I am going to see a hematologist-oncologist tomorrow for the first time. I was diagnosed with MGUS 3 weeks ago. I don't really know what to expect. I'm sure he will do more blood tests and send me home with the 24-hour urine test, but other than that ,will he run more tests right then, will he do a physical exam?
If anyone could give me an idea what their first visit was like, I would appreciate it. Thank you, Chris
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Re: Have MGUS: What to expect at first oncologist visit?
Hi Chismcd99,
Welcome to the forum.
This forum thread might help you out in prepping for the appointment and getting the most out of it:
"Recently diagnosed with MGUS" (started May 4, 2016)
In your case, I would expect the hematologist to explain what he/she knows so far, including the implications of the lab results that are already in hand. The hematologist may be ordering some more tests, so you may very well see him/her again in the very near future for a follow-up visit to discuss the additional test results. In any case, be sure to ask lots of questions, including the ones in the above referenced thread.
As far as physical exams are concerned at these hematologist appointments, my multiple myeloma specialist in LA always gives me a quick overall physical exam whenever I see him. However, all the other hematologists I have seen (including the one that routinely tracks my markers) don't physically exam me unless I mention some particular physical concern such as a pain I might be experiencing.
Good luck and let us know how things go.
Welcome to the forum.
This forum thread might help you out in prepping for the appointment and getting the most out of it:
"Recently diagnosed with MGUS" (started May 4, 2016)
In your case, I would expect the hematologist to explain what he/she knows so far, including the implications of the lab results that are already in hand. The hematologist may be ordering some more tests, so you may very well see him/her again in the very near future for a follow-up visit to discuss the additional test results. In any case, be sure to ask lots of questions, including the ones in the above referenced thread.
As far as physical exams are concerned at these hematologist appointments, my multiple myeloma specialist in LA always gives me a quick overall physical exam whenever I see him. However, all the other hematologists I have seen (including the one that routinely tracks my markers) don't physically exam me unless I mention some particular physical concern such as a pain I might be experiencing.
Good luck and let us know how things go.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have MGUS: What to expect at first oncologist visit?
Thank you so much for your reply. I printed out what you suggested as far as questions. I have so many and I am so afraid I am going to forget to ask important questions. I will be posting later. I don't really expect to find out too much today.
Have a wonderful day and wonderful Thanksgiving.
Have a wonderful day and wonderful Thanksgiving.
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chrismcd99 - Name: chrismcd99
- Who do you know with myeloma?: myself
- Age at diagnosis: 57
Re: Have MGUS: What to expect at first oncologist visit?
Hi everyone.
Well, I had my first visit with an oncologist today. I was expecting to ask a lot of questions and get a lot of info. Instead he never gave me a chance to ask any questions.
I took a copy of the lab reports I had, to ask them to be explained. He had no access to any of my lab reports that have been done, so he had to go by the ones I brought.
He told me that my numbers were low, he did blood work, did a spot urine test, and sent me for a total skeletal xray. He told me that he did not believe that I needed a bone marrow biopsy, but if I really wanted one, he would do it next week.
That was basically the entire appointment. My husband says he didn't give me a chance to answer any questions because he didn't have any answers. I simply wanted to find out what the lab reports I already had meant.
I feel like maybe I should look into a second opinion with a specialist that deals with MGUS. My cousin has stage 3 multiple myeloma and she's already given me the name of her doctors. Am I being unreasonable? I was just looking forward to getting some answers and came out with absolutely nothing more than what I went in with.
Sorry about ranting. Have a good evening.
chris
Well, I had my first visit with an oncologist today. I was expecting to ask a lot of questions and get a lot of info. Instead he never gave me a chance to ask any questions.
I took a copy of the lab reports I had, to ask them to be explained. He had no access to any of my lab reports that have been done, so he had to go by the ones I brought.
He told me that my numbers were low, he did blood work, did a spot urine test, and sent me for a total skeletal xray. He told me that he did not believe that I needed a bone marrow biopsy, but if I really wanted one, he would do it next week.
That was basically the entire appointment. My husband says he didn't give me a chance to answer any questions because he didn't have any answers. I simply wanted to find out what the lab reports I already had meant.
I feel like maybe I should look into a second opinion with a specialist that deals with MGUS. My cousin has stage 3 multiple myeloma and she's already given me the name of her doctors. Am I being unreasonable? I was just looking forward to getting some answers and came out with absolutely nothing more than what I went in with.
Sorry about ranting. Have a good evening.
chris
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chrismcd99 - Name: chrismcd99
- Who do you know with myeloma?: myself
- Age at diagnosis: 57
Re: Have MGUS: What to expect at first oncologist visit?
Hi Chris,
If you post up your results (as well as normal range and units of measurement) here, and explain what your question is, there are numerous well educated people on the forum who may be able to provide you with some guidance.
As far as seeing another specialist, of course that's your call, but in my experience I always find doctors who are willing to engage in conversation and explanation much better (and usually more empathetic) than those who don't. If you post where you are, other members here may also be able to guide you to a myeloma treatment center near you with myeloma specialists.
Tori
If you post up your results (as well as normal range and units of measurement) here, and explain what your question is, there are numerous well educated people on the forum who may be able to provide you with some guidance.
As far as seeing another specialist, of course that's your call, but in my experience I always find doctors who are willing to engage in conversation and explanation much better (and usually more empathetic) than those who don't. If you post where you are, other members here may also be able to guide you to a myeloma treatment center near you with myeloma specialists.
Tori
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torifrog - Name: Tori
- Who do you know with myeloma?: Myself - MGUS
- When were you/they diagnosed?: Sept 1 2016
- Age at diagnosis: 51
Re: Have MGUS: What to expect at first oncologist visit?
Hi Chris,
I totally agree with Tori.
I don't think you are being unreasonable at all in wanting to get a second opinion. I also think it's invaluable to have a relationship with a good multiple myeloma specialist, even if you are diagnosed with MGUS or smoldering multiple myeloma. I say this because I think it's good to know upfront who you would be working with should your disease ever progress and to know ahead of time if their treatment philosophy meshes with yours.
I'm also not surprised that the doctor may not be insisting on a bone marrow biopsy if your markers are truly low and you are asymptomatic. I personally like to have as much information as possible and get comfort in not having to guess about what may be going on in my body. So, I would would probably opt for the biopsy if it were offered to me under the circumstances. But if you do opt for a bone marrow biopsy, I might suggest doing it under the care of a communicative specialist since bone marrow biopsy results require a lot of explanation by a doctor in order to make heads or tails of the results - and it doesn't sound like your current doctor is all that communicative.
Like Tori said, it would be helpful if you posted the key markers I mentioned earlier and let us know what city you are in if you are interested in getting some recommendations on specialists in your area.
I totally agree with Tori.
I don't think you are being unreasonable at all in wanting to get a second opinion. I also think it's invaluable to have a relationship with a good multiple myeloma specialist, even if you are diagnosed with MGUS or smoldering multiple myeloma. I say this because I think it's good to know upfront who you would be working with should your disease ever progress and to know ahead of time if their treatment philosophy meshes with yours.
I'm also not surprised that the doctor may not be insisting on a bone marrow biopsy if your markers are truly low and you are asymptomatic. I personally like to have as much information as possible and get comfort in not having to guess about what may be going on in my body. So, I would would probably opt for the biopsy if it were offered to me under the circumstances. But if you do opt for a bone marrow biopsy, I might suggest doing it under the care of a communicative specialist since bone marrow biopsy results require a lot of explanation by a doctor in order to make heads or tails of the results - and it doesn't sound like your current doctor is all that communicative.
Like Tori said, it would be helpful if you posted the key markers I mentioned earlier and let us know what city you are in if you are interested in getting some recommendations on specialists in your area.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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