I recently had a full body bone scan with contrast. I have had several before this. I always get a CD of the scan before I leave and I also get the report too. I need to see and read the report as well. When I read the report from this recent scan, it said NO abnormalities were found in Skull, chest and ribs, Spine, Arms, Pelvis and legs etc...
That's good news Right ?????? However, The bone scan was compared to a CT scan of the pelvis and abdomen I had 4 months ago. BTW, I have had all my scans done with the same imaging place since I was diagnosed with my cancer. They have everyone of them. In a CT scan you do not even see the skull, arms, or legs.
I am concerned to the results as noted because I have extreme pain in all of my joints, Shoulders, elbows, wrists and legs going on a year. Also I have Narcosis of the jaw from XJEAVA I took for several years and I have exposed dead jaw bone in my skull. I am going to start a Trials that requires this scan. This scan will also qualify me or not qualify me. So it's accuracy is real important.
I can see black clearly in every joint and in my mouth when I view the bone scan. I am definitely not a Dr. or a Radiologist that reads and understands these scans everyday, But I just can't digest why they would compare a Bone Scan with a CT scan and report all is good even that I do have dead bone in my mouth. I understand that the black I'm looking at in all my joints could maybe be Arthritis, But wouldn't you think the reader of the report should mention that? And why no mention of the Jaw?
My understanding of a Bone scan with contrast should identify Dead, Damaged, broken, diseased Bones and or Lesions.
Should I get them to re-read the scan by a different Dr. or am I wrong in my thinking about this?
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Esmitee...First..the most basic point. A dark spot on T99 Bone Scan May or May not be due to a bone metastasis. Any scar, inflammed area, wear and tear, old injury mark...osteoarthritis, any of such markings or flaw can appear on bone scan. That is why Bone Scan i s considered NON SPECIFIC.. meaning it does not show Bone Mets specifically. When a Radiologist wrote the report..he was only writing about whether he sees bone metastases or not....Hence he did not write any other detail. His goal was to only look for bone mets and compare with old scan and /or CT . Its good news that there are no bone mets.
Thank You Learn More, I am very happy No METS are present. I just can't understand why they would not mention anything else other Mets "IF" they do in fact see something else, because on my very 1st Bone scan, it was noted , that in my Skull, something was going on. I had and infection and had to get 2 teeth removed after the scan.
The bone scans you have are not just bone scans, they are bone/CT scans. A CT scan is always fused to a bone scan. So you are trying to compare a bone/CT to your previous CT. Bone scans detect bone OVERgrowth. So -"Dead, Damaged, broken, diseased Bones and or Lesions" but only if it caused significant overgrowth of bone. I don't know that much about ONJ, but if it only erodes jawbone (necrosis) without subsequent healing (overgrowth) it might not show up.
The report should mention all the lesions if they changed from previous scans. If there has been no change, it should only mention that.
A good radiologist report takes training and skill. A patient or doctor looking at it probably does not have the skill required to interpret it.
No Tall Allen, I'm not comparing it that way, The reader is. Like I said, I'm not a Radiologist. All I can see on the 5 other Full body bones scans is, They ALL are compared to past Full body bone scans, NOT past CT scans. And I usually have a CT scan at the same time I get the Bone scan. And those past reports did in fact mention "Finds" other than mets. The MONJ I have was diagnosed in 12/20. It has been worsening since then. When I asked the oral surgeon if that was my bone exposed in both sides of my mouth, He replied YES, it's your jaw bone that is dead and exposed. It's not healing, it's growing . I may need to have surgery and have it cut out. YIKES !!! That's one reason I'm concerned about this scan
That’s very concerning . I’m sorry that you have this jaw thing . I’m in osteopenia taking prolia now I have a fractured rib that my MO sees on my recent nuclear scan . All of my joints were lit up in disintegration .All painful too . The MO only cares that there are no signs of pc in me . He said” the prolia is working”! If so why the broken rib then ? . I feel like all of my joints are screaming . I asked my GP for gabatine and Celebrex but after reading the side effects ,heart attack stroke risk increased and the other possible violent thoughts or depression . No thanks ,I tossed them
Ouch LuLu700, Yes I hear you on the rib. Why if it's working (prolia)I was given the Xgeava very shortly after I had 10 rounds of chemo and was told by my Onco that it's to make my bones stronger. I work in construction and he was worried about me damaging myself. He said my bones were weak after the chemo, I was taking monthly injections up until 11/20 then stopped when the MNOJ started . Besides the bone death in my mouth, My jaws "Snap" at where they are hinged every time I chew. So bad, you can actually hear the snapping if you were next to me. Very painful too. It's getting very old! From what I understand, Prolia and Xgeava are both the same kind of drugs. So if you have the smallest jaw pain starting, I would ditch the prolia.
Did your scan look like mine, as far as being lit up in the joints?
Because all of the joint and Leg BONE pain I have now, Getting up from a seated position is becoming harder by the day. I take Morphine Sulfate twice a day, But anymore it's not helping a real lot. Onco said I have to go to a pain Specialist Now. Oh Great, another Dr. ! And I won't even get into my feet that I have neuropathy in so bad, it feels like my feet are on fire ALL the time. And I mean FIRE. they ache so bad, I spend 30 minutes after I get off of them just rubbing them to make them feel a tad bit better.
Hoping your rib improves and you don't get the MNOJ from the prolia!!!
Yes my joints are lit up on the nuclear scan showing degeneration .So I lite up BobMarley style often myself. I too
have a little twinge in my jaw at times. That jaw shit is scary. The dentist attempted a post but the bone failed and now for the first time since I was 4 yrs old I’ve got a missing molar . The prolia states” increased joint and muscle pain possible. Holey cow! They’re not lying about that one. 1/2 of this I got from dad pc and the djd from moma. “ It’s getting old” I felt young before dx but now working on seven years I’m officially the ol man at 60. I’m sorry that you’re in such brutal pain. My ct and other joints in my shoulders are lit up . Painfully my arms go numb at night. My hands and feet are always numb. It seems to come out at bed time. I think if I had a weekly massage I’d improve but can’t afford anything. Wife won’t touch me . I don’t blame her .I m skin hanging on bone. We are still here . We will suffer til we can’t take no more . What a gig? Jan 25 we had 3 ft of snow. We shoveled for days our six hundred foot steep driveway . Ever since my thumbs do not work. At night the left big knuckle of my thumb turns into a burning fire. How can one specific joint scream such pain? K failure was my worse felt pain yet . My 90 mom told me” you’re paying for your sins now”! A staunch Irish catholic .. Thanks mom ! You’re pain is much more than mine. Anytime I feel sorry for myself all I have to do is read these pages and see those ten times worse . It’s humbling to say the least. I wish you well and an escape for pain for us both. Take care brother .
My MO didn’t show me my scans . I got the nurse to get me a copy . All of my joints were lit up . Not important enough to concern my new pc specialist .
Bone scans detect concentrated bode growth/repair as "hot spots" of dense black where more radioactive tracer is taken up.
Lyric areas (areas of no bone growth) can be seen but they must be big enough/cover a large enough area to be seen & even then are less obvious vs the "hot spots".
A CT scan is often more sensitive for smaller lytic areas (areas of little/no bone).
A negative bone scan area can be positive on CT.
A bone scan is a Nuclear Medicine Study and a CT scan is a type of highly accurate x-ray study. These are performed separately usually within different sub-departments of the Radiology/Imaging Department.
While more advanced centers might fuse these these 2 studies these are often separate studies and the "fusion" is often an "as close as possible" approximation of the anatomy of these 2 separate studies. These can be 2 SEPARATE studies taken some time apart and the fusion is a close approximation ..... more advanced centers are likely to get this better vs less advanced centers due to equipment differences. More advanced centers are more likely to fuse a bone scan with a CT scan and less advanced centers are less likely to fuse these 2 studies ..... it is COMMON to get a stand-alone bone scan which may or may not have a CT scan to compare it to.
Often bone scans are done on their own and are NOT fused to a CT scan and a comparison can be made to a previous or subsequent CT scan if one is available.
The Bone Scan measures "active bone areas" where bone formation is high. Your joint pain & necrosis may not yet be extensive enough to affect bone formation or might be too small to register/be seen on the bone scan.
Well Rscis, I'm very happy you have cleared this up for me. I guess I can feel more comfortable with this information coming straight from the horses mouth. Thank you!😉
I know they do, That's why I cant understand No mention of it was said in the report. To me, I feel like , it's like getting your bloodwork done for your PSA, and your PSA is ok, But, your white blood cells are extremely low, and your doctor says nothing about to you.
I feel that m MO pc specialist doesn’t care much about the djd .. he said nothing except “ we see you’ve got a fractured rib”! Hmmm ,nothing about the joints . Prolia obviously doesn’t help the joints . My bone density improved 10% my last dexa scan . My joints are shot .. 🧐
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I would think the joint issue is more tendon and cartilage related then bone...do you take anything to help maintain cartilage? Tendons I don't believe there is anything yet.
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You are correct. What is taken for the cartilage? Tom , we see that treatments and no t cut onto our every fiber . It’s not just labido , muscle and bones it’s the connective tissues and every thing affected by hypogonadism . Be well ✌️
Well, thats the only thing I/WE can do, RIGHT, and I am!Well, My big news is, yesterday I went back to Cornell/NYC to see Dr. Tagawa, got a crap ton of bloodwork done and I got the PSMA CT/Pet scan completed for the trial I will be doing. I am totally impressed with that place, and the people working there. I had the results of my bloodwork in less than 30 minutes, AND the results of the PSMA scan in less than an hour! Before I left to go home!
Mod med miracles compared to even ten years ago .. like someones doctor here said” You have picked the best time in history to get APC. So many drugs. But seriously , Best of luck on the trial. I’ve been on one six years now. Take care
This is a very timely topic for me. Unfortunately, I don't have time to read it carefully right now. My partially developed thoughts are based upon recent experience. I have been getting full body bones scans every 8 weeks since December. So there is a baseline and then they keep comparing the next one to see progress or regression for tumors. The CT scans see a little more, plus soft tissue issues. In my case, "stable" bone scans did not give enough details to explain increasing pain. So we had to do an MRI to find out the details.
Most of the older oncologists do not seem to be anxious to embrace the newer PET/CT scans. I don't know whether it is the cost or their comfort, but I will be pushing harder to have them increase the use of what I understand to be more detailed diagnostic tools. A faster reaction to treatment protocols whether positive or negative seems like a logical and important step.
My anecdotal evidence is the nuclear whole body bones scan with CT is not good enough and there are better tools to use.
The last conversation i had with an oncologist on the subject of Pylarify is that it will be widely used by the end of the year. Then he said it would do us much good because we don't have a baseline for it. The bones scan we have a history with. I will revisit the subject with him, because it doesn't seem like a logical progression.
I think the best tool available that could give us the most useful information. I will try to learn what the specific differences are, so I don't have to rely on "gut" feelings in the discussions.
I am leaving soon to get a bone and tissue biopsy sponsored by AMG509. I have a growing nodule on the adrenal gland above my right kidney which is suspicious for metastasis. I hope there is a clue to the specific nature of the mutation this time. The last sentence just told me i have no hope it is benign growth unrelated to cancer. Wow, that is a difference in emotional outlook from the last few years.
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My 18 month follow up scans...........except for the jaw infection and subsequent redo of a failed root canal, which is painful, not bad.
understanding Ct scans with bone scan reports . 
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