Hi everyone.
To make a long story short, my father, mother and I are meeting with the oncologist / hematologist in just a few days. He had numbness in his toes, so his PCP ordered blood work which showed an abnormality with an enzyme being produced by the marrow that shouldn't be there. He subsequently went through a series of scans and it was revealed that he had a few lesions on his "butt bones". A couple of weeks ago, he had a bone marrow biopsy done and tomorrow, we get the results. I have several friends who are doctors, one of whom is an orthopedic surgeon, and while none of them "confirmed" the diagnosis of multiple myeloma, they were pretty sure, based on what I was reporting, that this was the case.
I'm leaning on this group a bit to ask what questions should I have prepared for the oncologist tomorrow. What do I need to know? What do I need to leave that meeting knowing? I've already decided I'm getting a second opinion from a myeloma specialist at Roswell Park in Buffalo, so any advice you have on how to breach that topic with the local guy would help (i.e., I don't want to offend him).
My parents lost their only other child (my brother) in February and my mother isn't well. My father being diagnosed with cancer is, quite frankly, awful. But I need to be their rock and I need to have my stuff together tomorrow - so if anyone out there can please help me construct a list of vital questions to ask the doctor, I'd really appreciate it. Thank you so much for your time and kindness.
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Re: Diagnosis coming soon: questions to ask oncologist?
Hi Peak,
I hope your father turns out to have something other than multiple myeloma, and that it's also much more benign than multiple myeloma.
I shared some feedback and pointers with you in response to your first posting. I'm not sure you saw it. If not, there is some good information that you should know there:
https://myelomabeacon.org/forum/possible-multiple-myeloma-diagnosis-advice-t5814.html
Also, Multibilly has provided some good advice in the past for precisely the sort of situation you're in. See his posting in this thread:
https://myelomabeacon.org/forum/preparing-for-first-meeting-with-oncologist-t2739.html
Another thread you may find useful is this one:
https://myelomabeacon.org/forum/what-to-ask-at-first-oncology-appointment-t5754.html
There are other related discussions here in the forum you can find by searching on the keywords "first", "appointment", "meeting", and "oncologist" in the forum search box (one keyword at a time).
Good luck!
I hope your father turns out to have something other than multiple myeloma, and that it's also much more benign than multiple myeloma.
I shared some feedback and pointers with you in response to your first posting. I'm not sure you saw it. If not, there is some good information that you should know there:
https://myelomabeacon.org/forum/possible-multiple-myeloma-diagnosis-advice-t5814.html
Also, Multibilly has provided some good advice in the past for precisely the sort of situation you're in. See his posting in this thread:
https://myelomabeacon.org/forum/preparing-for-first-meeting-with-oncologist-t2739.html
Another thread you may find useful is this one:
https://myelomabeacon.org/forum/what-to-ask-at-first-oncology-appointment-t5754.html
There are other related discussions here in the forum you can find by searching on the keywords "first", "appointment", "meeting", and "oncologist" in the forum search box (one keyword at a time).
Good luck!
Re: Diagnosis coming soon: questions to ask oncologist?
Hi Terry. I'm very grateful for both of your responses, and apologize for not saying so the first time. I thought I had responded and see now that I have not. I will look through what you provided. Again, thank you.
Based on what these doctor friends are telling me, the lesions pretty much confirm that it is multiple myeloma. I'm certainly not looking for medical advice, but is it possible it could be something else? I guess I've sorta resigned myself to the idea that my Dad has multiple myeloma, which I know is not very positive, but I suppose I'd rather prep for the worst and be pleasantly surprised than the other way around.
Based on what these doctor friends are telling me, the lesions pretty much confirm that it is multiple myeloma. I'm certainly not looking for medical advice, but is it possible it could be something else? I guess I've sorta resigned myself to the idea that my Dad has multiple myeloma, which I know is not very positive, but I suppose I'd rather prep for the worst and be pleasantly surprised than the other way around.
Re: Diagnosis coming soon: questions to ask oncologist?
I am scheduled for my first visit with the myeloma specialist tomorrow. While I haven't had a MRI to determine if there is any bone involvement, my questions are based on a diagnosis of smoldering.
Assuming the doctor provides an overview, and I remember to LET him talk, these are the outstanding questions (after studying my lab results and this site), I want to make sure I have the answer to before leaving his office. (Unfortunately for the doctor, I have another full day of thinking and this will probably not be all of them.)
Also, I'm the type that needs the full picture now. The process of during one test, reviewing it and then possibly scheduling another one is too much. Take all the tests now so that I can have a plan of action and move on with my life, one way or the other. I haven't really worked in over a month since this mess started.
DIAGNOSIS/TREATMENT
1) What is the exact diagnosis?
2) If not active myeloma, what is the chance/percentage for progression?
3) What risk factors do I have?
4) Will you be scheduling the following tests: full body MRI, B2M, bone density
5) What is the treatment plan?
6) If not active, can we harvest my stem cells now for later use? If so, what are the procedures for this?
TEST RESULTS
1) BMB shows that 98% of the plasma cells are abnormal. Is this a risk factor for progression and how did it factor into your diagnosis and treatment plan?
2) FISH test shows abnormal genes. What impact do these have on the prognosis?
3) My FLC seems extremely high. Is this suggestive of aggressive disease?
4) From my understanding, dependent upon the location of the biopsy, since myeloma is a "patchy" disease, you may get a higher or lower percentage of actual plasma cells. If this is the case, why not do multiple biopsies in different locations to ensure that you are not underestimating the percentage of plasma cells? This may assist in preventing future organ damage.
OTHER MEDICAL ISSUES
1) My internist believes that my ongoing gastric issues and pain (specifically back and abdominal area) are the result of having gall stones. While two prior EKGs and ultrasounds were negative, she says they do not always show. In our prior conversation (with the nurse after reviewing my e-mail), you stated that you believe this is part of the myeloma. If this is true:
a) How does myeloma affect the gall bladder?
b) Would this be defined as an event that would lead to a diagnosis of "active" myeloma even though it is not one of the CRAB criteria?
c) If determined to not be part of the myeloma, is it safe to have surgery for removal of the gall bladder? Would this impact future treatments?
2) During the prior year my eyesight has reduced drastically and the recent exam revealed cataracts in both eyes. Questions:
a) Could this be part of the myeloma?
b) Research indicates that myeloma can lead to Hyperviscocity Syndrome and result in cataracts. What tests would you perform to determine if I have this? If the results are yes, does this indicate active myeloma?
c) Is it safe to have the cataract surgery?
d) Research revealed that one of the chemo drugs (don't remember which one) may actually cause cataracts? If so, is it better to have them removed now or after treatment?
3) If treatment is warranted, what impact does my prior chemo have? Would this limit the amount of chemo that I could have now?
4) Prior cancer treatment with Herceptin led to congestive heart failure on two occasions. Will this have an impact on the treatment plan?
While the questions for Other Medical Issues are specific to me, I think you might want to review your dad's health issues and make a list of questions. The doctor needs to have all the information possible in making decisions. Hope this helps.
Assuming the doctor provides an overview, and I remember to LET him talk, these are the outstanding questions (after studying my lab results and this site), I want to make sure I have the answer to before leaving his office. (Unfortunately for the doctor, I have another full day of thinking and this will probably not be all of them.)
Also, I'm the type that needs the full picture now. The process of during one test, reviewing it and then possibly scheduling another one is too much. Take all the tests now so that I can have a plan of action and move on with my life, one way or the other. I haven't really worked in over a month since this mess started.
DIAGNOSIS/TREATMENT
1) What is the exact diagnosis?
2) If not active myeloma, what is the chance/percentage for progression?
3) What risk factors do I have?
4) Will you be scheduling the following tests: full body MRI, B2M, bone density
5) What is the treatment plan?
6) If not active, can we harvest my stem cells now for later use? If so, what are the procedures for this?
TEST RESULTS
1) BMB shows that 98% of the plasma cells are abnormal. Is this a risk factor for progression and how did it factor into your diagnosis and treatment plan?
2) FISH test shows abnormal genes. What impact do these have on the prognosis?
3) My FLC seems extremely high. Is this suggestive of aggressive disease?
4) From my understanding, dependent upon the location of the biopsy, since myeloma is a "patchy" disease, you may get a higher or lower percentage of actual plasma cells. If this is the case, why not do multiple biopsies in different locations to ensure that you are not underestimating the percentage of plasma cells? This may assist in preventing future organ damage.
OTHER MEDICAL ISSUES
1) My internist believes that my ongoing gastric issues and pain (specifically back and abdominal area) are the result of having gall stones. While two prior EKGs and ultrasounds were negative, she says they do not always show. In our prior conversation (with the nurse after reviewing my e-mail), you stated that you believe this is part of the myeloma. If this is true:
a) How does myeloma affect the gall bladder?
b) Would this be defined as an event that would lead to a diagnosis of "active" myeloma even though it is not one of the CRAB criteria?
c) If determined to not be part of the myeloma, is it safe to have surgery for removal of the gall bladder? Would this impact future treatments?
2) During the prior year my eyesight has reduced drastically and the recent exam revealed cataracts in both eyes. Questions:
a) Could this be part of the myeloma?
b) Research indicates that myeloma can lead to Hyperviscocity Syndrome and result in cataracts. What tests would you perform to determine if I have this? If the results are yes, does this indicate active myeloma?
c) Is it safe to have the cataract surgery?
d) Research revealed that one of the chemo drugs (don't remember which one) may actually cause cataracts? If so, is it better to have them removed now or after treatment?
3) If treatment is warranted, what impact does my prior chemo have? Would this limit the amount of chemo that I could have now?
4) Prior cancer treatment with Herceptin led to congestive heart failure on two occasions. Will this have an impact on the treatment plan?
While the questions for Other Medical Issues are specific to me, I think you might want to review your dad's health issues and make a list of questions. The doctor needs to have all the information possible in making decisions. Hope this helps.
Re: Diagnosis coming soon: questions to ask oncologist?
Oops looks like I was typing and should have looked to see if someone else had responded before submitting. I clicked on the links in the above posts and they appear to provide a better list of questions. Mine are based on review of my test results and research and the outstanding questions I have.
Still, hope it gives you something to think about.
Still, hope it gives you something to think about.
Re: Diagnosis coming soon: questions to ask oncologist?
I really appreciate this response. Thank you so much.
Re: Diagnosis coming soon: questions to ask oncologist?
Hi everyone.
We met with the oncologist this morning and, thankfully, my Dad does not have any cancer. He has something called MGUS, and has an elevated level of the IgM antibody. They're going to test him every 6 months as the oncologist said there is a 10% chance this may turn into lymphoma or myeloma. I appreciate everyone's kindness, knowledge and support very, very much; and wish all of you well.
We met with the oncologist this morning and, thankfully, my Dad does not have any cancer. He has something called MGUS, and has an elevated level of the IgM antibody. They're going to test him every 6 months as the oncologist said there is a 10% chance this may turn into lymphoma or myeloma. I appreciate everyone's kindness, knowledge and support very, very much; and wish all of you well.
Re: Diagnosis coming soon: questions to ask oncologist?
Hi,
This is a topic that also interests me. Thanks for the very helpful replies.
My dad got a diagnosis of multiple myeloma one month ago. He went to the ER being super weirdly tired and bruised and they saw anemia and hypercalcemia in his blood and diagnosed him very quickly. Unfortunately, they saw that he also needed a quadruple bypass surgery and they sent him off for that before starting treatment (surgery was 10 days after diagnosis). They have only given him blood and Zometa twice now for his calcium (and once Aredia at the hospital where he had the heart surgery). The oncologist seems to be debating whether to start treatment now or wait that he heals a little more from his bypass (which was now almost three weeks ago). The fact that they want to start ASAP and that he has been needing Zometa / Aredia already 3 times in the last month is making my family and I think that his myeloma must be pretty aggressive? They also squeezed in a round of treatment with three drugs a few days before the bypass, but I cant remember the name of the medication they gave him.
The oncologist still hasn't met with us to explain what the treatment plan will be. We have an appointment soon (he got Zometa on Friday and will get bloodwork done then). Do you normally get a breakdown of the stage of the disease and the treatment plan? Is there something we should ask that we will forget? Any advice for that kind of doctors appointment?
We don't feel knowledgeable at all about the disease yet so there is still lots to learn, but I was wondering what we can expect from the doctor in this situation.
Thanks for any additional advice you may feel might add to what already has been posted in the thread!
This is a topic that also interests me. Thanks for the very helpful replies.
My dad got a diagnosis of multiple myeloma one month ago. He went to the ER being super weirdly tired and bruised and they saw anemia and hypercalcemia in his blood and diagnosed him very quickly. Unfortunately, they saw that he also needed a quadruple bypass surgery and they sent him off for that before starting treatment (surgery was 10 days after diagnosis). They have only given him blood and Zometa twice now for his calcium (and once Aredia at the hospital where he had the heart surgery). The oncologist seems to be debating whether to start treatment now or wait that he heals a little more from his bypass (which was now almost three weeks ago). The fact that they want to start ASAP and that he has been needing Zometa / Aredia already 3 times in the last month is making my family and I think that his myeloma must be pretty aggressive? They also squeezed in a round of treatment with three drugs a few days before the bypass, but I cant remember the name of the medication they gave him.
The oncologist still hasn't met with us to explain what the treatment plan will be. We have an appointment soon (he got Zometa on Friday and will get bloodwork done then). Do you normally get a breakdown of the stage of the disease and the treatment plan? Is there something we should ask that we will forget? Any advice for that kind of doctors appointment?
We don't feel knowledgeable at all about the disease yet so there is still lots to learn, but I was wondering what we can expect from the doctor in this situation.
Thanks for any additional advice you may feel might add to what already has been posted in the thread!
8 posts
• Page 1 of 1