Hi, I'm still being "worked up" but I'm wondering about my MRI report, which seems to conflict with what my doctor told me. Can anyone clarify?
The MRI report reads, "heterogeneous bone marrow with multifocal enhancing soft tissue masses, favored to represent multiple myeloma with plasmocytomas. Bone marrow is diffusely heterogeneous. Multiple discreet T1 hyperintense, enhancing lesions seen in the sacrum and iliac bones."
The doctor told me that I most likely had smoldering multiple myeloma or possibly MGUS, but everything I've read seems to to say that the presence of lesions means that it is not either of these, but more likely, full-blown myeloma.
I would rather know instead of holding out false hope and being disappointed again. I'd appreciate any insights or information.
Thank you.
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Re: New to this, confused, and have questions
I strongly recommend you speak to an oncologist specializing in myeloma. There is a great deal of information here on the Beacon but ultimately your questions need first be answered by your specialist.
I have only recently been diagnosed after the usual "workup" (CBC, bone marrow biopsy, skeletal survey x-ray) from MGUS to Multiple Myeloma and am awaiting a PET/CT Scan. Chemo starts in about 10 days.
Confusion can lead to unfounded fear and anxiety. Get your facts, ask lots of question and remember "Knowledge is power".
Gruncle
I have only recently been diagnosed after the usual "workup" (CBC, bone marrow biopsy, skeletal survey x-ray) from MGUS to Multiple Myeloma and am awaiting a PET/CT Scan. Chemo starts in about 10 days.
Confusion can lead to unfounded fear and anxiety. Get your facts, ask lots of question and remember "Knowledge is power".
Gruncle
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Gruncle - Name: Doug
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Mar.14, 2014
- Age at diagnosis: 64
Re: New to this, confused, and have questions
Hi Robert,
A couple of things
1. As Gruncle says, make sure you are working with a specialist
2. I have found from personal experience that there is a great deal of subjectivity when it comes to radiologists interpreting one's images. When I was first diagnosed, I was told I had lesions on my xray, only to find that two other radiologists couldn't find a single trace of a lesion on my image report...and I was also later confirmed to be lesion-free after getting a PET/CT. As one top multiple myeloma specialist once told me, as soon as some radiologists see the word "multiple myeloma" on a patient's chart, they will often find lesions that just aren't there.
3. So, I might suggest seeking a second opinion of the MRI scan results from a radiologist on a multiple myeloma specialist's team.
4. I would also consider getting a PET/CT to confirm the presence of any cancerous lesions, since any cancerous lesions will pop up quite clearly as hot spots on a PET/CT. See figure 4 on this link to see just how obvious the appearance of a multiple myeloma lesion is on a PET/CT report.
http://jnm.snmjournals.org/content/53/7/1091.figures-only
5. If further tests and second opinions do confirm the presence of lesions, I would suggest turning your thoughts to being thankful that you caught these lesions at an early stage. As you probably have read on this forum, many folks are diagnosed with multiple myeloma after suffering very debilitating skeletal fractures and they can only wish that they had been diagnosed at a much earlier stage.
Take care
A couple of things
1. As Gruncle says, make sure you are working with a specialist
2. I have found from personal experience that there is a great deal of subjectivity when it comes to radiologists interpreting one's images. When I was first diagnosed, I was told I had lesions on my xray, only to find that two other radiologists couldn't find a single trace of a lesion on my image report...and I was also later confirmed to be lesion-free after getting a PET/CT. As one top multiple myeloma specialist once told me, as soon as some radiologists see the word "multiple myeloma" on a patient's chart, they will often find lesions that just aren't there.
3. So, I might suggest seeking a second opinion of the MRI scan results from a radiologist on a multiple myeloma specialist's team.
4. I would also consider getting a PET/CT to confirm the presence of any cancerous lesions, since any cancerous lesions will pop up quite clearly as hot spots on a PET/CT. See figure 4 on this link to see just how obvious the appearance of a multiple myeloma lesion is on a PET/CT report.
http://jnm.snmjournals.org/content/53/7/1091.figures-only
5. If further tests and second opinions do confirm the presence of lesions, I would suggest turning your thoughts to being thankful that you caught these lesions at an early stage. As you probably have read on this forum, many folks are diagnosed with multiple myeloma after suffering very debilitating skeletal fractures and they can only wish that they had been diagnosed at a much earlier stage.
Take care
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New to this, confused, and have questions
When the rest of the labs come in that you are being worked up for, particularly the blood work, you should get the answers to the question of MGUS, smoldering myeloma, or active myeloma and what stage you are looking for. Most hematologist/oncologists, even the general ones, should be able to do this.
As Gruncle and Multibilly have said, though, if you can get access to a specialist in myeloma for treatment or a second opinion that can be very helpful. There can be a wide difference in opinion between hematologist/oncologists in how to treat myeloma, even among those who specialize in it, but the majority of these approaches have been shown to have some meaningfully successful results. Which is best may be up for some debate and still in clinical trial study. Myeloma can be a very individual disease. What may be good for one person may not be the best for another. This is where a specialist can be really helpful.
Once your doctors get the labs and explain the results to you, if you are uncertain still or have doubts, there are lots of knowledgeable people here (including the Beacon's medical advisors) who maybe be able to help clarify the results and staging for you.
As Gruncle and Multibilly have said, though, if you can get access to a specialist in myeloma for treatment or a second opinion that can be very helpful. There can be a wide difference in opinion between hematologist/oncologists in how to treat myeloma, even among those who specialize in it, but the majority of these approaches have been shown to have some meaningfully successful results. Which is best may be up for some debate and still in clinical trial study. Myeloma can be a very individual disease. What may be good for one person may not be the best for another. This is where a specialist can be really helpful.
Once your doctors get the labs and explain the results to you, if you are uncertain still or have doubts, there are lots of knowledgeable people here (including the Beacon's medical advisors) who maybe be able to help clarify the results and staging for you.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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