kreed70 Posted May 15, 2006 Share Posted May 15, 2006 My mom is getting cyberknife again this week for the spot where she had it last summer. It shrunk but didn't die. It is now pressing again on a nerve. Her onc mentioned maybe taking her off Tarceva and doing chemo again BUT SHE DIDN'T ASK ANYTHING ABOUT IT!!!!!!!!!! I'm trying to figure out why she nor my dad asked anything!! She wouldn't let me go to this visit as it was my first week of a new job and not wanting to upset her, did what she asked- big mistake! If she is being taken off Tarceva then I want to see about getting her into a clinical trial maybe. I've talked to people at the Cleveland Clinic for one on HKI-272. She is scheduled to see the onc in 6 weeks but maybe it will be sooner since she's getting cyberknife. UGH!!! Thanks for listening!! Kelly Quote Link to comment Share on other sites More sharing options...
henesey Posted May 15, 2006 Share Posted May 15, 2006 my mom in law never asked questions either. I made sure I went to every doctors appointment and was able to translate what the doctors were saying into plain english for her. Alot of the time they just don't understand what is being said to them and meds may make them even more confused. Be vigilant. Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted May 15, 2006 Share Posted May 15, 2006 Kelly - I know how frustrating this must be for you. You want to know EVERYTHING about your mom's situation and there is a link missing in the communication line. See if your mom will sign a release stating the doctor can discuss her visits and condition with you. This is very convenient (even for appointments you can make it to) as new questions always seem to pop up. And sometimes it is easier to talk to the doc about your mom if she is not there. (Not trying to be sneaky! In my mom's case I think there are things she does not want to know but feels better that WE know.) My mom has 7 kids and we take turns going with her. (And some of the early appointments MOST of us went with her.) When we relay the info to the other siblings someone always comes up with a question we should have asked. Mom's doctors have been very helpful in this area. (We don't all call the office (we don't want to overwhelm them), but we are all listed on her medical release form.) I understand that you cannot make it to all the appointments but if you can build a relationship with the doctor too it will help. I know my mom normally hears only what she wants to hear, and needs some coaching in some areas. When her doc stated she should get an MRI of the brain she was VERY much against the idea. She already had chest X-ray, CT scan and PET scan and she felt this was just one more test they did not need and that they had all the info they should need from the previous scans. She did not realize how easily this spreads to the brain (or chose not to hear that part). I KNOW if I had not been at that appointment she never would have had the MRI which has given us some peace of mind if only for a little while. My point being, if her doctors know you and you call to ask that might share something like this with you. Good luck with the cancer battle and with your new job! Karen Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 15, 2006 Share Posted May 15, 2006 Yes, it IS generational. We grew up in a culture where the doctor "knew everything" and you followed his lead without question. Also, there is a pervading attitude in that generation that what you don't know can't hurt you (wrong, of course). It is imperative in this day in time that the patient become part of the team and ask a lot of questions toward making sound decisions. Every visit to the doctor should be with someone who is not reluctant to ask questions and be informed. Be patient, but be firm. Don Quote Link to comment Share on other sites More sharing options...
Kasey Posted May 15, 2006 Share Posted May 15, 2006 Kelly, Sorry you don't know EVERYTHING you want. I don't understand the not asking questions mentality. I am OLD, BUT I am so vigilant in getting as much information as possible. Try making your list of questions and concerns and send it along with Mom. Would she follow your lead that way? I agree with getting Mom to sign for you to have access to her info. Can you sell it to her ~ that it's the best thing to do? You know I am lined up in your corner, Kelly. Wish there was more I could do for you. Love, Kasey Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 15, 2006 Share Posted May 15, 2006 try calling her Onc and explaining who you are and what you want. My mom and My sister did that when Mom was in Hospital. Both in Medical profession. Quote Link to comment Share on other sites More sharing options...
kamataca Posted May 16, 2006 Share Posted May 16, 2006 Kelly, I know your frustrations! I can't go to mom's visit this month (last week of school), and I'm a bit concerned about it. She lets me read all the lab reports, etc, but I know she edits out info from her conversations with the Dr. If I give her a list of questions I have in advance (in writing), she will ask those and report back, but I hate not being there. It's so hard to anticipate what to ask! That being said, I really struggle to remind myself that she does get to make the calls, and I have to respect that. At least at this stage she is 'with it' enough to do so, and I have to let her. Mom is a big fan of choosing to ignore certain things. It slays me, but I don't know what else to do. I am on the list for the Dr to give me info. I haven't called yet (he is a friend of ours, and has told me to call at home, but so far that feels intrusive), but I may this time. Sorry it gets so rough for ya! Kelly Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted May 16, 2006 Share Posted May 16, 2006 My mom didn't really ask questions either. I went to all her doc appointments until I got pregnant and was on strict bedrest, so I sent a list with her of questions I wanted answered. My mom was always SO trusting of people--maybe TOO much--and she didn't question her doctors at all. In fact, this is why she wound up on dialysis; I BEGGED her to switch internists because he let her BP stay out of control for literally years, and finally it was so hard on her kidneys she needed emergency dialysis or she would have died. I always told her, once I wasn't able to go to her appointments with her, to please not be intimidated by her onco. It was kind of a touchy subject between us. She claimed she wasn't, but when she'd get in there she said her mind would just get jumbled and she'd forget what she wanted to say. It frustrated me so much!! The thing is, you just never know if you're going to get a doctor who feels threatened by your expanse of knowledge from the web, talking to people, wheverever you may obtain it, or a doctor who is genuinely impressed with your being in the know--who believes that knowledge is power. Quote Link to comment Share on other sites More sharing options...
kreed70 Posted May 16, 2006 Author Share Posted May 16, 2006 Thank you everyone!! I feel better- still frustrated -but feeling better! I'll look into getting on "the list". I hae talked to her onc. right hand nurse (onc. nurse)and we dicussed her case but I need to talk to the onc. to know why she might be taken off Tarceva. Kelly Quote Link to comment Share on other sites More sharing options...
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