You should leave this doctor and find someone who gives you the time to explain the results in a way that you clearly understand. My oncologist has failed to properly explain much detail to me, and is very aggressive, so I have decided to go thru another doctor who talks in positive ways, explains what is going on and who actually cares.
It is so important to feel empowered about what is going on so you can weigh up the information and be more involved in decision making. You can't be empowered if your doctor doesn't have the time to explain this to you.
Some docs try to withhold info just so they can sway you to follow their regime (preferably without questions asked!). Mine did, so I looked elsewhere.
Good luck, Dave
Forums
Re: Doctor patient communication
dianaiad your reply struck a nerve ( are you in Oregon?) - I too belong to Kaiser Permanente and am expecting a call from my oncologist next week -I have Oncology appointments every 4 months but canceled the one last month due wanting to avoid the Flu carriers - I called down to cancel my appointment & the nurse there ask if I would like a phone appointment -I said sure when & how about the set up for my blood draw prior- she said? you do ?blood tests? prior to seeing the Dr? - "yes I do"
ok your appointment is mar 5 - - I waited till feb 28 and went down to the Lab (14 mi.) hobbled in & told the young lady that I was there for blood tests for Oncology Dr _ _ _ _ _ _ she looked at her computer and ran off several slips (never said a word) - I went back and my favorite tech was there (good needle man) but he had trouble finding a vein ?? so I allowed him to stick (Ouch) the back of my hand ( big veins) we got the job done and I headed home - later that night on my computer I got 1 test result back -it was not from my oncologist ?? but my primary care Dr. ? The next morning I get 1 message from the Lab on a PSA test ordered by Urologist who did my prostrate ?? NOTHING from Oncology - I tried calling the Lab and was told they would no longer take outside calls ? So I called oncology & did the usual dance of phone death with several different folks - repeating my story -which by now was about the length of "GONE WITH THE WIND" the last fellow who was Supposed to be checking to see if they could use the previously drawn blood ( he hadn't)- finally says " We have you all set up for a blood test on Monday as the Dr likes fresh blood ??? - I told him its been 5 months now since my last appointment & blood letting and I don't think a couple of days one way or another would make or break this deal & as I have already been to the lab once on the 28th -with great difficulty ( don't walk to well due to damaged feet from Dex treatment) and I did not think I felt up to making a second trip , he said ITS YOUR HEALTH - I told him don't lay this crap off on me -this is not the first time this has happened other wise I wouldn't be so aggravated .
I'm getting pretty fed up with this BS but as one fellow ask earlier - I am tied to Kaiser as that's who I have my medical plan with. NG
ok your appointment is mar 5 - - I waited till feb 28 and went down to the Lab (14 mi.) hobbled in & told the young lady that I was there for blood tests for Oncology Dr _ _ _ _ _ _ she looked at her computer and ran off several slips (never said a word) - I went back and my favorite tech was there (good needle man) but he had trouble finding a vein ?? so I allowed him to stick (Ouch) the back of my hand ( big veins) we got the job done and I headed home - later that night on my computer I got 1 test result back -it was not from my oncologist ?? but my primary care Dr. ? The next morning I get 1 message from the Lab on a PSA test ordered by Urologist who did my prostrate ?? NOTHING from Oncology - I tried calling the Lab and was told they would no longer take outside calls ? So I called oncology & did the usual dance of phone death with several different folks - repeating my story -which by now was about the length of "GONE WITH THE WIND" the last fellow who was Supposed to be checking to see if they could use the previously drawn blood ( he hadn't)- finally says " We have you all set up for a blood test on Monday as the Dr likes fresh blood ??? - I told him its been 5 months now since my last appointment & blood letting and I don't think a couple of days one way or another would make or break this deal & as I have already been to the lab once on the 28th -with great difficulty ( don't walk to well due to damaged feet from Dex treatment) and I did not think I felt up to making a second trip , he said ITS YOUR HEALTH - I told him don't lay this crap off on me -this is not the first time this has happened other wise I wouldn't be so aggravated .
I'm getting pretty fed up with this BS but as one fellow ask earlier - I am tied to Kaiser as that's who I have my medical plan with. NG
-
Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Doctor patient communication
I'm sorry to hear that you are also having a bit of a frustrating time with Kaiser, m'friend. I have actually been pretty happy with Kaiser, until now. I'll admit that I'm feeling more than a bit frustrated at the moment, though!
...............not quite as much as I was yesterday with Windows 8 and being utterly unable to access the internet and ending up having to reformat my hard drive and re-installing everything, but, well...perspective is everything, I guess.
...............not quite as much as I was yesterday with Windows 8 and being utterly unable to access the internet and ending up having to reformat my hard drive and re-installing everything, but, well...perspective is everything, I guess.
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Doctor patient communication
Hi Nipon,
I too am in Oregon but thankfully only have MGUS. I get followed every 6 months at OHSU by a myeloma expert, Dr. Emma Scott who is very good with her patients, she sits down and spends as long with you as you need. A copy of all your labs even your complete BMB is always avaliable online and printed out for you. I have noticed that for some tests they are sent by OHSU to a Kaiser lab. I think that maybe OHSU and Kaiser have a relationship. Maybe Kaiser would allow you to go to OHSU to get treatment? I don't know what part of OR you are in, OHSU is in Portland.
I too am in Oregon but thankfully only have MGUS. I get followed every 6 months at OHSU by a myeloma expert, Dr. Emma Scott who is very good with her patients, she sits down and spends as long with you as you need. A copy of all your labs even your complete BMB is always avaliable online and printed out for you. I have noticed that for some tests they are sent by OHSU to a Kaiser lab. I think that maybe OHSU and Kaiser have a relationship. Maybe Kaiser would allow you to go to OHSU to get treatment? I don't know what part of OR you are in, OHSU is in Portland.
-
tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: Doctor patient communication
I made a formal complaint to Kaiser about how they would post only NORMAL blood test results. Their response was “this is Kaiser’s policy”. I said “I’m asking you to pursue a policy change”. It went nowhere. My oncologist at Kaiser was OK and I believe I got the care I needed at the time. However, once I became eligible for Medicare, I dropped Kaiser and chose a supplemental plan that gave me access to a multiple myeloma specialist and any local oncologist . I ended up changing local oncologists because he treated me like your doc is treating you. I then found a caring compassionate local oncologist who respects my multiple myeloma specialist and follows his suggested protocol for me. I now have the perfect team in place. If you are locked into Kaiser, I would recommend you find another oncologist in the Kaiser system. If you have a local support group in your area, you can ask fellow patients who they recommend or contact the IMP and see what they know. Getting and staying in remission is dependent on the physical protocols AND keeping our stress levels down. I am doing much better physically and emotionally now that I took control of how I wanted to be treated. Try to be tactful but don’t be afraid of hurting your doctor’s feelings if need be. Many of them have an attitude that they are more important than the patient. Let him know you won’t accept that attitude and if they can’t or won't change, find another. There are lots of good ones out there.
-
torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Doctor patient communication
Thank you, everybody, for posting and being encouraging. I'll admit to being frustrated...and yes, stressed. I really don't need a doctor deciding for me, without knowing anything about me, that I'm 'scaring myself with Google."
To be honest, I'm quite possibly better at researching things using the internet than he is. (grump) It is, after all, part of what I do for a living! So when I'm told to 'stay away from the internet,' I raise a virtual eyebrow (since I can't raise just one eyebrow in real life) and put on my best supercilious 'how dare you' look.
Trouble is, I just end up looking like a dyspeptic Mrs. Santa and it gets me nowhere.
I don't have a local support group, and the only doctor who could give me a second opinion in the Kaiser system has the office next to the guy I've got. I COULD drive 75 miles, and if push comes to shove, I might just do that. However, I'd much prefer being able to simply look at the tests, ask 'what does this mean?' and get a straight answer, not 'why obsess over one test?" and "It's the total picture that counts" and "don't let the internet scare you."
"Don't let the internet SCARE you? " What am I, five? ARGGGHHH.
Thank you for allowing me to vent.
Diana
To be honest, I'm quite possibly better at researching things using the internet than he is. (grump) It is, after all, part of what I do for a living! So when I'm told to 'stay away from the internet,' I raise a virtual eyebrow (since I can't raise just one eyebrow in real life) and put on my best supercilious 'how dare you' look.
Trouble is, I just end up looking like a dyspeptic Mrs. Santa and it gets me nowhere.
I don't have a local support group, and the only doctor who could give me a second opinion in the Kaiser system has the office next to the guy I've got. I COULD drive 75 miles, and if push comes to shove, I might just do that. However, I'd much prefer being able to simply look at the tests, ask 'what does this mean?' and get a straight answer, not 'why obsess over one test?" and "It's the total picture that counts" and "don't let the internet scare you."
"Don't let the internet SCARE you? " What am I, five? ARGGGHHH.
Thank you for allowing me to vent.
Diana
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Doctor patient communication
Hello!
I am sorry to hear that your choices are limited in the Kaiser you are at- not sure where you are located, but if you are in N. CA and would like a second opinion, I would highly recommend Dr. Song at the Kaiser in Santa Clara. While Kaiser does limit the tests they put on the website, Dr. Song always emails us the results as soon as the tests get to her (and she snail mails us a hard copy), plus she will call us (without us asking) to discuss them if there is anything out of the ordinary. She also responds to emails very quickly (and I'm talkin' 10 p.m. on a Sunday night once!) and has come in on the weekend to see my husband (so he wouldn't have to make an extra trip, since he was going to be in the infusion center anyway). She is also constantly consulting with the folks at Stanford and UCSF to make sure she is up to date on all the latest Myeloma info. Within an hour of pomalyst being approved, she had emailed us to let us know that she was contacting the pharmacy to make sure we would get it ASAP (my husband is refractory).
I hope you find a Dr who is a better match foryou!
I am sorry to hear that your choices are limited in the Kaiser you are at- not sure where you are located, but if you are in N. CA and would like a second opinion, I would highly recommend Dr. Song at the Kaiser in Santa Clara. While Kaiser does limit the tests they put on the website, Dr. Song always emails us the results as soon as the tests get to her (and she snail mails us a hard copy), plus she will call us (without us asking) to discuss them if there is anything out of the ordinary. She also responds to emails very quickly (and I'm talkin' 10 p.m. on a Sunday night once!) and has come in on the weekend to see my husband (so he wouldn't have to make an extra trip, since he was going to be in the infusion center anyway). She is also constantly consulting with the folks at Stanford and UCSF to make sure she is up to date on all the latest Myeloma info. Within an hour of pomalyst being approved, she had emailed us to let us know that she was contacting the pharmacy to make sure we would get it ASAP (my husband is refractory).
I hope you find a Dr who is a better match foryou!
Re: Doctor patient communication
hi Diana ,
you`re not the only one that gets treated like that. i know how it feels and how frustrating it can be. me and my friend Ian went to hospital , of course the main doctor is never there (hematologist) you get every time a new consultant , who is not familiar at all with your case. i had few questions . (he only printed out blood work, Hb / Albumin / Calcium etc)
nothing about the other tests done. it has been almost 1 YEAR and we still don`t know what bone marrow aspirate said. they are always trying to keep it short. the less you know the better. i asked : B2M / CRP / SPEP / UPEP levels. etc. he was looking at screen saying , you only need to know sFLC test , why do you want the other ones ?
the consultant was getting very impatient. after 4 , 5 min with us , he got up and said, if you have questions like that , phone a day ahead and tell the office , we need warning of course they`re not gonna clear 30 min of their schedule to help you, and they don`t wanna give us copies of other tests. it`s always : why do you wanna know that ? why do you need to bother with so much technical stuff ?
they treat both of us like 5 year old kids.
Just hang in there , and if you have the opportunity to change doctor , and get a consultant who is more kind and more patient , ready to explain things for you , don`t hesitate. we all have to many things on our minds to start with, when you`re dealing with something as serious as multiple myeloma you don`t need hassle on top of that , trying to get your own results.
take care.
you`re not the only one that gets treated like that. i know how it feels and how frustrating it can be. me and my friend Ian went to hospital , of course the main doctor is never there (hematologist) you get every time a new consultant , who is not familiar at all with your case. i had few questions . (he only printed out blood work, Hb / Albumin / Calcium etc)
nothing about the other tests done. it has been almost 1 YEAR and we still don`t know what bone marrow aspirate said. they are always trying to keep it short. the less you know the better. i asked : B2M / CRP / SPEP / UPEP levels. etc. he was looking at screen saying , you only need to know sFLC test , why do you want the other ones ?
the consultant was getting very impatient. after 4 , 5 min with us , he got up and said, if you have questions like that , phone a day ahead and tell the office , we need warning of course they`re not gonna clear 30 min of their schedule to help you, and they don`t wanna give us copies of other tests. it`s always : why do you wanna know that ? why do you need to bother with so much technical stuff ?
they treat both of us like 5 year old kids.
Just hang in there , and if you have the opportunity to change doctor , and get a consultant who is more kind and more patient , ready to explain things for you , don`t hesitate. we all have to many things on our minds to start with, when you`re dealing with something as serious as multiple myeloma you don`t need hassle on top of that , trying to get your own results.
take care.
-
johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: Doctor patient communication
Hi Johanna,
I get the impression from your postings that you are in the UK. If that's the case, then you should find out how to contact the "Patient Advice and Liaison Service" for the NHS Trust where your friend is being treated. They may be able to help your friend get better access to his test results.
I may be wrong, but I think the general problem you are facing with your friend is due to the fact that treatment of myeloma in the UK -- particularly treatment of newly diagnose myeloma -- is fairly standardized. It's one of the relatively standard "side effects" of a centralized universal health system. So your friend's physicians are thinking "What's the benefit of sharing all the test results with the patient, since it won't really change the way we treat him."
I'm not justifying this attitude. But I do think it may help you if you understand better where the medical professionals who you are dealing with are coming from.
I get the impression from your postings that you are in the UK. If that's the case, then you should find out how to contact the "Patient Advice and Liaison Service" for the NHS Trust where your friend is being treated. They may be able to help your friend get better access to his test results.
I may be wrong, but I think the general problem you are facing with your friend is due to the fact that treatment of myeloma in the UK -- particularly treatment of newly diagnose myeloma -- is fairly standardized. It's one of the relatively standard "side effects" of a centralized universal health system. So your friend's physicians are thinking "What's the benefit of sharing all the test results with the patient, since it won't really change the way we treat him."
I'm not justifying this attitude. But I do think it may help you if you understand better where the medical professionals who you are dealing with are coming from.
Re: Doctor patient communication
In my case, I think I solved the problem. I THINK I did. I don't know yet! When the doc kept asking me why I was 'obsessing over one lab result," "Don't google things," and spent more time telling me how much time he didn't have than it would have taken to simply give me the numbers, I went around him. I found out that I have the absolute RIGHT to my medical records, whether they are posted on the website or not, and I went to the medical records department and had *them* print 'em out for me.
Then I googled the results. Mostly, that meant I came to the Myeloma Beacon forums. Bless this forum!
Once armed with the test results, and informed about what the meant, I went in for 'the talk.' Dr. B was all ready for the hysterical middleaged woman, and he got....me. Well informed, ready to deal...already figured out what the diagnosis was going to be and up on the numbers and treatment possibilities. He was so flurmuggled that he forgot that I was supposed to be this ditzy emotional wreck and started treating me like a team member.
I'm still not certain I'll keep him, but it was so much fun to FLOOR him and see the 180 attitude change that I just might. He went from the paternal 'don't worry your little head and stop taking up my time' attitude, to 'hey...this is a woman who's ready to deal with this!"
Of course, he's as wrong about the second as he was about the first, but I'll just deal with this stuff as it happens.
I'm not certain, but if you are in the UK, don't you also have the right to your medical records? Isn't there some other way you can get them?
Then I googled the results.
Mostly, that meant I came to the Myeloma Beacon forums. Bless this forum! Once armed with the test results, and informed about what the meant, I went in for 'the talk.' Dr. B was all ready for the hysterical middleaged woman, and he got....me. Well informed, ready to deal...already figured out what the diagnosis was going to be and up on the numbers and treatment possibilities. He was so flurmuggled that he forgot that I was supposed to be this ditzy emotional wreck and started treating me like a team member.
I'm still not certain I'll keep him, but it was so much fun to FLOOR him and see the 180 attitude change that I just might. He went from the paternal 'don't worry your little head and stop taking up my time' attitude, to 'hey...this is a woman who's ready to deal with this!"
Of course, he's as wrong about the second as he was about the first, but I'll just deal with this stuff as it happens.
I'm not certain, but if you are in the UK, don't you also have the right to your medical records? Isn't there some other way you can get them?
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
27 posts
• Page 2 of 3 • 1, 2, 3