cmeandk Posted June 10, 2004 Share Posted June 10, 2004 Well- My father had his appointment with the doctor yesterday. Apparently they didnt do the CT of his pelvis(which was the whole idea behind it because of the severe pain) Instead the did just his chest and back. The Doc wouldn't give us a direct answer on anything. WHen I asked about how he was going to change treatment since the cancer has spread, he said he wasn't. I asked about the new Spots on his sternum and back and all he kept saying was " Bone leisions(?) are hard to read." Four times I asked the questions and four times I got the same reply. The Doc said that since the tumer in his lung shrunk from 3.5 to 2.2 the chemo was working and there was no need to change at this time. My father finishes this round of chemo Friday and will go for one more round on the 30th and THEN they will rescan and determine what if any changes will be neccessary. Is this normal behavior for a doctor to have? When we asked about the leg pain he acted like this was the first time we had mentioned it to him, when in all reality we mentioned it to him on the first date of treatment in March. Any suggestions? Sorry to ramble on, I just needed to vent Quote Link to comment Share on other sites More sharing options...
jamie Posted June 10, 2004 Share Posted June 10, 2004 How fusterating! I know you must be aggravated! Press the doctors for more answers, I know I hate being left in the dark! Also, what about radiation to the new spots? I would think they would have to change something since the circumstances have changed. Im no doc. though... check with the doc. and see what the plan is! Jamie Quote Link to comment Share on other sites More sharing options...
niececola Posted June 10, 2004 Share Posted June 10, 2004 Hi, From my 9 months of dealing with my mom's onc, this sounds very familiar to me. Some docs have a talent for explaining what is going on and some do not. I can tell you that my mom's onc has always said bone mets are difficult to read and from what I know, they only evaluate one spot to see if the chemo is working, so if the tumor in the lung is responding, that is a great thing! In defense of some docs, they see so many patients a day and I imagine it would be hard to keep track of everything, but this is not an excuse. My mom had a blood clot in her leg and is on meds for it and her onc had NO IDEA that she was being treated for that. And the thing that scares me is not that there was no info in her file on the blood clot, although we will find out why that is, but aren't her meds listed out, and shouldn't he recognize a blood thinner? Anyhoo, sorry for rambling. It is very important to be as proactive as you can, do your research and do not be afraid to ask questions. I asked my mom to let her onc know I would be calling with questions and that is was all right to discuss things with me. Keep a notebook of all your questions, so they are fresh in your mind when you go for a visit and so you have a diary of your conversations. But do not be afraid to speak up until you get the answers you need! Best of Luck, Denise Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 10, 2004 Share Posted June 10, 2004 What about a PET scan? If there is cancer in the bones, the area should light up. Some insurance companies don't like to pay for these without a good reason, but this sounds like a good reason to me. Best of luck! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Margaret Posted June 10, 2004 Share Posted June 10, 2004 All previous suggestions are good. What about also picking up the doctor's notes from the appointment and see what he wrote out about it. How great that the chemo is working! Margaret Quote Link to comment Share on other sites More sharing options...
cmeandk Posted June 10, 2004 Author Share Posted June 10, 2004 Thaank you for all of your suggestions, I will keep you posted!! bonescan and MRI SCHEDULED FOR 6/24/04 Quote Link to comment Share on other sites More sharing options...
paddy Posted June 12, 2004 Share Posted June 12, 2004 Hi. Margaret's suggestion of picking up the notes is a good one. When we are going to meeting with the oncologist to discuss the results of scans, I always drop into the hospital and get copies of the records, (and sometimes the xrays as well, ) so that I am prepared to ask the neccessary, (Goodness I wish we had a spell check on here!) questions. Dave doesn't read them, the less he knows about the bad things the better as far as he is concerned, but I really emphasize the good news. Hope you get things sorted out soon, All the Best, Paddy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 20, 2004 Share Posted June 20, 2004 I feel that I am in a bind when it comes to oncologists. They never tell you about your scans in detail because I think they don’t look, or read the things. They never have time because they are only in the office part time. Mine, have several chemotherapy selling stations run by extensive nursing staff. I ‘m in a small town and there are only two oncology places. I’m too weak to drive far, if at all and I'm alone. Two weeks ago, I changed my onc after several problems, which include a surgical removal of a SCLC axillary lymph node that could have been biopsied with a needle. The fact that the lump under my arm is growing, is the only indication I can trust that chemo is not working, since two CT scans have never reported the growing back of a 8cm tumor in my armpit. What do they see? My new onc is only in the near office one day a week. When I saw him he was going on vacation, so we never set up a plan, but he spoke about giving chemo one day a week. I’ll want to see a protocol . I maybe forced to change again or look to Hospice, because the power and greed of these Doctors, who as a group have conspired to hold back the number of U.S.A. medical students. unchanged for the last twenty years. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted June 20, 2004 Share Posted June 20, 2004 When I was first dx'd & talking to a therapist, he said, "You have learned your first lesson as a cancer patient - you must be your own advocate." In other words, the doctors are too busy too care and are most concerned with protecting themselves. In my case, they made a mistake on the biopsy as confirmed by MD Anderson. It wasn't until I was urged - I would say almost forced - by my med onc to have a fourth biopsy that I found out that his partner in the chemo office was the brother of one of the hospital paths in the lab that made the mistake on the biopsy!!!! I wheedled some inform out of the girls in the Path office on Friday that my report was basically ready at 8 in the morning but had not been signed off on since it was waiting for a second opinion but GUESS WHO? Yeppers, the pathologist who was the brother of my onc's partner. Gee, how surprising. They promised me they would call back by the end of the day even if the report wasn't done to let me know what was going on. Something must have happened because they didn't call back. I'm betting the report is accidentally going to go missing or won't be signed until AFTER my appt. with the chemo idiot on Monday. Yeah, I know - I sound paranoid. I have since started to look into where I can go to resolve this so other patients don't have to go through the same *****. I urge anyone who is having trouble to find the names of the administrators or CEOS of the path lab or hospital. If your chemo idiot is being an idiot, then get in touch with your insurance onc person (mine disappeared after the first week). Call this person and let them know NOT ONLY that you are dissatisfied but that you are contacting you're congressperson, senator, etc. Get the name of your congressperson and senator. Find their web sites. Look into reporting any difficulties. DO NOT SHUT UP. I know this is really difficult for those of us who are alone. I 'read' my x-ray but can not determine if the problem is the cancer is growing or if I am suffering from increasing radiation induced fibrosis (too many years working in various ERs gives me too little knowledge but enough to know something is wrong). That's why getting the results of the path report was so important. I shouldn't have had to wait the weekend and to tell you the truth, I will not believe the verbal report of my onc. It is sad that caregivers and patients often go through so much more sorrow due to the inefficency and fears and stupidity and lack of ethics in the medical field. We have to do whatever is necessary to fight back. Sorry, for the diatribe. I'm feeling kinda sick and am having trouble breathing. But honestly, we have to at least let our congresspersons, senators, and insurance people know how sucky cancer care is in our country. Do it for your self. Do it for the patients who will come after you. Speak up. Don't accept inferior treatment from an inferior doctor. Cat Quote Link to comment Share on other sites More sharing options...
Fay A. Posted June 20, 2004 Share Posted June 20, 2004 First thing Monday morning show up at the hospital where the path lab is and demand a copy of the report. If they refuse to provide this to you go to the hospital CEO and insist upon receiving a copy of the report. You can also check to see if they have a patient advocate rep, but I personally don't have a lot of faith in them, based on my personal experiences with a few. (Thank goodness all patient advocates aren't like the ones I've encountered.) Hope you are feeling stronger, Cat. Quote Link to comment Share on other sites More sharing options...
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