have gotten Buddy an appointment with his lung dr tomorrow morning to tell me what is in his right lung for sure. Am first taking her the scans before dropping them off at the hospital. I can't believe I got him an appt so fast. I told the appointment operater at the drs office what was happening and she said she would put him in tomorrow morning. The nightmare isn't over yet but we are closing in on it... EVERYONE, PLEASE READ YOUR MEDICAL REPORTS. If the least little thing doesn't look right, do something about it. If I hadn't stepped in on Buddy's he would still be getting chemo for LIVER, LUNG.and BONE mets that he evidently does not have. Actually, chemo can't really help bone mets. To much chemo can also kill. PS: Forgot to tell you that when the DR came into the room today, he first told Buddy he didn't presently need any chemo treatments, that everything in the past was looking good for him. He sat down by me with his medical records and I with Buddy's and told me I did a terrific job at detecting the problem areas and asking for new scans. I looked at him and said "this was not my job but yours". Then he said well, this and that could have happened and was trying to clear any misconceptions (sure) regarding the liver then I said to him, but you told me he also had lung cancer in his right lung and he again tried to tell me he really didn't say that. That it was probably radiation fibrosis all along. I held my ground and told him no way, you did tell me that you believe he had lung cancer in his right lung now. After he left the room the light bulb went off and here it is showing in his own notes in Buddy's file, - -- lung mets.. WATCH YOURSELF OR YOUR LOVED ONE EVERYONE..... WE ONLY GET ONE TIME AROUND...WE ARE NOT CATS. Quote Link to comment Share on other sites More sharing options...
Debi Posted October 15, 2003 Share Posted October 15, 2003 Norme... What wonderful news that Buddy's right lung is clear!!! You go girl.... were you always a fighter or has this ordeal turned you into one?? Either way, you need to be real proud of yourself and I'm sure Buddy is glad that your in his corner!! Keep going Norme...I know its tiring but what a great job you are doing. I should sic you on my doctor!! Good luck to Buddy on his scan Thursday!! Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 15, 2003 Share Posted October 15, 2003 Oh, Norme, What I wouldn't do to have someone like you to help me through all of this! It is good news... I know that it isn't ALL good, but it's mostly good. We've got to grab hold of the good and hang on for all we're worth. I'm praying that the lymph node is easily dealt with. Much admiration coming your way, Fay A. Quote Link to comment Share on other sites More sharing options...
Guest Cheryl Schaefer Posted October 15, 2003 Share Posted October 15, 2003 Good new and congratulations for pushing so hard and continuing to do so. I agree! Everyone had to question any and all reports and diagnosis and get second or third opinions. It made a big difference for my husband. Aloha, Cheryl Quote Link to comment Share on other sites More sharing options...
Ry Posted October 15, 2003 Share Posted October 15, 2003 Whoa Norme, kickin' a__ and takin' names!!!! Listen if you ever want to come out of retirement you could have a great career as a patient advocate. We also had a similar situation where a doctor tried to tell us we misunderstood. I think they are all so scared of being sued they just can't say "oops". Quote Link to comment Share on other sites More sharing options...
rinksgal Posted October 15, 2003 Share Posted October 15, 2003 Great News Norme, I glad you put the doctor on the spot. Don't they know what they do to the patient and caregiver when they give the wrong news out. I mean come on! They need to make sure what they say is correct and not just assume.. I mean poor buddy Went through unnecessary treatment!! But nothing to be none about that now.. Maybe somehow it also helped him..I think Ry is right, doctors are so afraid of being sued that they can't admit they made a mistake. I'd rather hear a doctor say I'm sorry or that they did make a mistake, then to try and blame you saying you misunderstood, or send a nurse back in like they did with us saying I guess they've decided its not mets, when just 2 min. ago they said it was and he left the room..But we second guessed him and he left and read the report and thought opps, but couldn't tell us himself!! Poor nurse had to come and tell us... In my opinion it wasn't her job.. I'll keep praying for more good news for Buddy!! Take Care Norme!! You are really a go getter!! Buddys a very lucky man to have you in his corner!!! Christy Quote Link to comment Share on other sites More sharing options...
cathy Posted October 15, 2003 Share Posted October 15, 2003 Norme, I am completely lost. I must have missed some of your post, or I am not reading this one right. Are you saying Buddy never had lung cancer and they gave him all this treatment that he didnt need? Did he have the fibrosis before, or this a new development? Quote Link to comment Share on other sites More sharing options...
norme Posted October 15, 2003 Author Share Posted October 15, 2003 Thanks everyone, am glad some of the nightmare is over. Went to the lung spec today and she set Buddy up with a new chemo onc. She also took charge of all the scans and is having them read by someone she trusts to read correct. She spend about 45 minutes with Buddy looking at his scans I brought with us, his medical reports on the scans and looked somewhat shocked and asked if we wanted to change onc. She set him up to see new one on 10/21. will see about the lymph node then. That is our present worry. Debi, yes I have always stood up for what I feel is right. thanks Ry, Cheryl, and Christy for your concerns. Fay, I sure hope you have someone in your corner. If I lived by you I would be in your corner too. Cathy, Buddy had two tumors in his left upper lobe and they had to removed the whole left lobe. He had 5 out of 7 lymph nodes show mets at the time of the operation, he had brain mets a few months later and that was it. He never had bone, liver or right lung mets as far as we know from the recent scans but his lung dr is having them read by a person she has a lot of confidence in. She said it is an art to reading scans and not all radiologist are good at it....she said she always looks at the lung scans plus has the radiologist look too. She wants to make sure she agrees with the findings herself. She looked at all of Buddy's. Quote Link to comment Share on other sites More sharing options...
carlton Posted October 16, 2003 Share Posted October 16, 2003 Hi Norme- So glad i read your post wish i had you come with me to my oncs apt the other day. I seem to be having the same problem all the ct scans are being read by different radiologists and differ in opinions.Pet scan said no big uptake for the liver ct scan says two new lesions to the liver so onc is going with the ct scan opinions and starting new chemo for it. It is so frustrating not to truly know who to beleive. Have this terrible edema also and no one has a answer as to what is causing it i have heard it is from the chemo to lymph nodes in the abdominal are ato i really don't know what is causing it mean time i go on suffering with it every day. Just very frustrating. Thanks for listening. Wish i had you going to apts with me. I guess i am not that assertive. Carlton Quote Link to comment Share on other sites More sharing options...
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