Hi
I was just wondering if anyone here has had a single lytic lesion on skeletal survey and is still classified as MGUS?
My survey was 3/4 years ago, and all the docs say that I'm MGUS still but they are keeping a close eye on me with 3 monthly appointments. I've also been anaemic since last year but I am on iron tablets, which are keeping my hb levels borderline after 5 months of taking them. I'm IgA lambda with SFLC results 86 the last time they were done a few months ago.
Angelina
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Re: Lytic lesion but still MGUS?
Hi Angelina,
Are you absolutely sure that the spots in your bone that you're calling "lytic lesions" are, in fact, "lytic lesions"?
You mentioned in earlier discussions of your situation – such as "Am I smoldering or MGUS still?" (Oct 30, 2014) and "Hi from Plymouth England - MGUS diagnosed 3 years ago" (Aug 23, 2014) – that your doctors have chosen to put you under observation, rather than treat you either for multiple myeloma or even a solitary bone plasmacytoma (i.e., a lytic lesion due to bone destruction by monoclonal plasma cells). You also mention that the lesion was found in your skull.
It seems to me that what may have been called a "lytic lesion" in an initial radiology report may have been judged by other doctors since then to be something other than a plasmacytoma. This isn't unusual, apparently, when it comes to lesions found in the skull. Dr. Shain recently explained here in the forum that, often, what look like one or more lesions in an x-ray of the skull later turn out, on further analysis, to be "venous lakes":
Given the number of different doctors you've seen about your case, it wouldn't surprise me if what you've described as a "lytic lesion" is, in fact, something else.
Even if the lesion(s) in your skull are lytic, that doesn't necessarily mean that abnormal plasma cells are the cause. If you poke around on the Internet a bit, you'll find that lytic lesions can be caused by things other than myeloma, including things such a benign bone cysts and bone infections.
If, however, abnormal plasma cells are the cause of the lesion, then I don't think MGUS would not be the correct diagnosis. Instead, you would have a solitary bone plasmacytoma.
I hope this clarifies things a bit.
Are you absolutely sure that the spots in your bone that you're calling "lytic lesions" are, in fact, "lytic lesions"?
You mentioned in earlier discussions of your situation – such as "Am I smoldering or MGUS still?" (Oct 30, 2014) and "Hi from Plymouth England - MGUS diagnosed 3 years ago" (Aug 23, 2014) – that your doctors have chosen to put you under observation, rather than treat you either for multiple myeloma or even a solitary bone plasmacytoma (i.e., a lytic lesion due to bone destruction by monoclonal plasma cells). You also mention that the lesion was found in your skull.
It seems to me that what may have been called a "lytic lesion" in an initial radiology report may have been judged by other doctors since then to be something other than a plasmacytoma. This isn't unusual, apparently, when it comes to lesions found in the skull. Dr. Shain recently explained here in the forum that, often, what look like one or more lesions in an x-ray of the skull later turn out, on further analysis, to be "venous lakes":
Given the number of different doctors you've seen about your case, it wouldn't surprise me if what you've described as a "lytic lesion" is, in fact, something else.
Even if the lesion(s) in your skull are lytic, that doesn't necessarily mean that abnormal plasma cells are the cause. If you poke around on the Internet a bit, you'll find that lytic lesions can be caused by things other than myeloma, including things such a benign bone cysts and bone infections.
If, however, abnormal plasma cells are the cause of the lesion, then I don't think MGUS would not be the correct diagnosis. Instead, you would have a solitary bone plasmacytoma.
I hope this clarifies things a bit.
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JimNY
Re: Lytic lesion but still MGUS?
Jim
Thanks for your prompt and informative reply. It was described as a lytic lesion on a letter from my consultant and also was used when a doctor told me what they had found.
I am going to ask for more clarification when I go to next appointment. I don't have a lot of faith in the hospital I attend as my brother died there due to a catalogue of mistakes which the hospital later admitted, but it's the only hospital in the area.
Some of the doctors are great, and my consultant is a myeloma specialist I believe. However, I have only seen her twice in four years, and it is the lack of continuity and seeing different docs each appointment that worries me.
Angelina
Thanks for your prompt and informative reply. It was described as a lytic lesion on a letter from my consultant and also was used when a doctor told me what they had found.
I am going to ask for more clarification when I go to next appointment. I don't have a lot of faith in the hospital I attend as my brother died there due to a catalogue of mistakes which the hospital later admitted, but it's the only hospital in the area.
Some of the doctors are great, and my consultant is a myeloma specialist I believe. However, I have only seen her twice in four years, and it is the lack of continuity and seeing different docs each appointment that worries me.
Angelina
Re: Lytic lesion but still MGUS?
I also have the same diagnosis. The radiologist's report of my total body scan says I have two lesions, one on my skull, for which he suggests further scans. The other lesion is in my arm and he refers to it as lytic in the detail section and in the summary.
The hematologist / oncologist said she initially thought I had multiple myeloma, but after reviewing the details of my blood tests, she decided I had MGUS. She said that I would be much more anemic if I had multiple myeloma.
I am trying to figure out where to go to get a referral. I tried to get my internist to order another type of scan, she wouldn't. Then I wanted to see the multiple myeloma specialist at the same hospital, they told me they don't allow second opinions in the same hospital.
The hematologist / oncologist said she initially thought I had multiple myeloma, but after reviewing the details of my blood tests, she decided I had MGUS. She said that I would be much more anemic if I had multiple myeloma.
I am trying to figure out where to go to get a referral. I tried to get my internist to order another type of scan, she wouldn't. Then I wanted to see the multiple myeloma specialist at the same hospital, they told me they don't allow second opinions in the same hospital.
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ShihtzuJane
Re: Lytic lesion but still MGUS?
Jane,
That's unfortunate regarding your hospital's policy on getting a second opinion.
Be clear that not every one with multiple myeloma presents with anemia. See:
"Experts Develop Guidelines For Treating Anemia In Multiple Myeloma Patients (IMW 2011)," The Myeloma Beacon, May 23, 2011.
Do you have any other options for seeking a second opinion from a specialist at a different hospital? If so, I would strongly suggest you seek out a second opinion elsewhere.
That's unfortunate regarding your hospital's policy on getting a second opinion.
Be clear that not every one with multiple myeloma presents with anemia. See:
"Experts Develop Guidelines For Treating Anemia In Multiple Myeloma Patients (IMW 2011)," The Myeloma Beacon, May 23, 2011.
It is estimated that 30 percent to 60 percent of myeloma patients have anemia at the time of diagnosis"
Do you have any other options for seeking a second opinion from a specialist at a different hospital? If so, I would strongly suggest you seek out a second opinion elsewhere.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Lytic lesion but still MGUS?
I have one lesion on the sacrum found incidentally by MRI. My local onc said I have multiple myeloma (history of MGUS for 7 years, abnormal FLC, but plasma cells only 5% by BMB).
I went and saw a myeloma specialist in Seattle. He says I need a full body PET scan and that, if there are more lesions, then it's multiple myeloma, but if this is the only one, it's still MGUS. If there is only one lesion that turns out very "bright" or "hot" on PET scan, then the lesion should be treated by radiation.
Don't know if that helps. Like many here, I think it's worth traveling to see a multiple myeloma specialist.
I went and saw a myeloma specialist in Seattle. He says I need a full body PET scan and that, if there are more lesions, then it's multiple myeloma, but if this is the only one, it's still MGUS. If there is only one lesion that turns out very "bright" or "hot" on PET scan, then the lesion should be treated by radiation.
Don't know if that helps. Like many here, I think it's worth traveling to see a multiple myeloma specialist.
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pamallyn - Name: Pam Allyn
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 56
Re: Lytic lesion but still MGUS?
Pamallyn,
What you are describing sounds like the situation where one could have a "solitary plasmacytoma".
You are right that one would likely pick this up with a PET/CT, but my understanding is that you would then biopsy that area to determine the nature of the plasmacytoma before doing any radiation treatment.
See:
"Solitary Bone Plasmacytoma – What Every Patient Should Know," The Myeloma Beacon, May 4, 2012.
As always, I'm not a doc, so verify everything with your doc.
What you are describing sounds like the situation where one could have a "solitary plasmacytoma".
You are right that one would likely pick this up with a PET/CT, but my understanding is that you would then biopsy that area to determine the nature of the plasmacytoma before doing any radiation treatment.
See:
"Solitary Bone Plasmacytoma – What Every Patient Should Know," The Myeloma Beacon, May 4, 2012.
As always, I'm not a doc, so verify everything with your doc.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Lytic lesion but still MGUS?
Thanks, Multibilly. I had no idea that not everyone with multiple myeloma has acute anemia. I have a friend from choir who is a nurse in the cancer center. I told her last night about me being denied a second opinion. She has already appealed to the patient care coordinator.
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ShihtzuJane
8 posts
• Page 1 of 1