Renate Posted March 11, 2008 Share Posted March 11, 2008 When I made my appointment to see the Oncologist, I was told I must register before I see the Doctor, since I am a new Patient. I said I am not a new patients since I had cancer( different cancer) 3 years ago.I had to register anyhow. All I was asked was to sign papers that Emory University, namely the Winship Cancer Institute could use blood samples and or tissue samples for research. I signed not thinking of anything being behind it. While I was waiting to meet my new Lung specialty Oncologist who just joined Winship, a nurse entered the room with a stack of papers. Told me, that Emory University is doing a study and asked if I could sign the Consent to be in the research.It would take about 1 - 1 1/2 hours to fill out the questionaire every 4 weeks. I said she could leave the papers with me and I would read it over and give it back to her next time I am here for my treatments. She agrred and left. Title of the project is: Predicting Cancer-Related Pain Intensity and Onset. Sponsor Name: Nell Hodgson Woodruff School of Nursing. I am assuming this new Doctor wanted me to be in the study, since I had no pains or symptons. Then I met the Doctor, he did not say anything about this research to me at all. After that his Nurse came in and asked me to follow her into her office, she wanted to explain the side effects about chemo. All of a sudden the door opened and a second research Nurse enters the room, like in an ambush. She interupted us in middle of our conversation.This time I did not sign any Consent, but told her she could meet me next time I am here.She explained she will draw blood pre dose, end of infusion and 2 hours after the end of infusion. I said I am overwhelmed and asked her to leave. The study title of this research: Evaluation of Patient Characteristics as Predicors of Acute Treatment Toxicity in Patients Receiving Taxane Based Chemotherapy. I read the entire package, called her, left message to call me back. She did not wanted to tell her to pound sand. I was very angry at this point, since I realized that this new Doctor was behind this whole thing and did not say a word to me. Last Monday I had my first Chemo and the first trial Nurse came to see me at the chemo Suite, she also wanted a blood sample. I did ask her: How was I selected to be in the rial. The anwser was: Your Doctor. I did complain to her, that this was not handled in a professional manner and that I am very disappointed about the Doctors bedside manners. I am so angry and feel the Doctor is using me for his own advantage. I am ready to write him a letter and tell him how I feel. My Husband says no, you have to deal with him. What would you do in my case? Thank you for listening. Renate Quote Link to comment Share on other sites More sharing options...
Muriel Posted March 11, 2008 Share Posted March 11, 2008 There probably isn't much to be gained by telling the doctor how you feel - other than you'll probably feel better for telling him. Apparently that's the way they do things there. What probably happened is that you signed the research consent form and your name was included in a list of willing participants. So, you were contacted by a representative from several different research projects being conducted at that time. You can always say no. If they try to talk you into it, just be more forceful in saying no. If it were me - and I've had chemo twice - I would say NO to the second study, which apparently would require you to stay another 2 hours after the infusion was completed. And, unless you have a port, believe me, you wouldn't want to do this. The first study doesn't sound very appealing to me either. Are they telling you that you must participate in these studies in order to receive treatment? If so, run as fast as you can to another Onc. Either way, if you aren't happy with the situation there, find another Onc. I changed Onc.s in the middle of chemo because I didn't like the doctor or his staff. It worked out fine. (Find a new one before telling the old one you are leaving.) Best wishes. Muriel Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 11, 2008 Share Posted March 11, 2008 Renate - I agree with all of Muriel's points. And, you are right - it doesn't sound like it was handled very professionally. That was your first chemo and I know how apprehensive you were - and then to have nurses bursting in on other ones - sounds like they were being bullies!!! Plus, you shouldn't have to wait nother 2 hours after a chemo to leave. We all know that research is a good thing - but if its not handled well, then noone wants to do it!!! Wishing you well - Patti B. Quote Link to comment Share on other sites More sharing options...
bikergirl Posted March 11, 2008 Share Posted March 11, 2008 I know when I signed the consent form for the clinical study there was also a place to drop out whenever I wanted to. Do not let anyone coerce you into anything, you have enough on your mind without having to worry about that. I know the chemo you are having takes up pretty much of the day and you are mentally and physically exhausted by the time it is done and just want to get home. If they confront you just simply tell them you do not want to participate and to please leave you alone. It doesn't sound like they have your best interest in hand right now. I kind of felt like that when my clinical study was cancelled because the fourth drug in the study (which I did not randomly get choosen to take thank goodness) caused a lot of serious side effect problems. It seems I am treated differently now, not so much clinically but the way the converse and dote over you when you are in the study for them. Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 11, 2008 Share Posted March 11, 2008 I would be up in arms about now! THis is your Body! Your Decision! Your Treatment! and Your Health! and Your Future! You should have been asked about both of these and explained in detail all of the points of these trials. IF Debs Onc had done this I can not imagine what I would have done in the situation! remember the opening line of this thread!!!! THis is your Body! Your Decision! Your Treatment! and Your Health! and Your Future! No doctor should coerce anyone into a trial without first explaining the trial and the circumstances and conditions of the trial. A Clinical trial is done by Patient VOLUNTEERS!! not Doctors volunteering their Patients! ALso there is more than one oncologist in Atlanta I Bet!! Quote Link to comment Share on other sites More sharing options...
Renate Posted March 16, 2008 Author Share Posted March 16, 2008 I have a fever running for a few Days, thus I am late in responding. Thanks for all your advice.I will tell my Onco when I see him on 3/24 for my second Chemo treatment and see how he reacts. I am also looking for an other Oncologist. I have one more question. Do you see a regular Oncologist or one that is specialized in Lung Cancer. Mine is specialized in Lung Oncology. Thank you, Renate Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 16, 2008 Share Posted March 16, 2008 What I have found through my my journey so far is that it is best for me to give my doctors or nurses feedback when they have disappointed me. Not that I necessarily want different ones, more because I think they need to hear feedback from a patients perspective. Most times they have done something without thinking about it from that perspective. So far, all have appreciated hearing my feedback. And it can be done very diplomatically. I have found it makes me feel better as well, because if I don't say something then it can bother me for a long time...and we sure don't need things bothering us when we are fighting this thing! Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 16, 2008 Share Posted March 16, 2008 DEb also had a lung Oncologist!! Quote Link to comment Share on other sites More sharing options...
Muriel Posted March 16, 2008 Share Posted March 16, 2008 My previous Oncs (3) treated all kinds of cancer. My current one specialized in lung cancer. At MDAnderson the oncs are specialized. Muriel Quote Link to comment Share on other sites More sharing options...
Renate Posted March 16, 2008 Author Share Posted March 16, 2008 Muriel & Randy, Glad to hear, Deb did & Muriel is seing a Lung Onco. I thought maybe I could look for a just General Onco. Where I go here in Atlanta it is the Winship Cancer Clinic. They are all specialized, you could not see just any Onco. Renate Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 16, 2008 Share Posted March 16, 2008 Renate- My onc specializes in lung cancer. I think thats so important!! Hugs - Patti Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 16, 2008 Share Posted March 16, 2008 Renate, my Onc Doc handled all cancer's! But he knew just as much about lung cancer as any other Onc Doc did. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 17, 2008 Share Posted March 17, 2008 Muriel: I go to MD Anderson and didn't even know the oncologists are specialized there. All I remember is someone telling me she was the head of the medical oncology department. So you think she's a lung specialist? Come to think of it the husband of someone on this site goes to her too so maybe she is. I like her alot but just on principle would really like it if she specializes in lung cancer. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Muriel Posted March 17, 2008 Share Posted March 17, 2008 Judy, Sorry. I'm wrong. Glad you caught that. Not all Oncs treat all kinds of cancer, but the one I see treats patients with several types of cancer - so, no, I don't see a Dr. who specialized in lung cancer. The husbands of two of our members see the same dr. we do. I chose her because she was recommended by the others. Muriel Quote Link to comment Share on other sites More sharing options...
cat127 Posted March 17, 2008 Share Posted March 17, 2008 If you wish to make a complaint that will be heard, you can complain to the IRB - institutional review board. Any clinical studies conducted at a site would be overseen by this board. They would take any complaint, such as feeling like you were forced into participating or you were not 'adequately consented', very seroiusly! Quote Link to comment Share on other sites More sharing options...
Renate Posted March 17, 2008 Author Share Posted March 17, 2008 Thank you Cat 127, I will first talk to him, next Monday, when I start my 2 round of Chemo and see how he reacts. Quote Link to comment Share on other sites More sharing options...
BB33301 Posted March 20, 2008 Share Posted March 20, 2008 Hi Renate: I think it is important to let the Doctor knwo you feel uncomfortable about the process. I too had Squamos Cell Anal cancer (daignosed 2/2007)and unfortunately was diagnosed Stage IV because I didnt want to question the various doctors who told me I had hemrhoids. I have a question, is your Lung Cancer a net new cancer or is it mets from the Squamos Cell Anal cancer since the lungs is one the main places it goes? Did they do a biopsy and determine the origin of it-meaning if it was the squamos cell anal cancer cells? I am trying to research and see how many people get mets and the treatments that work. Thanks and best of luck! Beth Quote Link to comment Share on other sites More sharing options...
Renate Posted March 20, 2008 Author Share Posted March 20, 2008 Hi Beth, So sorry to hear you have to go through this ordeal of treatments. To answer your question, no it is not the same cancer, it has not spread. The Lung Cancer I have is called "Adenocarcinoma" I had a biopsy done and this is what it revealed. I hope you could find a support Group. It was not easy to find somebody with this type of cancer. I did find one person, her cancer was more advanced than mine and she is doing well. We both had our treatments at about the same time. 1/04-2/04 Where are you right now, it has been a year since you were dignosed. Are you not finished with your treatments. If you have more questions just ask, I am here to help. Renate Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 20, 2008 Share Posted March 20, 2008 Believe it or not Adenocarcinoma is the most popular type of Non Small Cell Lung cancer, there for the most researched and most treatable! Quote Link to comment Share on other sites More sharing options...
Renate Posted March 20, 2008 Author Share Posted March 20, 2008 Randy, I did not know that. Thanks for telling me, it gives me hope. Have a nice Easter Weekend. Renate Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 20, 2008 Share Posted March 20, 2008 Currently, the most common type of lung cancer is the adenocarcinoma.[5] This cancer usually is seen peripherally in the lungs, as opposed to small cell lung cancer and squamous cell lung cancer, which both tend to be more centrally located.[6] The adenocarcinoma has an increased incidence in smokers, but is also the most common type of lung cancer seen in non-smokers. Adenocarcinoma of the lung tends to stain mucin positive as it is derived from the mucus producing glands of the lungs. Similar to other adenocarcinoma, if this tumor is well differentiated (low grade) it will resemble the normal glandular structure. Poorly differentiated adenocarcinoma will not resemble the normal glands (high grade) and will be detected by seeing that they stain positive for mucin (which the glands produce).[7][[1]] -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Renate Posted March 21, 2008 Author Share Posted March 21, 2008 Hi Randy, Thanks for the education, howover, this is all above my head. You know so much about LC. I have to learn a lot, just getting into my second round of Chemo next Monday. Can I please ask you what the following means. The Path Report states the following. Cells in the current case are poorly differentiated and do not show unequivocal squamos features. TTF-1 is positive, consistent with poorly differentiated adenocarcinoma of pulmonary origin. Please help me out on this. Thanks again. Renate Quote Link to comment Share on other sites More sharing options...
cat127 Posted March 21, 2008 Share Posted March 21, 2008 I'm sure others agree, no need to apologize. It is a lot to take in, and it is like a foreign language. That's my sister's joke about me - "well, she speaks the lingo." A few answers. Your cancer is described as "poorly differentiated". This is a term that is used to describe how much like a normal cell (well differentiated) or like a cancer cell (poorly differentiated) the cells look like. It is also not uncommon to have "mixed histology", to have tumor cells that exhibit both squamous and adeno characteristics. It kinda reads to me like the histologist stained the cells for squamous cells, and yours did not stain as squamous cells would. They then stained for something known as thyroid transcription factor-1, and studies have shown that this is predominantly exhibited by adenocarcinoma. So the results of the different staining was that the cells were far more cancer than normal and with the characteristics of adenocarcinoma. I have no idea if that helps or muddies the waters more. Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 22, 2008 Share Posted March 22, 2008 If you are muddled on Cats response you can access our ask the expert forum and it should take you top OncTalk Our resideent oncologists site and copy and paste your question. Doctor West is our resident oncologist and can answer more technical questions than I can. Hugs and Prayers RandyW Quote Link to comment Share on other sites More sharing options...
Renate Posted March 22, 2008 Author Share Posted March 22, 2008 Hi Cat & Randy, Now I have a much better understanding what well & poorly differentiated cells means. I am also very relieved they checked for squamous cells, since I had that type of Cancer in the anus canal in 2004 and was afraid it had spread. Even though I was told it is a new cancer, now I know for sure. Thanks to both of you. Happy Easter Renate Quote Link to comment Share on other sites More sharing options...
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