Hi All,
I have been looking at the forums here for about a year now. My wife finds them very useful, and she recommended I ask for some advice.
So, I basically started with MGUS and now have test results that suggest that I am heading into smoldering myeloma. I am being treated at a top-end cancer institution in a major city. My care seems OK and in general I feel confident about my progress.
My concern is that I seem to be having a social/personal problem with my doc. He has a cold and often dismissive attitude when I see him. He says very little and appears uninterested. Also, when I ask questions, it seems like an imposition, perhaps even argumentative about my concerns?
Overall, he came well recommended and he is doing all the right things. But I feel uncomfortable and wonder if I should try to switch docs and how I could do that without causing some sort of problems for my care. I do not want to change hospitals, but I am concerned if I switch docs at the institution it might generate some fallout.
Any thoughts are appreciated.
MTT186
Forums
Re: Should I switch my specialist and, if so, how?
My thought is that if you are at a top center there must be other specialists available to you there. In my one year of experience I've spent a lot of time talking to my doctor and the other members of the team. I can't imagine what my level of anxiety would be at if I didn't feel comfortable talking to them. You will be spending a great deal of time and making some big decisions with this person. You should find someone you feel comfortable with.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Should I switch my specialist and, if so, how?
MTT186,
I think that a lot of patients unnecessarily fret over switching doctors and worry about what their specialist and/or their institution might think of such a change. My experience is that doctors are used to these kinds of changes (especially with cancer patients) and that they likely won't even know that you have dropped from their care. So, if I were you, I wouldn't give it a second thought and would simply seek out a specialist that meets your needs.
Now having said that, not every major cancer center has true multiple myeloma specialists on their staff. If you let us know what city you are in and/or what institution you are currently utilizing, folks on this forum would be happy to recommend some top specialists in your area and possibly at your current facility.
I think that a lot of patients unnecessarily fret over switching doctors and worry about what their specialist and/or their institution might think of such a change. My experience is that doctors are used to these kinds of changes (especially with cancer patients) and that they likely won't even know that you have dropped from their care. So, if I were you, I wouldn't give it a second thought and would simply seek out a specialist that meets your needs.
Now having said that, not every major cancer center has true multiple myeloma specialists on their staff. If you let us know what city you are in and/or what institution you are currently utilizing, folks on this forum would be happy to recommend some top specialists in your area and possibly at your current facility.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I switch my specialist and, if so, how?
If I was in your situation and could find another doctor, I'd switch. I want to be able to ask any question to my doctor and not feel like it's a stupid question or that I'm being judged for asking it. There may come a time when you don't agree with your doctor's approach and you need to be able to tell them that without fear.
I had 2 doctors (oncologist and transplant doctor) up until recently. When it came to maintenance therapy after my transplant, one doctor suggested maintenance therapy while the other wanted me to not have maintenance therapy. I ended up having to make that decision for myself. If either doctor would have been "mad" at me for going against their advice, it would have been difficult for me. As it turned out, they were both fine with my decision to go on maintenance therapy. The one doctor I see now is very friendly and listens to all of my questions and tries to answer them. Having a non-judgmental doctor makes it much easier to go through all of this.
Also, sometimes we just have better rapport with one person vs another.
I had 2 doctors (oncologist and transplant doctor) up until recently. When it came to maintenance therapy after my transplant, one doctor suggested maintenance therapy while the other wanted me to not have maintenance therapy. I ended up having to make that decision for myself. If either doctor would have been "mad" at me for going against their advice, it would have been difficult for me. As it turned out, they were both fine with my decision to go on maintenance therapy. The one doctor I see now is very friendly and listens to all of my questions and tries to answer them. Having a non-judgmental doctor makes it much easier to go through all of this.
Also, sometimes we just have better rapport with one person vs another.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Should I switch my specialist and, if so, how?
I did reply earlier in this thread to the query of where I am being treated, then re-thought the public nature of this info and deleted the post. Still worried about the "politics" of my issue!
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MTT186 - Who do you know with myeloma?: Self
- Age at diagnosis: 64
Re: Should I switch my specialist and, if so, how?
Not sure my story will be helpful, but here's what happened:
I had emergency surgery for a plasmacytoma and was in Skilled Nursing (rehab) afterwards for a month. My surgery team made an appointment for me with an oncologist/hematologist at the same teaching hospital, and I was medically transported in a wheelchair.
It didn't take long for me to have an issue with this doctor, the first person in my brief journey who was anything but stellar. I had real concerns. We didn't communicate well, which is a nice way of saying he communicated horribly. The details aren't important, but it was bad. Medical professionals I tell my story to are appalled, much less lay friends. I have since learned from numerous sources that I am not the only one who had a similar issue, which makes sense.
I was pro-active in making a change as the thought of going through this journey with him was inconceivable, and as a result have the most wonderful specialist (at the same cancer center) I could dream up. She is fantastic! I believe strongly in art + science, and for me, a doctor who does not listen to his/her patients is not keying in to the art – clinical experience – part of the equation, nor to treatment / therapy that takes my issues and needs into consideration. So, no matter how many multiple myeloma patients s/he sees, s/he's not for me and the sooner I make a change the better.
I also had some trepidation, fearing being labelled somehow as a difficult patient because I didn't want to continue with that doc, but in hindsight that was silly on so many levels, primarily the egocentricity of it, thinking they have the time (or interest) to give it any thought at all!
You can be sure, as with my doc, that there would be few people surprised to learn yet another patient was not clicking with him.
I had emergency surgery for a plasmacytoma and was in Skilled Nursing (rehab) afterwards for a month. My surgery team made an appointment for me with an oncologist/hematologist at the same teaching hospital, and I was medically transported in a wheelchair.
It didn't take long for me to have an issue with this doctor, the first person in my brief journey who was anything but stellar. I had real concerns. We didn't communicate well, which is a nice way of saying he communicated horribly. The details aren't important, but it was bad. Medical professionals I tell my story to are appalled, much less lay friends. I have since learned from numerous sources that I am not the only one who had a similar issue, which makes sense.
I was pro-active in making a change as the thought of going through this journey with him was inconceivable, and as a result have the most wonderful specialist (at the same cancer center) I could dream up. She is fantastic! I believe strongly in art + science, and for me, a doctor who does not listen to his/her patients is not keying in to the art – clinical experience – part of the equation, nor to treatment / therapy that takes my issues and needs into consideration. So, no matter how many multiple myeloma patients s/he sees, s/he's not for me and the sooner I make a change the better.
I also had some trepidation, fearing being labelled somehow as a difficult patient because I didn't want to continue with that doc, but in hindsight that was silly on so many levels, primarily the egocentricity of it, thinking they have the time (or interest) to give it any thought at all!
You can be sure, as with my doc, that there would be few people surprised to learn yet another patient was not clicking with him.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Should I switch my specialist and, if so, how?
MTT186,
You can find a list of myeloma treatment centers here:
https://myelomabeacon.org/resources/treatment-centers/
You can find a list of myeloma treatment centers here:
https://myelomabeacon.org/resources/treatment-centers/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I switch my specialist and, if so, how?
Hello, MTT:
I agree with the sentiment expressed by others in that you have to be comfortable with your doctor in all respects, and not to worry about their feelings excessively, and expect them to take it professionally.
I would just add one point in that depending on the location, it could be tricky to switch doctors in the same center for a reason of some degree of dissatisfaction. There are seniority and career issues within a department that create influences. If it's a big enough department, in theory, it may not be an issue, but it might be easier to switch to another center (that is done all the time) than to switch to a different doctor in the same center.
Just my two cents. Good luck.
I agree with the sentiment expressed by others in that you have to be comfortable with your doctor in all respects, and not to worry about their feelings excessively, and expect them to take it professionally.
I would just add one point in that depending on the location, it could be tricky to switch doctors in the same center for a reason of some degree of dissatisfaction. There are seniority and career issues within a department that create influences. If it's a big enough department, in theory, it may not be an issue, but it might be easier to switch to another center (that is done all the time) than to switch to a different doctor in the same center.
Just my two cents. Good luck.
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JPC - Name: JPC
Re: Should I switch my specialist and, if so, how?
MTT186,
I have to say that my specialist is great but 200 miles one way from home. I was recently told that at my next appointment I would have 20 minutes with the doctor. Of course there is about 30 minutes speaking with a nurse and doing a general exam first. 20 minutes after driving 200 miles? I know they are busy, but I should be given ample time to go over all my concerns.
As I said, the doctor is great, but her coordinator never returns calls or emails. I have offered to email or fax all my concerns or questions ahead of my visit so we could get the most out of the 20 minutes. No answer back.
I can understand your frustration with your doctor as mine is with the doctor's coordinator. If needed, I would seek another specialist. I have to have authorization first through my local oncologist for second opinions or change in doctors. My oncologist welcomes second opinions.
Make sure your insurance covers another specialist or hospital. If my doctor had a poor attitude, I would move on to another specialist. It's bad enough that we have to deal with multiple myeloma and all the treatments. No need for that attitude from your doc.
Castaway
I have to say that my specialist is great but 200 miles one way from home. I was recently told that at my next appointment I would have 20 minutes with the doctor. Of course there is about 30 minutes speaking with a nurse and doing a general exam first. 20 minutes after driving 200 miles? I know they are busy, but I should be given ample time to go over all my concerns.
As I said, the doctor is great, but her coordinator never returns calls or emails. I have offered to email or fax all my concerns or questions ahead of my visit so we could get the most out of the 20 minutes. No answer back.
I can understand your frustration with your doctor as mine is with the doctor's coordinator. If needed, I would seek another specialist. I have to have authorization first through my local oncologist for second opinions or change in doctors. My oncologist welcomes second opinions.
Make sure your insurance covers another specialist or hospital. If my doctor had a poor attitude, I would move on to another specialist. It's bad enough that we have to deal with multiple myeloma and all the treatments. No need for that attitude from your doc.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Should I switch my specialist and, if so, how?
Thank you all for the responses.
In general, you have confirmed my thoughts. I feel that I have enough going on without worrying about if my doc is uncommunicative and a bit hostile. He really has no reason to act this way to me, as I have been respectful and polite (as I am always!), so I am guessing it is just his typical manner.
I think I will hang on with him for a few more visits, and if I see a reasonable opening just ask him why he is apparently not very tolerant of questions and my need for explanations. Perhaps that will shift the balance. Meanwhile, I am in a waiting phase ... just waiting to see what happens next!
MTT
In general, you have confirmed my thoughts. I feel that I have enough going on without worrying about if my doc is uncommunicative and a bit hostile. He really has no reason to act this way to me, as I have been respectful and polite (as I am always!), so I am guessing it is just his typical manner.
I think I will hang on with him for a few more visits, and if I see a reasonable opening just ask him why he is apparently not very tolerant of questions and my need for explanations. Perhaps that will shift the balance. Meanwhile, I am in a waiting phase ... just waiting to see what happens next!
MTT
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MTT186 - Who do you know with myeloma?: Self
- Age at diagnosis: 64
13 posts
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