Where I am, I have the choice between two hematologist / oncologists. Two. They have offices next to one another.
Yesterday I got a 'call back' from the one I've been going to for the last two years, in which he told me that I must have 'chemo brain' (and he actually repeated that, claiming to be serious) because he had responded to a light chain question I had.
Well, he was correct. He had responded to that. Unfortunately, about three weeks later I e-mailed a question to him about proteins and a very slight trend I was seeing. In that e-mail, I told him that I wasn't worried about the tests at all; everything was normal; they simply prompted a 'curiosity bump,' and I wanted to ask a quick question about when we should begin to get nervous. I know he saw that e-mail because he did answer the other question I asked in it, about when he wanted to see me again, but he didn't answer my question about the IgA, etc.
I went to get my monthly blood tests yesterday and noticed that he had ordered only a CBC, and none of the other tests that he had, until now, always asked for. So I e-mailed him again, asking about, first, the question he did not answer and second, why the change in blood tests? Since I'm now a "Senior Advantage' member and have to pay through the nose for blood tests, I wanted to make sure that this was not an oversight, and I didn't have to go back and pay again.
During that call he was brusque, told me that he had answered my question (he was referring to the light chain question) and that I had chemo brain. He told me that I was doing so well that I 'didn't need him' (well, yes, I KNOW that I'm doing well ... that's not the point, is it?) and that I didn't need all those other tests, and that he had to take a call from another doctor, good bye.
He DID finally say that when my IgG reached 1600 then he'd begin to be concerned (it's 1120 at the moment). That's nice.
I don't think that he is incompetent, by any means; as far as I can tell he's treating me appropriately. However, I would really like to have a doctor that doesn't think I'm an idiot, and that doesn't make me feel impertinent when I ask a question. It's not like I bug him daily; if I contact him once a month on my 'off week' from Revlimid, it's only because he forgot to write the prescription.
I don't need this, especially since I have to be my own advocate in this whole thing. Does anybody know a multiple myeloma specialist in the Kaiser Permanente Southern California system?
Forums
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Multiple myeloma specialist in Kaiser Permanente?
Hi Diana,
Sorry to hear what you had to go through recently with your doctor. Not pleasant.
I'm not with Kaiser, so I don't have any experience that could help you directly. However, there was a discussion a while ago here in the forum that may give you some useful tips:
"Multiple myeloma and Kaiser SoCal" (Dec 20, 2014)
Hope you can find a new doctor who you're happy with.
Sorry to hear what you had to go through recently with your doctor. Not pleasant.
I'm not with Kaiser, so I don't have any experience that could help you directly. However, there was a discussion a while ago here in the forum that may give you some useful tips:
"Multiple myeloma and Kaiser SoCal" (Dec 20, 2014)
Hope you can find a new doctor who you're happy with.
-
JimNY
Re: Multiple myeloma specialist in Kaiser Permanente?
Hi Dianalad,
I am not a patient in the U.S., but I think that any of us patients could relate to having a specialist for myeloma with whom you can have a good rapport. If he does not feel comfortable talking with you, he may also be like that with other patients.
I don't think that being told you have 'chemo brain' is very tactful! Your questions sound reasonable to me, and of course you would contact him if your Revlimid prescription had not been renewed.
Here's a thought ... Is he being paid for answering emails, or is he on 'fee for service', where he would be paid for office visits and (perhaps) phone calls only? You might find that he is expecting you to either make an appointment , or phone, so that he is paid for the information. That is not something that I could know about the system you are in though!
I am not a patient in the U.S., but I think that any of us patients could relate to having a specialist for myeloma with whom you can have a good rapport. If he does not feel comfortable talking with you, he may also be like that with other patients.
I don't think that being told you have 'chemo brain' is very tactful! Your questions sound reasonable to me, and of course you would contact him if your Revlimid prescription had not been renewed.
Here's a thought ... Is he being paid for answering emails, or is he on 'fee for service', where he would be paid for office visits and (perhaps) phone calls only? You might find that he is expecting you to either make an appointment , or phone, so that he is paid for the information. That is not something that I could know about the system you are in though!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Multiple myeloma specialist in Kaiser Permanente?
I am being treated at Kaiser in Riverside. To the best of my knowledge, there are no exclusive myeloma specialist in the Kaiser system in southern California. However, in my experience, I have found that the Bone Marrow Transplant Team (BMT) at Kaiser Sunset to be the most experienced with myeloma. I believe this is because, while they are not necessarily myeloma specialists, they focus on patients who need stem cell transplants (SCTs), and many of these are myeloma patients. So they have more experience than most of the others.
The BMT team members do also spend a lot of time at City of Hope, and I believe there is some collaboration and knowledge sharing from that. I see the doctor on the BMT team who did my SCT when I am looking for a second opinion within Kaiser, and I find he is more up to date on trials, treatments, and other developments in myeloma than my doctor at Kaiser in Riverside.
The other thing I have learned though my experience is that Kaiser, like a lot of companies, sets performance metrics for their employees, and for their doctors this seems to be seeing about 4 patients an hour for general appointments. I have overhead the staff making sure they get a doctor credited for seeing a patient in their records system.
It seems that, while Kaiser has a system set up to contact your doctor through email, I do not believe their doctors get credited much for the time spent answering those emails. Often someone on the nursing staff screens those emails first to see if they can address the issue. In my experience, I get email response to things like prescriptions renewals and when I am having immediate issues like side effects or health problems that may require immediate attention, but not to general questions about myeloma disease or even lab results unless there is something really wrong.
If I schedule an appointment, though, I do find that my doctor is more than willing to discuss myeloma in general and go over my lab results. I find that he really does not want to discuss labs by email but in person at an appointment.
I see how with the fairly high case load most of the doctors at Kaiser have they could get in a situation where they could spend the majority of their time just answering email from their patients, for which they probably do not get credited much. I feel they limit the time spent answering email so they can focus more on appointments.
I am not saying this is right or wrong, but just my observations of the way it is.
I wonder if in a third-party insurance situation a doctor can bill time answering email or phone calls to insurance as a visit, much like lawyers do with their clients. That might explain some differences in people's experiences with HMOs like Kaiser and other institutions that charge to medical insurance providers.
The BMT team members do also spend a lot of time at City of Hope, and I believe there is some collaboration and knowledge sharing from that. I see the doctor on the BMT team who did my SCT when I am looking for a second opinion within Kaiser, and I find he is more up to date on trials, treatments, and other developments in myeloma than my doctor at Kaiser in Riverside.
The other thing I have learned though my experience is that Kaiser, like a lot of companies, sets performance metrics for their employees, and for their doctors this seems to be seeing about 4 patients an hour for general appointments. I have overhead the staff making sure they get a doctor credited for seeing a patient in their records system.
It seems that, while Kaiser has a system set up to contact your doctor through email, I do not believe their doctors get credited much for the time spent answering those emails. Often someone on the nursing staff screens those emails first to see if they can address the issue. In my experience, I get email response to things like prescriptions renewals and when I am having immediate issues like side effects or health problems that may require immediate attention, but not to general questions about myeloma disease or even lab results unless there is something really wrong.
If I schedule an appointment, though, I do find that my doctor is more than willing to discuss myeloma in general and go over my lab results. I find that he really does not want to discuss labs by email but in person at an appointment.
I see how with the fairly high case load most of the doctors at Kaiser have they could get in a situation where they could spend the majority of their time just answering email from their patients, for which they probably do not get credited much. I feel they limit the time spent answering email so they can focus more on appointments.
I am not saying this is right or wrong, but just my observations of the way it is.
I wonder if in a third-party insurance situation a doctor can bill time answering email or phone calls to insurance as a visit, much like lawyers do with their clients. That might explain some differences in people's experiences with HMOs like Kaiser and other institutions that charge to medical insurance providers.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Multiple myeloma specialist in Kaiser Permanente?
My experience is that it may not only be a matter of payment for telephone calls /appointments versus emails.
Here, in Denmark, where the treatment is free of charge, the official rule is that the doctors / nurses should not inform patients by phone / email.
I believe that there are two reasons: That they are not allowed to do so by the rules made to protect the patient against getting bad news by phone / email, but always getting the result during direct consultation. Thus, I am meeting my chief doctor and nurse every month, so far being told the same every time, no sign of the myeloma - now 8 months after ASCT. At the same time, the next blood test is taken, so that they can hopefully tell me the same next month. I guess that a less-than-OK result will cause them to call me to an immediate consultation. I know they are generally not allowed to inform patients by phone. And since Danish hospital doctors are on fixed wages, it would be easier for them just to do so.
The other reason is maybe tradition. Historically, the physician-patient relation has been defined as oral and very personal in its form. And a culturally inherited form of relationship may be difficult to change.
Many physicians also seem to be uneasy about change of roles. The doctor should, in their inherited picture, be the all-knowing gxxx deciding what to do and how to tell you, giving you the choices they believe to be relevant. There are many good exceptions, but it may still be a part of many doctors self-image that they are at another level than their patients, and, by the way, it may in many cases be true
*.
I sure hope that you get your problem solved, confidence between us patients and our physicians are crucial.
*Personally, I do feel that I am very well treated and informed. But there where times when they forgot important tests and I as a new patient, having read a lot, had to point to this. Thus creating a shift in roles that I could feel made them a bit uneasy during the consultations. But give them a little time to adjust ... At least this was my experience ... They are humans, too, and change is always coming slowly
Here, in Denmark, where the treatment is free of charge, the official rule is that the doctors / nurses should not inform patients by phone / email.
I believe that there are two reasons: That they are not allowed to do so by the rules made to protect the patient against getting bad news by phone / email, but always getting the result during direct consultation. Thus, I am meeting my chief doctor and nurse every month, so far being told the same every time, no sign of the myeloma - now 8 months after ASCT. At the same time, the next blood test is taken, so that they can hopefully tell me the same next month. I guess that a less-than-OK result will cause them to call me to an immediate consultation. I know they are generally not allowed to inform patients by phone. And since Danish hospital doctors are on fixed wages, it would be easier for them just to do so.
The other reason is maybe tradition. Historically, the physician-patient relation has been defined as oral and very personal in its form. And a culturally inherited form of relationship may be difficult to change.
Many physicians also seem to be uneasy about change of roles. The doctor should, in their inherited picture, be the all-knowing gxxx deciding what to do and how to tell you, giving you the choices they believe to be relevant. There are many good exceptions, but it may still be a part of many doctors self-image that they are at another level than their patients, and, by the way, it may in many cases be true
*.I sure hope that you get your problem solved, confidence between us patients and our physicians are crucial.
*Personally, I do feel that I am very well treated and informed. But there where times when they forgot important tests and I as a new patient, having read a lot, had to point to this. Thus creating a shift in roles that I could feel made them a bit uneasy during the consultations. But give them a little time to adjust ... At least this was my experience ... They are humans, too, and change is always coming slowly
-
Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Multiple myeloma specialist in Kaiser Permanente?
Hello,
I am sorry that I don't have a Southern California Kaiser doctor to recommend, as we are in the Northern California Kaiser system, but I wanted to reply to a previous post about Kaiser doctors. While you may be absolutely correct about how Kaiser credits their doctors, how the individual doctors respond to that can be very different person to person.
My husband has had the same oncologist since he was diagnosed in 2010. While she is not a myeloma specialist specifically, she does have a specialty in hematology and she is in constant communication with myeloma specialists at Stanford (where my DH had his stem cell transplant, which Kaiser paid for) and at UCSF. She also emails us back (usually same day, even at night) if we have a question, she will call with lab results or if there are any questions/concerns, and she has always taken whatever time was necessary to make sure we were all on the same page at appointments. Additionally, she has always treated us with the utmost respect, answering our questions and asking her own, to make sure that what was happening was what my husband wanted.
I'm not saying all this to show how lucky I am (though I am grateful for this doctor), but to say that there are doctors who will give you what you need, even within what could be a more restrictive system (I will say, I love how everything at Kaiser is connected – has made the last 5 years easier).
So, I hope that you are able to find a doctor who will treat you as a human being and not as a nuisance.
I am sorry that I don't have a Southern California Kaiser doctor to recommend, as we are in the Northern California Kaiser system, but I wanted to reply to a previous post about Kaiser doctors. While you may be absolutely correct about how Kaiser credits their doctors, how the individual doctors respond to that can be very different person to person.
My husband has had the same oncologist since he was diagnosed in 2010. While she is not a myeloma specialist specifically, she does have a specialty in hematology and she is in constant communication with myeloma specialists at Stanford (where my DH had his stem cell transplant, which Kaiser paid for) and at UCSF. She also emails us back (usually same day, even at night) if we have a question, she will call with lab results or if there are any questions/concerns, and she has always taken whatever time was necessary to make sure we were all on the same page at appointments. Additionally, she has always treated us with the utmost respect, answering our questions and asking her own, to make sure that what was happening was what my husband wanted.
I'm not saying all this to show how lucky I am (though I am grateful for this doctor), but to say that there are doctors who will give you what you need, even within what could be a more restrictive system (I will say, I love how everything at Kaiser is connected – has made the last 5 years easier).
So, I hope that you are able to find a doctor who will treat you as a human being and not as a nuisance.
Re: Multiple myeloma specialist in Kaiser Permanente?
I guess Canada is like Denmark, in the way that it is not common for a patient to have e-mail conversation with doctor; if a doctor has something to tell you or you have anything more than the most basic of quick questions, you meet with the doctor or his resident; likely because both countries have similar health care systems.
A bit off topic.
A bit off topic.
-
Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Multiple myeloma specialist in Kaiser Permanente?
My husband has multiple myeloma and we are Kaiser members. We see Dr. Cai who is located at the Kaiser Sunset facility. My sister also used doctors from the Kaiser Sunset facility. You have the right to interview and change doctors at any time for any reason. They all work together as a team so you get the best of care, but its your personal doctor that you see that you need to connect with and have a good rapport with. If you don't, change doctors. They are used to it and don't mind (from our experience).
Blessings.
Blessings.
-
belle
Re: Multiple myeloma specialist in Kaiser Permanente?
Can anyone give me the name of a Kaiser doctor that specializes in multiple myeloma? We are in northern California, but will travel if needed.
Re: Multiple myeloma specialist in Kaiser Permanente?
Hello,
My husband was diagnosed in December 2014. We are Kaiser members, and he sees Dr. Grennan at Sacramento, Morse Ave. I do not know if he is a myeloma "specialist", but he is head of the hematology/oncology dept.
I hope this helps you. God Bless.
My husband was diagnosed in December 2014. We are Kaiser members, and he sees Dr. Grennan at Sacramento, Morse Ave. I do not know if he is a myeloma "specialist", but he is head of the hematology/oncology dept.
I hope this helps you. God Bless.
-
Julesangel
11 posts
• Page 1 of 2 • 1, 2