I had my third skeletal survey in three years today. In my mind they are worthless.
The only tests that showed any lesions in the past were an MRI, ordered by my primary due to chronic neck pain, and performed only days after my skeletal survey. The xray skeletal survey read "normal no lesions", while the MRI reported lesions in some of my cervical vertebrae and hot spots in others.
A similar occurrence happened at NIH . The xray survey was followed up by an CT scan. The CT scan revealed hot spots throughout all my vertebrae, and pathological fracture of my 10th rib. Even the fractured rib did not show up on xray. I had asked my multiple myeloma specialist as well as my local oncologist if I could have a CT or MRI instead, since my lesions don't get picked up on xray. Both said the standard of care is skeletal surveys.
So today I appeased my oncologist and again had a skeletal survey. I was told by the tech that they don't include the rib cage on their protocol for skeletal survey. Does this make any sense when the spine and ribs are the two most common areas for bone lesions?. I am frustrated as I feel I underwent unnecessary radiation.
The xray tech said he didn't think the full body CT scan exposes one to any more radiation than the xray skeletal survey. At least the CT sheds some information and I can justify the exposure to radiation. I know other multiple myeloma institutions use CT or PET scans.
I meet with my local oncologist next week and will state my concerns and next time will stand firm and skip the skeletal survey or insist on a CT scan. Have others experienced the omission of rib films when they had their skeletal survey?
I am certain my Medicare insurance covers a CT and /or MRI once a year, so I know it is not the $$$$ that determines what kind of test I have.
Forums
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Skeletal survey - what's the value?
So sorry to hear about your frustrations with the imaging work you've been receiving regularly, Tori.
One thing that might be worth keeping in mind as you think about what you want to do is that the different approaches to imaging provide different kinds of information. As I understand it, xrays and CT scans mainly tell you whether there are any weaknesses or cracks in the outer, hard part of the bone. MRI, on the other hand, tells you if there are abnormal areas of the bone marrow, and also is good, I believe, in picking up tumors (plasmacytomas) outside the bone in the organs and other tissue.
I always just remember it as xrays and CT scans are good for imaging "hard" stuff, and MRI is good for imaging "soft" stuff.
I'm not so sure about PET scans. I think they are closer to MRI scans in terms of what they are best at picking up (i.e., "soft stuff"). But I think they also can provide some insights into damage to the outer part of the bone, particularly if it is due to tumors.
Hope this helps a bit.
One thing that might be worth keeping in mind as you think about what you want to do is that the different approaches to imaging provide different kinds of information. As I understand it, xrays and CT scans mainly tell you whether there are any weaknesses or cracks in the outer, hard part of the bone. MRI, on the other hand, tells you if there are abnormal areas of the bone marrow, and also is good, I believe, in picking up tumors (plasmacytomas) outside the bone in the organs and other tissue.
I always just remember it as xrays and CT scans are good for imaging "hard" stuff, and MRI is good for imaging "soft" stuff.
I'm not so sure about PET scans. I think they are closer to MRI scans in terms of what they are best at picking up (i.e., "soft stuff"). But I think they also can provide some insights into damage to the outer part of the bone, particularly if it is due to tumors.
Hope this helps a bit.
Re: Skeletal survey - what's the value?
Hey Tori,
Hope you are doing well!
I tend to agree with you.
PET/CTs do in fact utilize much more radiation than an xray skeletal survey. A PET/CT can generate about 7 mSvs (a high res scan will generate upwards of 30 mSvs). In contrast, a full body xray generates a fraction of that radiation (about 1.8 mSv). Apparently there are lower dose PET/CT imaging modes that can be used, but I have no idea if the clinics I go to utilize these modalities? (see first article below).
Note that we get about 3 mSv of ionizing radiation each year from the environment we live in (most of it coming from radon gas in our homes). The average American gets about the same amount each year from various medical imaging exposure (a stunning figure, I think). See second article.
http://www.medpagetoday.com/clinical-context/MultipleMyeloma/32499
http://snmmi.files.cms-plus.com/Fahey_PAAB_Risk_May2012_final.pdf
Also, note that the effects from radiation exposure are known to be cumulative. I am therefore becoming more aggressive about questioning my doc about just routinely signing up for an xray survey every 6 months, especially given the flawed nature of xray surveys for multiple myeloma.
I was also distrustful of xrays after getting 3 completely different interpretations from 3 different radiologists on the same xray when I was first diagnosed.
I really wish I could get whole body MRIs in the state I live in. But since I can't, I might push to just do a PET/CT now and then, but not as frequently as what my doc is asking for wrt xrays.
Hope you are doing well!
I tend to agree with you.
PET/CTs do in fact utilize much more radiation than an xray skeletal survey. A PET/CT can generate about 7 mSvs (a high res scan will generate upwards of 30 mSvs). In contrast, a full body xray generates a fraction of that radiation (about 1.8 mSv). Apparently there are lower dose PET/CT imaging modes that can be used, but I have no idea if the clinics I go to utilize these modalities? (see first article below).
Note that we get about 3 mSv of ionizing radiation each year from the environment we live in (most of it coming from radon gas in our homes). The average American gets about the same amount each year from various medical imaging exposure (a stunning figure, I think). See second article.
http://www.medpagetoday.com/clinical-context/MultipleMyeloma/32499
http://snmmi.files.cms-plus.com/Fahey_PAAB_Risk_May2012_final.pdf
Also, note that the effects from radiation exposure are known to be cumulative. I am therefore becoming more aggressive about questioning my doc about just routinely signing up for an xray survey every 6 months, especially given the flawed nature of xray surveys for multiple myeloma.
I was also distrustful of xrays after getting 3 completely different interpretations from 3 different radiologists on the same xray when I was first diagnosed.
I really wish I could get whole body MRIs in the state I live in. But since I can't, I might push to just do a PET/CT now and then, but not as frequently as what my doc is asking for wrt xrays.
Last edited by Multibilly on Fri Mar 28, 2014 9:03 am, 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: Skeletal survey - what's the value?
As someone who recently had an unexpected clavicle break, I would say peace of mind would be a good reason. I had no warning that my clavicle was weakened and, after that experience, I couldn't help but wonder what else might be endangered.
Doctors are between a rock and a hard place in today's liability atmosphere and possibly your doctor wants to make sure he doesn't leave a stone unturned.
I wouldn't worry about the radiation. The consensus is that it isn't harmful at X-ray levels. After a bout with lung cancer I've been clean for 12 years and had at least 50 chest X-rays.
As far as PET goes, they do inject you with a dye that is radiated.
Doctors are between a rock and a hard place in today's liability atmosphere and possibly your doctor wants to make sure he doesn't leave a stone unturned.
I wouldn't worry about the radiation. The consensus is that it isn't harmful at X-ray levels. After a bout with lung cancer I've been clean for 12 years and had at least 50 chest X-rays.
As far as PET goes, they do inject you with a dye that is radiated.
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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 understanding is that the best way to determine active multiple myeloma (besides the usual immunoglobulin and biopsies) is the PT/CT scans. The MRI doesn't show if the disease is active or not. (At least that's what I was told). And, in comparison, the skeletal survey is of little value.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Skeletal survey - what's the value?
I think that the PET/CT scans are used especially for patients who are 'non secretory', and for whom the SPEP test and SFLC test does not show how their disease is progressing. They cost more than skeletal X-rays, which would be a factor in some cases. Also, if someone has more advanced disease, they may be monitored by PET/CT.
The skeletal survey is used at the time of diagnosis for the purposes of 'staging' the disease. I think that if lesions can be seen, the myeloma is then considered to be stage 1 or higher, compared to being classified as SMM. I am sure that new patients would like to know more about the state of their bones than what the skeletal survey can show, especially if they are borderline in being active or SMM. If the X-rays already show a lot of lesions, is there any benefit in doing more scans for the purposes of initiating treatments?
One of the links that MB provided state that with the use of more detailed imaging, many patients would have their disease 'upstaged', i.e. from stage 1 to stage 2, for example.
The skeletal survey is used at the time of diagnosis for the purposes of 'staging' the disease. I think that if lesions can be seen, the myeloma is then considered to be stage 1 or higher, compared to being classified as SMM. I am sure that new patients would like to know more about the state of their bones than what the skeletal survey can show, especially if they are borderline in being active or SMM. If the X-rays already show a lot of lesions, is there any benefit in doing more scans for the purposes of initiating treatments?
One of the links that MB provided state that with the use of more detailed imaging, many patients would have their disease 'upstaged', i.e. from stage 1 to stage 2, for example.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Skeletal survey - what's the value?
I agree with Coachhoke, that the PET/CTs are unparalleled for showing active disease (cancer cells metabolize glucose faster than normal cells, so the radioactive Kool-Aid they give you as part of a PET/CT gets absorbed by the cancerous areas on your skeleton and then shows up as hotspots on your imaging results).
I would love to have the option of being screened with non-radiating MRIs and then validating any suspicious MRI findings with a subsequent PET/CT....and throw the x-ray surveys under the bus
I would love to have the option of being screened with non-radiating MRIs and then validating any suspicious MRI findings with a subsequent PET/CT....and throw the x-ray surveys under the bus
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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?
As Multibilly said, it would be news to me that the full body CT scan did not expose the body to more radiation than an X-ray skeletal survey. The tech shouldn’t have to “think” -- he should know this in his job. I would not trust what he says and ask a radiologist or your oncologist. I think you are right to be concerned and ask questions about your radiation exposure from CT, PET, and X-rays, and question if you are getting any unnecessary or redundant screenings.
I get the impression that total radiation exposure is not tracked that well, especially when a patient may be seeing multiple doctors at different institutions that do not know what the other is doing. In these cases, just who’s responsibility is it to track total dosage to a patient and what the risk vs. benefit is? The patient may have to rely on themselves. It might be good to ask if records can be transferred between institutions instead of getting new screenings.
From reading the paper and news over the years, I see that lawsuits against doctors because they did not order a MRI, X-ray, or CT scan that a jury or court determined would have found a problem are not that uncommon, and this may drive doctors to order more screenings than they would otherwise to avoid possible litigation. This is probably not much of an issue for most patients, but, if I was having a lot of screenings done for a medical condition, I would not be uncomfortable asking these questions to my medical providers, and they should be able to talk about the safety aspects of the screenings.
I started going to a dentist again a few years ago and noticed that when X-rays were taken, I did not have to go to a separate room, and the technician did them right in the examination chair staying in the room with me when the images were taken. They did not use any film and the images were digital.
I asked about this, and the technician said that X-ray machines had improved significantly and they now can get good images with a lot less radiation and it was safe to take them in the main examination room. I suspect that similar improvements have been made over the years in hospitals. All my X-rays have been digital. Maybe radiation from screenings is not as big an issue as it was in the past.
I get the impression that total radiation exposure is not tracked that well, especially when a patient may be seeing multiple doctors at different institutions that do not know what the other is doing. In these cases, just who’s responsibility is it to track total dosage to a patient and what the risk vs. benefit is? The patient may have to rely on themselves. It might be good to ask if records can be transferred between institutions instead of getting new screenings.
From reading the paper and news over the years, I see that lawsuits against doctors because they did not order a MRI, X-ray, or CT scan that a jury or court determined would have found a problem are not that uncommon, and this may drive doctors to order more screenings than they would otherwise to avoid possible litigation. This is probably not much of an issue for most patients, but, if I was having a lot of screenings done for a medical condition, I would not be uncomfortable asking these questions to my medical providers, and they should be able to talk about the safety aspects of the screenings.
I started going to a dentist again a few years ago and noticed that when X-rays were taken, I did not have to go to a separate room, and the technician did them right in the examination chair staying in the room with me when the images were taken. They did not use any film and the images were digital.
I asked about this, and the technician said that X-ray machines had improved significantly and they now can get good images with a lot less radiation and it was safe to take them in the main examination room. I suspect that similar improvements have been made over the years in hospitals. All my X-rays have been digital. Maybe radiation from screenings is not as big an issue as it was in the past.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Skeletal survey - what's the value?
Maybe why we are prone to secondary cancers isn't the Revlimid, but the excess radiation that we are exposed to
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Skeletal survey - what's the value?
coachhoke wrote: "Maybe why we are prone to secondary cancers isn't the Revlimid, but the excess radiation that we are exposed to."
There was a research study posted on the Beacon a few weeks ago that found the secondary cancers were mostly occurring when using Revlimid and melphalan at the same time, but that Revlimid used without melphalan did not show any significant increase in secondary cancer risk.
Also the secondary cancer risk thought to be linked to Revlimid was lymphoma. I do not know that cancers resulting from radiation exposure would be lymphoma-specific, but more of a broader range of cancers.
There was a research study posted on the Beacon a few weeks ago that found the secondary cancers were mostly occurring when using Revlimid and melphalan at the same time, but that Revlimid used without melphalan did not show any significant increase in secondary cancer risk.
Also the secondary cancer risk thought to be linked to Revlimid was lymphoma. I do not know that cancers resulting from radiation exposure would be lymphoma-specific, but more of a broader range of cancers.
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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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