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Re: Skeletal survey - what's the value?
We face radiation in the environment so it cannot be the cause by itself. There is a threshold that is considered unsafe and today's medical imaging equipment doesn't pass that.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Skeletal survey - what's the value?
My insurance requires a skeletal X-ray prior to any MRI or PET scan. I agree they are worthless. MRI always shows lesions in me that the X-Ray never saw.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Skeletal survey - what's the value?
Another couple of good articles on imaging wrt myeloma:
http://jco.ascopubs.org/content/29/14/1907.full
http://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=250
From the above NCCN Link:
"....It is also increasingly recognized, that the classical definition of smoldering myeloma using certain tests such as plain x-rays is outdated".
And for completeness, tying in this other thread
https://myelomabeacon.org/forum/type-imaging-smoldering-myeloma-t3023.html
http://jco.ascopubs.org/content/29/14/1907.full
http://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=250
From the above NCCN Link:
"....It is also increasingly recognized, that the classical definition of smoldering myeloma using certain tests such as plain x-rays is outdated".
And for completeness, tying in this other thread
https://myelomabeacon.org/forum/type-imaging-smoldering-myeloma-t3023.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Skeletal survey - what's the value?
I have to point out to all who think they are worthless that they do show the tumors and their size. From what I'm told, they don't show how involved in the bone the tumor is. The size revealed in an x-ray can reveal whether a more intensive view is needed.
This is what I've been told and, as someone who leaned on a counter and had a clavicle snap, I wish I had had one sooner. I simply didn't have enough information to know were my relapse was.
X rays are much cheaper and, while it would be nice if we could all have the information we want, doctors don't necessarily need it to treat us.
This is what I've been told and, as someone who leaned on a counter and had a clavicle snap, I wish I had had one sooner. I simply didn't have enough information to know were my relapse was.
X rays are much cheaper and, while it would be nice if we could all have the information we want, doctors don't necessarily need it to treat us.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Skeletal survey - what's the value?
Interesting and relevant read in this recent article. http://emedicine.medscape.com/article/391742-overview
What popped out at me was the 30% figure below:
--from above article--
Limitations of techniques
The skeletal survey has limitations. Most importantly, a large number of patients diagnosed with asymptomatic myeloma may have radiographically occult myeloma deposits. At least 30% cancellous bone loss is required to visualize an intramedullary destructive process, such as myeloma, with radiographs. In addition, myeloma is a disease of older patients; the disease can present with diffuse demineralization, which may be indistinguishable from the pattern found in patients with simple senile osteoporosis.
Magnetic resonance imaging (MRI) has been suggested as an additional imaging examination in patients with myeloma. MRI has the advantage of rapidity and sensitivity for the presence of disease; however, specificity is limited. Whole body imaging is preferred but if this is not possible, at least an MRI examination of the spine should be done, because radiographically occult lesions or extramedullary lesions may be found that can change the stage and influence the need for therapeutic intervention.
What popped out at me was the 30% figure below:
--from above article--
Limitations of techniques
The skeletal survey has limitations. Most importantly, a large number of patients diagnosed with asymptomatic myeloma may have radiographically occult myeloma deposits. At least 30% cancellous bone loss is required to visualize an intramedullary destructive process, such as myeloma, with radiographs. In addition, myeloma is a disease of older patients; the disease can present with diffuse demineralization, which may be indistinguishable from the pattern found in patients with simple senile osteoporosis.
Magnetic resonance imaging (MRI) has been suggested as an additional imaging examination in patients with myeloma. MRI has the advantage of rapidity and sensitivity for the presence of disease; however, specificity is limited. Whole body imaging is preferred but if this is not possible, at least an MRI examination of the spine should be done, because radiographically occult lesions or extramedullary lesions may be found that can change the stage and influence the need for therapeutic intervention.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Skeletal survey - what's the value?
And another article:
http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=55338
Paraphrasing the first paragraph:
For myeloma or very osteolytic aggressive lesions, you can get 80% detection by skeletal xray survey.... PET/CT can be used to improve the detection of lytic bone lesions.
And then there is this article:
http://www.ncbi.nlm.nih.gov/pubmed/19074102
Given all the potential shortcomings of skeletal xay surveys in detecting multiple myeloma lesions outlined in this thread, I am simply having a hard time accepting the skeletal xray survey as being the current "gold standard" for imaging for multiple myeloma patients.
I'm going to be having a heart-to-heart with my onc this week on what kind of imaging and how frequently I should have it going forward.
http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=55338
Paraphrasing the first paragraph:
For myeloma or very osteolytic aggressive lesions, you can get 80% detection by skeletal xray survey.... PET/CT can be used to improve the detection of lytic bone lesions.
And then there is this article:
http://www.ncbi.nlm.nih.gov/pubmed/19074102
Given all the potential shortcomings of skeletal xay surveys in detecting multiple myeloma lesions outlined in this thread, I am simply having a hard time accepting the skeletal xray survey as being the current "gold standard" for imaging for multiple myeloma patients.
I'm going to be having a heart-to-heart with my onc this week on what kind of imaging and how frequently I should have it going forward.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Skeletal survey - what's the value?
I am interested in what you learn. when initially diagnosed I had both a skeletal survey and a PET scan. I had another PET scan several months later. Now after a transplant I was told that a skeletal survey every twelve months would be part of the monitoring regime.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Skeletal survey - what's the value?
Goldmine,
I met with my onc today and I presented him many of the same points made on this thread.
He agreed that xray surveys are flawed, but pointed out that they are inexpensive, easily approved by insurance and they will in fact catch lesions under many circumstances. So, one can’t just dismiss them entirely for an entire population of patients given the realities of our medical and insurance system.
Having said that, he was supportive of me having an MRI or PET/CT done for my next imaging go-around. He basically made the decision my call, which is great.
In my particular case, the real question is more around just when I would get imaged next since my markers aren’t suggesting I’ve got any underlying issues. We may just hold off until I see some sort of downturn in my numbers or some significant amount of time passes (TBD)… which is also what another prominent multiple myeloma specialist had suggested I do. Note that this may not be the right approach for everyone and that I am absolutely NOT advocating abandoning regularly scheduled screening. But it may be the right approach in my particular situation.
He also mentioned the issue of earlier and earlier radiological detection being a two-edged sword in my case. That is, would I really want to initiate treatment right away if a lesion was discovered a few months earlier by some imaging technique other than xray?
My local onc happens to share my philosophy that early treatment is not always necessarily a good thing (I have no high risk features and I could very well smolder for the rest of my life). To paraphrase him: “Why hurry into getting injected with toxic drugs and potentially starting to use up a finite number of my playing cards this early in the game?” Note that I’m not asking this rhetorical question to generate another heated thread on early versus delayed treatment… and I know all the arguments in favor of knocking down the disease as quickly and hard as possible. But it is something to consider wrt imaging, depending on your particular circumstance and what your insurance will end up covering image-wise.
We finally agreed that knowing if something was brewing sooner rather than later was a good thing and that it was ultimately my call on what I would do with the data. We will continue to revisit the timing of my next imaging (which will be PET/CT or an MRI) at my next visit in 2-3 months.
So, if you are adamant about wanting to use an imaging technique other than an xray survey, it may just be as simple as making a case for it with your doctor. What your insurance company will approve may be a different matter
I met with my onc today and I presented him many of the same points made on this thread.
He agreed that xray surveys are flawed, but pointed out that they are inexpensive, easily approved by insurance and they will in fact catch lesions under many circumstances. So, one can’t just dismiss them entirely for an entire population of patients given the realities of our medical and insurance system.
Having said that, he was supportive of me having an MRI or PET/CT done for my next imaging go-around. He basically made the decision my call, which is great.
In my particular case, the real question is more around just when I would get imaged next since my markers aren’t suggesting I’ve got any underlying issues. We may just hold off until I see some sort of downturn in my numbers or some significant amount of time passes (TBD)… which is also what another prominent multiple myeloma specialist had suggested I do. Note that this may not be the right approach for everyone and that I am absolutely NOT advocating abandoning regularly scheduled screening. But it may be the right approach in my particular situation.
He also mentioned the issue of earlier and earlier radiological detection being a two-edged sword in my case. That is, would I really want to initiate treatment right away if a lesion was discovered a few months earlier by some imaging technique other than xray?
My local onc happens to share my philosophy that early treatment is not always necessarily a good thing (I have no high risk features and I could very well smolder for the rest of my life). To paraphrase him: “Why hurry into getting injected with toxic drugs and potentially starting to use up a finite number of my playing cards this early in the game?” Note that I’m not asking this rhetorical question to generate another heated thread on early versus delayed treatment… and I know all the arguments in favor of knocking down the disease as quickly and hard as possible. But it is something to consider wrt imaging, depending on your particular circumstance and what your insurance will end up covering image-wise.
We finally agreed that knowing if something was brewing sooner rather than later was a good thing and that it was ultimately my call on what I would do with the data. We will continue to revisit the timing of my next imaging (which will be PET/CT or an MRI) at my next visit in 2-3 months.
So, if you are adamant about wanting to use an imaging technique other than an xray survey, it may just be as simple as making a case for it with your doctor. What your insurance company will approve may be a different matter
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Skeletal survey - what's the value?
Thanks for the info. I am not anxious to do another PET scan since there is a risk of radiation exposure over time with too many of those types of scans. It also is a pain in the butt since at the center where I am being treated you must go on a very strict low carb diet for three days and, until you have done that, you don't realize how restrictive it is.
Not sure about the value of a full body MRI which does not have the same risks and requires no special prep. I will have to look into that.
Not sure about the value of a full body MRI which does not have the same risks and requires no special prep. I will have to look into that.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Skeletal survey - what's the value?
I would say PET scan is best read on multiple myeloma. I have had 9 -- getting my 10th at the end of April.
I am non-secretory and feeling fine. No meds.
Stay strong.
I am non-secretory and feeling fine. No meds.
Stay strong.
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Gilbert Siegel
26 posts
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