HER2 Support Group Forums - View Single Post

Chelee · 07-22-2006, 04:04 PM

Tom, I can certainly tell you have been through enough of what I have been experiencing from reading your reply. You are SO right about these doctors being arrogant and GUARDED. The only thing that bothers me is I FEEL like I am the ONLY one down there that will keep pushing and talking to third parties till I get answers or the care I need. (In fact, they all tease me and call me the trouble maker.) Why...because I ASK questions and want answers about my own health. That makes me a bad guy?

Do people really just get worn down and give up and let these doctors get away with NOT answering them? Seems these doctors wouldn't do this as often if they had to answer for it more often? But I do know from personal experience...it is very hard going through this entire bc journey...both the phyical and emotional part of it. Let alone the treatment & have much energy to push hard enough to get the answers we as patients HAVE to have to make informed decisions. We are fighting for our lives...isn't that enough...then on top of that we have to fight with them to get them to find out whats going on or to get necessary test & scans done. (I don't literally fight with them...but you know what I mean.) Actually I have been far to nice...even my husband tell me that is half my problem. (Maybe it is...guess that needs to change.)

Tom, I really like the strategy you layed out here for me. I have been asking for ALL my lab results, PET scans...even copies of the DISKS so I could have them for my own records. I recently got ALL my medical records from the day of my surgery which THEY (My doctors) were suprised to find out i got ahold of. Thats what made me have even MORE questions? I found LOTS of things in those reports that they NEVER mentioned to me and they should have. I am going to do it the way YOU said too. I will tell ALL my doctors I want a copy of all test results when they arrive no matter what they are. Lab, CDs, scans, Rads report, you name it. (I haven't been doing it that way...and that way is MUCH BETTER.)

As to writing things down...that one I have wired. LONG before bc...I have always written everything down. I have a journal with every page date and have always wrote down details of my family life..when we went some where to important things like what was said at my doctors appts. I have journals going back 18 years. I have told them I WRITE everything down..so you think they would be more concerned. I can always see how un-comfortable they seem when I get in their office. I pull out my folder with my paper and pen in hand & I write down everything. I have told them all I documet everything. I always have my list of questions in hand which I NEVER get answered. My doctors are so good at talking without saying anything.

But that is where you said to learn all the TALK. To talk their language. Now that I have NOT done...but I will. That even makes alot of sense. That I can do since medical issues have always interested me. Like they were concerned about my lungs...so NOW i will address my lungs as a Pulmonary problem...instead of lung problem. I have a second CONSULT Monday morning with my Rad doctor because he did NOT address my issues at my last appt. Boy will I be ready this time.

I have a little extra reading to do to get ready for it now...but it will be well worth it.

I like the way you said to ask....NO, INSIST my doctors explain in detail. Tom you really have given me some great advice here! I can't tell you how much I appreciate it. It comes at a valuable time to me especially since I have this appt Monday with that Rad doctor. This Rad onc doc I am seeing was looking at me last time like he was listening...but he WASN'T. And that could cost me my life. I kept telling him I am MISSING RIBS on that right side...I can't have anymore LUNG damage. (Or should I say *Pulmonary problems*.)

I think I have tried so hard NOT to make waves, or make them mad at me...that is is causing me more of a problem like my husband keeps saying. This week I will attack this differently and let you know how its going.

Thanks so much for your in site Tom. I really believe your post will help me alot. Its such a SHAME that doctors have so many patients these days that they can't spend more then 5 to 10 minutes with you IF your lucky.

Thanks again Tom...I really appreciate you taking the time to help me out. I need all the help I can get...I have been at the end of my rope lately. I didn't know what else to do/try? Now I do.

Chelee

07-22-2006, 04:04 PM	#9
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Tom, I can certainly tell you have been through enough of what I have been experiencing from reading your reply. You are SO right about these doctors being arrogant and GUARDED. The only thing that bothers me is I FEEL like I am the ONLY one down there that will keep pushing and talking to third parties till I get answers or the care I need. (In fact, they all tease me and call me the trouble maker.) Why...because I ASK questions and want answers about my own health. That makes me a bad guy? Do people really just get worn down and give up and let these doctors get away with NOT answering them? Seems these doctors wouldn't do this as often if they had to answer for it more often? But I do know from personal experience...it is very hard going through this entire bc journey...both the phyical and emotional part of it. Let alone the treatment & have much energy to push hard enough to get the answers we as patients HAVE to have to make informed decisions. We are fighting for our lives...isn't that enough...then on top of that we have to fight with them to get them to find out whats going on or to get necessary test & scans done. (I don't literally fight with them...but you know what I mean.) Actually I have been far to nice...even my husband tell me that is half my problem. (Maybe it is...guess that needs to change.) Tom, I really like the strategy you layed out here for me. I have been asking for ALL my lab results, PET scans...even copies of the DISKS so I could have them for my own records. I recently got ALL my medical records from the day of my surgery which THEY (My doctors) were suprised to find out i got ahold of. Thats what made me have even MORE questions? I found LOTS of things in those reports that they NEVER mentioned to me and they should have. I am going to do it the way YOU said too. I will tell ALL my doctors I want a copy of all test results when they arrive no matter what they are. Lab, CDs, scans, Rads report, you name it. (I haven't been doing it that way...and that way is MUCH BETTER.) As to writing things down...that one I have wired. LONG before bc...I have always written everything down. I have a journal with every page date and have always wrote down details of my family life..when we went some where to important things like what was said at my doctors appts. I have journals going back 18 years. I have told them I WRITE everything down..so you think they would be more concerned. I can always see how un-comfortable they seem when I get in their office. I pull out my folder with my paper and pen in hand & I write down everything. I have told them all I documet everything. I always have my list of questions in hand which I NEVER get answered. My doctors are so good at talking without saying anything. But that is where you said to learn all the TALK. To talk their language. Now that I have NOT done...but I will. That even makes alot of sense. That I can do since medical issues have always interested me. Like they were concerned about my lungs...so NOW i will address my lungs as a Pulmonary problem...instead of lung problem. I have a second CONSULT Monday morning with my Rad doctor because he did NOT address my issues at my last appt. Boy will I be ready this time. I have a little extra reading to do to get ready for it now...but it will be well worth it. I like the way you said to ask....NO, INSIST my doctors explain in detail. Tom you really have given me some great advice here! I can't tell you how much I appreciate it. It comes at a valuable time to me especially since I have this appt Monday with that Rad doctor. This Rad onc doc I am seeing was looking at me last time like he was listening...but he WASN'T. And that could cost me my life. I kept telling him I am MISSING RIBS on that right side...I can't have anymore LUNG damage. (Or should I say Pulmonary problems.) I think I have tried so hard NOT to make waves, or make them mad at me...that is is causing me more of a problem like my husband keeps saying. This week I will attack this differently and let you know how its going. Thanks so much for your in site Tom. I really believe your post will help me alot. Its such a SHAME that doctors have so many patients these days that they can't spend more then 5 to 10 minutes with you IF your lucky. Thanks again Tom...I really appreciate you taking the time to help me out. I need all the help I can get...I have been at the end of my rope lately. I didn't know what else to do/try? Now I do. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.