Hello everyone,
I am new to all of this and I am looking for answers to help my mother who is very scared and alone and not sure how to handle the news of being diagnosed with this.
I have done some initial research and from what I am reading, it looks like blood work typically will show abnormal red and white cell counts and elevated calcium. My mother's blood work were in the normal ranges for these. She did not have her urine tested for proteins yet. She got her diagnosis from getting a biopsy done on a mass she has on the lower part of her shoulder. It is a soft tissue mass and her skin is discolored on the outside.
Is it possible to be diagnosed from a tissue biopsy alone? How can they tell it is multiple myeloma from the biopsy?
They are having her speak with an oncologist tomorrow, but I wanted to know if there is any guidance or questions I can have her ask that could help her with this.
Forums
Re: Multiple myeloma diagnosis from biopsy alone?
Hi Vicki,
Welcome to the forum. I'm sorry to hear what you and your mom are going through right now.
First, I'm not a doc, so please verify everything I say with a doctor.
One doesn't look only at white and red blood cells counts and calcium to determine if one has multiple myeloma. These test results can be telling as part of an overall picture, but they can't tell you by themselves if one has multiple myeloma or not. One typically first relies on running a more complete battery of lab tests which are outlined in this the Laboratory Tests section of this document.
What you mention as far as being a soft tissue mass in the shoulder area sounds like it could be an extramedullary plasmacytoma (a growth or tumor that has not developed inside or on the surface of one's skeleton), if they in fact biopsied it and found multiple myeloma cells to be present. If they found multiple myeloma cells in the mass, this would almost certainly tell them that one has multiple myeloma. But in that case, you would still be running ALL the tests outlined in the above link and not just the Laboratory Tests to get a much more complete picture of the disease and to determine how to proceed.
If the biopsy did reveal that your mom has multiple myeloma, it is important that your mom seek out the counsel of a specialist that focuses entirely on multiple myeloma and not just an oncologist that may have some experience with multiple myeloma. Folks on this forum cannot emphasize this enough as the single most important thing that your mom can be doing if multiple myeloma is suspected.
If you let us know what city you mom is in, folks on the forum would be happy to point you to where you could find such a specialist.
Best of luck to you and your mom.
Welcome to the forum. I'm sorry to hear what you and your mom are going through right now.
First, I'm not a doc, so please verify everything I say with a doctor.
One doesn't look only at white and red blood cells counts and calcium to determine if one has multiple myeloma. These test results can be telling as part of an overall picture, but they can't tell you by themselves if one has multiple myeloma or not. One typically first relies on running a more complete battery of lab tests which are outlined in this the Laboratory Tests section of this document.
What you mention as far as being a soft tissue mass in the shoulder area sounds like it could be an extramedullary plasmacytoma (a growth or tumor that has not developed inside or on the surface of one's skeleton), if they in fact biopsied it and found multiple myeloma cells to be present. If they found multiple myeloma cells in the mass, this would almost certainly tell them that one has multiple myeloma. But in that case, you would still be running ALL the tests outlined in the above link and not just the Laboratory Tests to get a much more complete picture of the disease and to determine how to proceed.
If the biopsy did reveal that your mom has multiple myeloma, it is important that your mom seek out the counsel of a specialist that focuses entirely on multiple myeloma and not just an oncologist that may have some experience with multiple myeloma. Folks on this forum cannot emphasize this enough as the single most important thing that your mom can be doing if multiple myeloma is suspected.
If you let us know what city you mom is in, folks on the forum would be happy to point you to where you could find such a specialist.
Best of luck to you and your mom.
Last edited by Multibilly on Tue May 26, 2015 11:10 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma diagnosis from biopsy alone?
Hi Vicki,
I'm not a doctor, but I don't think your mother can be diagnosed with multiple myeloma without additional testing beyond the tests that determined that her skin tumor is a plasma tumor (plasmacytoma), which is what it seems to be.
You can find a summary of the latest criteria necessary for a diagnosis of multiple myeloma in this article and in the journal article it references (your mother's doctor should have access to the journal article).
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
My understanding is that your mother would have to have one or more of the "myeloma-defining events" listed in the article, including the older "CRAB" criteria, to be classified as having multiple myeloma. It is not enough to have just a plasma tumor like she has.
It is possible that her doctor has done many of these tests and found, for example, that she has what is known as an M-spike (monoclonal protein), or that she has myeloma cells in her bone marrow. In that case, I believe a multiple myeloma diagnosis would be warranted.
But if those tests were run, and nothing else showed up, then her plasma tumor would be what is known as a solitary plasmacytoma, and it would not be treated, I believe, in the same way as "regular" multiple myeloma. Instead, it probably would be surgically removed, and the area treated with additional radiation.
If your mother is not being seen by a myeloma specialist, I would recommend that she see one to make absolutely certain what her diagnosis is and how she should be treated. People here in the forum can help you locate one if you give us a general sense where you are (state, country, etc.).
Good luck!
I'm not a doctor, but I don't think your mother can be diagnosed with multiple myeloma without additional testing beyond the tests that determined that her skin tumor is a plasma tumor (plasmacytoma), which is what it seems to be.
You can find a summary of the latest criteria necessary for a diagnosis of multiple myeloma in this article and in the journal article it references (your mother's doctor should have access to the journal article).
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
My understanding is that your mother would have to have one or more of the "myeloma-defining events" listed in the article, including the older "CRAB" criteria, to be classified as having multiple myeloma. It is not enough to have just a plasma tumor like she has.
It is possible that her doctor has done many of these tests and found, for example, that she has what is known as an M-spike (monoclonal protein), or that she has myeloma cells in her bone marrow. In that case, I believe a multiple myeloma diagnosis would be warranted.
But if those tests were run, and nothing else showed up, then her plasma tumor would be what is known as a solitary plasmacytoma, and it would not be treated, I believe, in the same way as "regular" multiple myeloma. Instead, it probably would be surgically removed, and the area treated with additional radiation.
If your mother is not being seen by a myeloma specialist, I would recommend that she see one to make absolutely certain what her diagnosis is and how she should be treated. People here in the forum can help you locate one if you give us a general sense where you are (state, country, etc.).
Good luck!
Re: Multiple myeloma diagnosis from biopsy alone?
Thank you for the responses. She has not had a urinalysis done yet, and her blood work is normal. If protein is not found in her urine, is it possible she just has a solitary plasmacytoma and not multiple myeloma, even though that is what the pathology report says?
They are referring her to an oncologist, but I don't think they are specialists in multiple myeloma. We live near Pittsburgh, PA.
They are referring her to an oncologist, but I don't think they are specialists in multiple myeloma. We live near Pittsburgh, PA.
Re: Multiple myeloma diagnosis from biopsy alone?
Hi Vicki,
There are several folks on this forum that are from that area that can share their recommendations on specialists/facilities.
This is a general list of facilities in PA that have expertise in multiple myeloma.
https://myelomabeacon.org/resources/treatment-centers/#Pennsylvania
I'm not a doc, but I believe that a solitary plamacytoma in multiple myeloma-terms means a solitary plasmacytoma in or on the bone and not a plasmacytoma found in one's soft tissue.
If we are talking about a solitary BONE plasmacytoma, then the biopsy can show the presence of multiple myeloma, but one's other tests can be clear. But what you described sounds like it is NOT a BONE plasmacytoma, but rather a plasmacytoma in the soft tissue. See this article for a description of what I am talking about:
"Solitary Bone Plasmacytoma – What Every Patient Should Know," The Myeloma Beacon, May 4, 2012
Also, keep in mind that a 24-hour urine test by itself is not a good measure of having multiple myeloma. You really need to be running all the other lab tests that I referred to in my earlier post (SPEP, IFE, free light chain assay, etc), and not just a CBC test and a metabolic panel.
There are several folks on this forum that are from that area that can share their recommendations on specialists/facilities.
This is a general list of facilities in PA that have expertise in multiple myeloma.
https://myelomabeacon.org/resources/treatment-centers/#Pennsylvania
I'm not a doc, but I believe that a solitary plamacytoma in multiple myeloma-terms means a solitary plasmacytoma in or on the bone and not a plasmacytoma found in one's soft tissue.
If we are talking about a solitary BONE plasmacytoma, then the biopsy can show the presence of multiple myeloma, but one's other tests can be clear. But what you described sounds like it is NOT a BONE plasmacytoma, but rather a plasmacytoma in the soft tissue. See this article for a description of what I am talking about:
"Solitary Bone Plasmacytoma – What Every Patient Should Know," The Myeloma Beacon, May 4, 2012
Also, keep in mind that a 24-hour urine test by itself is not a good measure of having multiple myeloma. You really need to be running all the other lab tests that I referred to in my earlier post (SPEP, IFE, free light chain assay, etc), and not just a CBC test and a metabolic panel.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma diagnosis from biopsy alone?
The mass is not on her bone and is a soft tissue mass.
My concern is the doctor is telling her she has multiple myeloma just from the results of the biopsy. They want her to have further testing done, but shouldn't they be saying it is just a plasmacytoma right now and suspect possible multiple myeloma?
I don't understand how they can be certain in telling her she has multiple myeloma just from the biopsy and without having any other tests yet.
My concern is the doctor is telling her she has multiple myeloma just from the results of the biopsy. They want her to have further testing done, but shouldn't they be saying it is just a plasmacytoma right now and suspect possible multiple myeloma?
I don't understand how they can be certain in telling her she has multiple myeloma just from the biopsy and without having any other tests yet.
Re: Multiple myeloma diagnosis from biopsy alone?
This discussion seems rather busy right now, so I'll just mention this quickly to clarify an important point.
Solitary plasmacytomas can be in the bone or they can be in the soft tissue. Multibilly is correct that, when they're in the bone, they're known as solitary bone plasmacytomas. When they are in soft tissue, they are solitary extramedullary ("outside the bone") plasmacytomas. I believe it is more common to see a solitary plasmacytoma in the bone, but you can have a solitary plasmacytoma in soft tissue.
Solitary plasmacytomas can be in the bone or they can be in the soft tissue. Multibilly is correct that, when they're in the bone, they're known as solitary bone plasmacytomas. When they are in soft tissue, they are solitary extramedullary ("outside the bone") plasmacytomas. I believe it is more common to see a solitary plasmacytoma in the bone, but you can have a solitary plasmacytoma in soft tissue.
Re: Multiple myeloma diagnosis from biopsy alone?
Vicki,
Yes, there should be more testing done to confirm a diagnosis, including the lab tests I mentioned and a bone marrow biopsy. This thread might help you more on the diagnosis of this situation:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
Yes, there should be more testing done to confirm a diagnosis, including the lab tests I mentioned and a bone marrow biopsy. This thread might help you more on the diagnosis of this situation:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
Updated Definition and Classification of Plasmacytoma
Sometimes patients present with just a single plasma cell tumor in their body. This is called a solitary plasmacytoma. When the tumor presents as a single bone lesion, it is called a solitary bone plasmacytoma. When it occurs as a single tumor outside the bone, it is a solitary extramedullary plasmacytoma.
True solitary plasmacytoma without any clonal plasma cells in the bone marrow has an excellent chance of cure, and needs to be differentiated from more advanced stages of the disease as well as myeloma.
The IMWG recommends the term “solitary plasmacytoma with minimal marrow involvement” if bone marrow clonal cells are present but less than 10 percent. Patients with a single bone lesion or extramedullary plasmacytoma who have 10 percent or more clonal bone marrow plasma cells, on the other hand, will be considered as having multiple myeloma".
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma diagnosis from biopsy alone?
I see a myeloma specialist at West Penn Hospital, in Pittsburgh, and his associate for regular treatment / chemo and Zometa at Jefferson Cancer Center in Jefferson Hills. I am very pleased with the care I am receiving (since 2013).
If you want to contact me privately, I would be happy to talk to you.
If you want to contact me privately, I would be happy to talk to you.
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Kathy225
Re: Multiple myeloma diagnosis from biopsy alone?
Thanks for quoting that section of Dr. Rajkumar's article, Multibilly. I think it was where I first read about solitary extramedullary plasmacytomas. As I said earlier, I don't think they are as common as solitary bone plasmacytomas. At least you don't hear about them as often.
Vicki - I also agree with Multibilly that additional tests would have to show signs of myeloma for a proper diagnosis of multiple myeloma in your mother's case.
Vicki - I also agree with Multibilly that additional tests would have to show signs of myeloma for a proper diagnosis of multiple myeloma in your mother's case.
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