DanielR, I don't think you took over the thread - your contributions and questions were very relevant and certainly helped me understand the pros/cons of various imaging techniques. I still wonder, however, whether there are any non-imaging measures, apart from the gross level of calcium in one's blood, to help determine whether the bone destruction is ongoing, or lessening - sort of analogous to the level of light chains my oncologist measures monthly to track the cancer load.
TerryH, thanks so much for posting the link to Dr. Kapoor's article. I too was not aware of it.
Coachhoke, thanks for all the great info on PET/CT and your experience with it.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Tracking progression of bone damage
I don't think you've taken over the thread- these are important questions!
One other key factor to note is that different kinds of bone damage look differently on MRI. Usually a good radiologist can tell the difference between, for example, arthritis damage and tumor damage, bc they look very different. This is where the "art" of medicine comes in. Each patient is a little different, each MRI is a little different, each radiologist is a little different. The radiologist is trying to recognize patterns in the images that correlate with something they've seen before, or something described in the medical literature. Sometimes the MRI images fit perfectly and there's no real question, and sometimes the radiologist has to stretch things a little to make it fit.
When I run into sticky situations like this it helps me to ask about "confidence level", as in, "how confident are you in these findings?"
One other key factor to note is that different kinds of bone damage look differently on MRI. Usually a good radiologist can tell the difference between, for example, arthritis damage and tumor damage, bc they look very different. This is where the "art" of medicine comes in. Each patient is a little different, each MRI is a little different, each radiologist is a little different. The radiologist is trying to recognize patterns in the images that correlate with something they've seen before, or something described in the medical literature. Sometimes the MRI images fit perfectly and there's no real question, and sometimes the radiologist has to stretch things a little to make it fit.
When I run into sticky situations like this it helps me to ask about "confidence level", as in, "how confident are you in these findings?"
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Tracking progression of bone damage
Daniel,
My understanding if the advantages and disadvantages of the different imaging techniques for myeloma are exactly as Tracy J described. One misconception I sometimes see when people talk about PET/CT scan though is that they only “light up” cancer. That is not true. The tissues in the body that have a high metabolic rate consume the radioactive tracer that is injected as well as well as the cancer and also “light up”. I saw this in my own images as well as those readily available on the internet. In my image which the radiologist read as being clean I saw the brain was very light up, and I could see other hot spots as well the corresponding to various glands and organs that naturally have high metabolic activity like cancer cells do. An indication that these hot spots where normal and to be expected was often a symmetrical paring of hotspots corresponding to pairs of glands and organs located where they should be in the body. I also saw my bladder was a hot spot as it was accumulating the radioactive tracer element in my urine. The radiologist jobs and training is to look at all of this and sort out what is normal and expected to be there from what is not. The technician that did my PET/CT scan showed me an example of a PET/CT scan that even to my untrained eye clearly had a lot of cancer spread through the body, it make me feel a lot better that mine looked nothing like that.
I believe concerns about the amount of radiation you are receiving and the risk and benefit associated with it is a valid question to ask. In the four years I have had myeloma I have only had one PET/CT scan and that was two months ago. Leading up to the PET/CT scan I did quite a bit of research into the procedure mostly from a scientific curiosity perspective which is really interesting from a physics perspective. I read the amount of radiation from a typical PET/CT scan is about the same amount the average person will receive from background radiation in a year. So you get about the equivalent of a years’ worth of radiation from natural sources in a few hours. In my opinion nothing to lose sleep about but also nothing to take casually especially if receiving multiple CT/SCANs overtime. I used to be an engineering junior officer on a nuclear submarine in the navy. The engineering department crew received quite a bit of training on working with radiation, radioactive contamination, and associated risk. From that experience I learned that while radiation is nothing to be taken lightly the average person really does not have a feel for or the knowledge to understand the risk. It all just seems scary and to be avoided all cost. I have found it somewhat amusing in my life to see people talking to me about some irrational fear of radiation which the clearly did not understand while puffing away on a cigarette, drinking excessively ,eating crappy food, or some other life style choice that was taking more years off their life than the radiation they were fearing.
I feel a PET/CT scan should be done for a reason and not just as part of a routine schedule like a lot of other lab work is done. I believe even finding a negative result does not mean a PET/CT scan was a waste of time, knowing there are no active lesions in important information that can guide treatment approaches. Having only had one PET/CT scan in four years is a lot less than most so I am not worried at all my doctor is recklessly ordering them for me, the opposite may more of the case. While I believe in involving patients in treatment decisions, in the end I feel weighing the risk vs benefit of PET/CT involves considering a number of factors that are simply beyond my knowledge to make an intelligent decision on so I trust my doctor. At the same time, while I believe it is rare, I believe there are doctors who make decisions and treatments based on billing revenue and if I suspected this was the case for me I would look elsewhere for a doctor. I have never had the feeling though.
I hope you find the answers to your back problems you are looking for,
Eric
My understanding if the advantages and disadvantages of the different imaging techniques for myeloma are exactly as Tracy J described. One misconception I sometimes see when people talk about PET/CT scan though is that they only “light up” cancer. That is not true. The tissues in the body that have a high metabolic rate consume the radioactive tracer that is injected as well as well as the cancer and also “light up”. I saw this in my own images as well as those readily available on the internet. In my image which the radiologist read as being clean I saw the brain was very light up, and I could see other hot spots as well the corresponding to various glands and organs that naturally have high metabolic activity like cancer cells do. An indication that these hot spots where normal and to be expected was often a symmetrical paring of hotspots corresponding to pairs of glands and organs located where they should be in the body. I also saw my bladder was a hot spot as it was accumulating the radioactive tracer element in my urine. The radiologist jobs and training is to look at all of this and sort out what is normal and expected to be there from what is not. The technician that did my PET/CT scan showed me an example of a PET/CT scan that even to my untrained eye clearly had a lot of cancer spread through the body, it make me feel a lot better that mine looked nothing like that.
I believe concerns about the amount of radiation you are receiving and the risk and benefit associated with it is a valid question to ask. In the four years I have had myeloma I have only had one PET/CT scan and that was two months ago. Leading up to the PET/CT scan I did quite a bit of research into the procedure mostly from a scientific curiosity perspective which is really interesting from a physics perspective. I read the amount of radiation from a typical PET/CT scan is about the same amount the average person will receive from background radiation in a year. So you get about the equivalent of a years’ worth of radiation from natural sources in a few hours. In my opinion nothing to lose sleep about but also nothing to take casually especially if receiving multiple CT/SCANs overtime. I used to be an engineering junior officer on a nuclear submarine in the navy. The engineering department crew received quite a bit of training on working with radiation, radioactive contamination, and associated risk. From that experience I learned that while radiation is nothing to be taken lightly the average person really does not have a feel for or the knowledge to understand the risk. It all just seems scary and to be avoided all cost. I have found it somewhat amusing in my life to see people talking to me about some irrational fear of radiation which the clearly did not understand while puffing away on a cigarette, drinking excessively ,eating crappy food, or some other life style choice that was taking more years off their life than the radiation they were fearing.
I feel a PET/CT scan should be done for a reason and not just as part of a routine schedule like a lot of other lab work is done. I believe even finding a negative result does not mean a PET/CT scan was a waste of time, knowing there are no active lesions in important information that can guide treatment approaches. Having only had one PET/CT scan in four years is a lot less than most so I am not worried at all my doctor is recklessly ordering them for me, the opposite may more of the case. While I believe in involving patients in treatment decisions, in the end I feel weighing the risk vs benefit of PET/CT involves considering a number of factors that are simply beyond my knowledge to make an intelligent decision on so I trust my doctor. At the same time, while I believe it is rare, I believe there are doctors who make decisions and treatments based on billing revenue and if I suspected this was the case for me I would look elsewhere for a doctor. I have never had the feeling though.
I hope you find the answers to your back problems you are looking for,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
23 posts
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