› Forums › General Melanoma Community › PET Scan
- This topic has 24 replies, 6 voices, and was last updated 10 years ago by
jazzygal.
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- March 31, 2014 at 7:31 pm
My husband was recently diagnosed with an amelanotic T1b melanoma on his face. He is having it excised as well as a SLNB this week. Our doctor is hesitant to perform any scans. From what I've read, melanoma is unpredictable. We have young children and I want to error on the side of caution. Should I push for a scan of some sort? Is it typical for a T1b patient to get a scan or chest x-ray? Any advice would be greatly appreciated. Thank you.
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- March 31, 2014 at 7:44 pm
Scans are rarely done for stage IB patients unless they have symptoms. A chest x-ray is more realistic, but even then has limited value. It only helps if someone jumps to stage IV and most early stagers go to stage III first. For your husband, that would likely mean disease in the lymph nodes in his neck. Just so you know, microscopic disease does NOT show up on scans, you have to wait until the tumor is large enough to actually show up on a CT or PET. What I'd do at this point is wait for the results of the SNB. If it is positive, then they will be more likely to offer scans as he would then be stage III. If it is negative (fingers crossed), then he is in the realm of other stage I/II patients where scans are rarely done.
Best wishes,
Janner
Stage IB since 1992, 3 MM primaries
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- March 31, 2014 at 7:44 pm
Scans are rarely done for stage IB patients unless they have symptoms. A chest x-ray is more realistic, but even then has limited value. It only helps if someone jumps to stage IV and most early stagers go to stage III first. For your husband, that would likely mean disease in the lymph nodes in his neck. Just so you know, microscopic disease does NOT show up on scans, you have to wait until the tumor is large enough to actually show up on a CT or PET. What I'd do at this point is wait for the results of the SNB. If it is positive, then they will be more likely to offer scans as he would then be stage III. If it is negative (fingers crossed), then he is in the realm of other stage I/II patients where scans are rarely done.
Best wishes,
Janner
Stage IB since 1992, 3 MM primaries
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- April 1, 2014 at 2:34 am
It's never been a "universal" standard, just like there is no universal standard for scans at any stage. I've had baseline chest x-ray and bloodwork done once in 22 years. It all depends on the institution. I don't see much point in either, though, because those two tests really look for stage I to jump to stage IV, and most who progress go to stage III (lymph node involvement) first. A chest x-ray or bloodwork would not indicate anything in a stage III scenario. But hey, if it makes one feel better, go for it. If I were to push for anything, I'd want ultrasound monitoring of the nearest lymph node basin. To me, that makes more sense to monitor for stage III spread. Just my personal opinion, though, and probably a tough sell to doctors and insurance as well.
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- April 1, 2014 at 2:34 am
It's never been a "universal" standard, just like there is no universal standard for scans at any stage. I've had baseline chest x-ray and bloodwork done once in 22 years. It all depends on the institution. I don't see much point in either, though, because those two tests really look for stage I to jump to stage IV, and most who progress go to stage III (lymph node involvement) first. A chest x-ray or bloodwork would not indicate anything in a stage III scenario. But hey, if it makes one feel better, go for it. If I were to push for anything, I'd want ultrasound monitoring of the nearest lymph node basin. To me, that makes more sense to monitor for stage III spread. Just my personal opinion, though, and probably a tough sell to doctors and insurance as well.
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- April 1, 2014 at 2:34 am
It's never been a "universal" standard, just like there is no universal standard for scans at any stage. I've had baseline chest x-ray and bloodwork done once in 22 years. It all depends on the institution. I don't see much point in either, though, because those two tests really look for stage I to jump to stage IV, and most who progress go to stage III (lymph node involvement) first. A chest x-ray or bloodwork would not indicate anything in a stage III scenario. But hey, if it makes one feel better, go for it. If I were to push for anything, I'd want ultrasound monitoring of the nearest lymph node basin. To me, that makes more sense to monitor for stage III spread. Just my personal opinion, though, and probably a tough sell to doctors and insurance as well.
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- March 31, 2014 at 7:44 pm
Scans are rarely done for stage IB patients unless they have symptoms. A chest x-ray is more realistic, but even then has limited value. It only helps if someone jumps to stage IV and most early stagers go to stage III first. For your husband, that would likely mean disease in the lymph nodes in his neck. Just so you know, microscopic disease does NOT show up on scans, you have to wait until the tumor is large enough to actually show up on a CT or PET. What I'd do at this point is wait for the results of the SNB. If it is positive, then they will be more likely to offer scans as he would then be stage III. If it is negative (fingers crossed), then he is in the realm of other stage I/II patients where scans are rarely done.
Best wishes,
Janner
Stage IB since 1992, 3 MM primaries
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- April 5, 2014 at 7:15 am
I was diagnosed with an amelanotic melanoma on my forearm on Monday. I had blood tests, and chest x-rays done on Tuesday which were pretty much nomal with the excecption of my lympohcytes being slightly less than nomal and my eosinophis being slightly greater than normal. They also ordered a PET scan which was done today and I haven't seen the results of.
I will be seeing a melanoma specialist and surgeon in two weeks to have the remainder of the area around the primary melanoma on my forearm removed, the SLNB performed, and to see what else needs to be done and where I go from here. I feel perfectly fine. I was told that x-rays, blood work, and a PET/CT scan is imperativel to see if the melanona has metastasized and where to, so they can get rid of it, and do whatever is necessary to stop it from spreading as soon as possible. Unlike blood work and x-rays, a PET scan is a complete body scan that tends to show everywhere that a tumor or cancer cells may be if it is done, and analyzed, correctly.
If I were you I would push for a PET scan, x-rays, blood work, and anything else that could show if your husband's melatoma has spread and metastasized so that they can do all they can to get rid of it everywhere that it could possibly be and stop it form moving on and causing any further problems. The sooner it is completely eliminated from his body the better and the more likely that he will survive for a very long time. The scans are not painful or detrmrimental so I can see absolutely no reason not to have them done since they may show something that otherwise may not show up. I would also recommend that he see a melanoma speicalist instead of just a dermatologist or oncologist because melanoma speicalists tend to know far more about melanomas than any other specialist and they stay on top of the most recent results and treatments.
I am thankful that when my dermatologist who thought all I had was a basal cell carcinoma found out from the lab results that I have a melanoma he ordered all kinds of tests and referred me to one of the top melanoma specialists in our area to make sure that all will be done to save my life.
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- April 5, 2014 at 7:15 am
I was diagnosed with an amelanotic melanoma on my forearm on Monday. I had blood tests, and chest x-rays done on Tuesday which were pretty much nomal with the excecption of my lympohcytes being slightly less than nomal and my eosinophis being slightly greater than normal. They also ordered a PET scan which was done today and I haven't seen the results of.
I will be seeing a melanoma specialist and surgeon in two weeks to have the remainder of the area around the primary melanoma on my forearm removed, the SLNB performed, and to see what else needs to be done and where I go from here. I feel perfectly fine. I was told that x-rays, blood work, and a PET/CT scan is imperativel to see if the melanona has metastasized and where to, so they can get rid of it, and do whatever is necessary to stop it from spreading as soon as possible. Unlike blood work and x-rays, a PET scan is a complete body scan that tends to show everywhere that a tumor or cancer cells may be if it is done, and analyzed, correctly.
If I were you I would push for a PET scan, x-rays, blood work, and anything else that could show if your husband's melatoma has spread and metastasized so that they can do all they can to get rid of it everywhere that it could possibly be and stop it form moving on and causing any further problems. The sooner it is completely eliminated from his body the better and the more likely that he will survive for a very long time. The scans are not painful or detrmrimental so I can see absolutely no reason not to have them done since they may show something that otherwise may not show up. I would also recommend that he see a melanoma speicalist instead of just a dermatologist or oncologist because melanoma speicalists tend to know far more about melanomas than any other specialist and they stay on top of the most recent results and treatments.
I am thankful that when my dermatologist who thought all I had was a basal cell carcinoma found out from the lab results that I have a melanoma he ordered all kinds of tests and referred me to one of the top melanoma specialists in our area to make sure that all will be done to save my life.
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- April 5, 2014 at 7:15 am
I was diagnosed with an amelanotic melanoma on my forearm on Monday. I had blood tests, and chest x-rays done on Tuesday which were pretty much nomal with the excecption of my lympohcytes being slightly less than nomal and my eosinophis being slightly greater than normal. They also ordered a PET scan which was done today and I haven't seen the results of.
I will be seeing a melanoma specialist and surgeon in two weeks to have the remainder of the area around the primary melanoma on my forearm removed, the SLNB performed, and to see what else needs to be done and where I go from here. I feel perfectly fine. I was told that x-rays, blood work, and a PET/CT scan is imperativel to see if the melanona has metastasized and where to, so they can get rid of it, and do whatever is necessary to stop it from spreading as soon as possible. Unlike blood work and x-rays, a PET scan is a complete body scan that tends to show everywhere that a tumor or cancer cells may be if it is done, and analyzed, correctly.
If I were you I would push for a PET scan, x-rays, blood work, and anything else that could show if your husband's melatoma has spread and metastasized so that they can do all they can to get rid of it everywhere that it could possibly be and stop it form moving on and causing any further problems. The sooner it is completely eliminated from his body the better and the more likely that he will survive for a very long time. The scans are not painful or detrmrimental so I can see absolutely no reason not to have them done since they may show something that otherwise may not show up. I would also recommend that he see a melanoma speicalist instead of just a dermatologist or oncologist because melanoma speicalists tend to know far more about melanomas than any other specialist and they stay on top of the most recent results and treatments.
I am thankful that when my dermatologist who thought all I had was a basal cell carcinoma found out from the lab results that I have a melanoma he ordered all kinds of tests and referred me to one of the top melanoma specialists in our area to make sure that all will be done to save my life.
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- April 8, 2014 at 2:08 pm
Hello
I was diagnosed with two stage 1 mel in Feb ( neck and toe ) and simply asked my oncologist about a PET scan. It seemed to bring him into focus and he agreed that my age ( 39 ) and the prescence of two mel at the same time in the neck and toe warranted a PET scan. I dont think he would have done it had I not asked the question.
Ive since had the PET and it lit up intensely in my neck and thyriod and chest area so I ve had more biopsies. Chances are its nothing but I will be grateful to know that is the case .
I agree to push. Fate led me to being diagnosed and now I feel if an idea ' pops up in my head ' i need to follow it through. Trust your gut – whats the worst that can happen – being told its clear ? T
Thats a blessing that is great to hear
x
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- April 8, 2014 at 2:08 pm
Hello
I was diagnosed with two stage 1 mel in Feb ( neck and toe ) and simply asked my oncologist about a PET scan. It seemed to bring him into focus and he agreed that my age ( 39 ) and the prescence of two mel at the same time in the neck and toe warranted a PET scan. I dont think he would have done it had I not asked the question.
Ive since had the PET and it lit up intensely in my neck and thyriod and chest area so I ve had more biopsies. Chances are its nothing but I will be grateful to know that is the case .
I agree to push. Fate led me to being diagnosed and now I feel if an idea ' pops up in my head ' i need to follow it through. Trust your gut – whats the worst that can happen – being told its clear ? T
Thats a blessing that is great to hear
x
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- April 18, 2014 at 12:45 am
I got my PET scan results. Other than the obvious melanoma on my forearm, the scan showed nothing else except for increased FDG in my thyroid lobes and stomach, and in particular the gastric cardia part of my stomach. They feel that the melanoma has not metastasized to those areas because I have had hypothyroid problems for years so it is likely that inflammation from that is what caused the increased FDGs, and that my stomach was also inflamed because of the barium I had to drink before the scan and that is why it also showed increased FDGs
None the less, my great doctors don't just cling to their beliefs and let things go. So they have ordered that I have another thyroid test (I had one previously in February) and I am having an Upper GI endoscopy performed tomorrow to look around in my stomach to see if anything looks unusual and if it does biopsys will be taken.
I will be meeting with the melanoma specialist and surgeon on Monday so we will see where things go from there. I believe that everything is going to be fine and this thing will be over and done with after that meeting.
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- April 18, 2014 at 12:45 am
I got my PET scan results. Other than the obvious melanoma on my forearm, the scan showed nothing else except for increased FDG in my thyroid lobes and stomach, and in particular the gastric cardia part of my stomach. They feel that the melanoma has not metastasized to those areas because I have had hypothyroid problems for years so it is likely that inflammation from that is what caused the increased FDGs, and that my stomach was also inflamed because of the barium I had to drink before the scan and that is why it also showed increased FDGs
None the less, my great doctors don't just cling to their beliefs and let things go. So they have ordered that I have another thyroid test (I had one previously in February) and I am having an Upper GI endoscopy performed tomorrow to look around in my stomach to see if anything looks unusual and if it does biopsys will be taken.
I will be meeting with the melanoma specialist and surgeon on Monday so we will see where things go from there. I believe that everything is going to be fine and this thing will be over and done with after that meeting.
-
- April 18, 2014 at 12:45 am
I got my PET scan results. Other than the obvious melanoma on my forearm, the scan showed nothing else except for increased FDG in my thyroid lobes and stomach, and in particular the gastric cardia part of my stomach. They feel that the melanoma has not metastasized to those areas because I have had hypothyroid problems for years so it is likely that inflammation from that is what caused the increased FDGs, and that my stomach was also inflamed because of the barium I had to drink before the scan and that is why it also showed increased FDGs
None the less, my great doctors don't just cling to their beliefs and let things go. So they have ordered that I have another thyroid test (I had one previously in February) and I am having an Upper GI endoscopy performed tomorrow to look around in my stomach to see if anything looks unusual and if it does biopsys will be taken.
I will be meeting with the melanoma specialist and surgeon on Monday so we will see where things go from there. I believe that everything is going to be fine and this thing will be over and done with after that meeting.
-
- April 8, 2014 at 2:08 pm
Hello
I was diagnosed with two stage 1 mel in Feb ( neck and toe ) and simply asked my oncologist about a PET scan. It seemed to bring him into focus and he agreed that my age ( 39 ) and the prescence of two mel at the same time in the neck and toe warranted a PET scan. I dont think he would have done it had I not asked the question.
Ive since had the PET and it lit up intensely in my neck and thyriod and chest area so I ve had more biopsies. Chances are its nothing but I will be grateful to know that is the case .
I agree to push. Fate led me to being diagnosed and now I feel if an idea ' pops up in my head ' i need to follow it through. Trust your gut – whats the worst that can happen – being told its clear ? T
Thats a blessing that is great to hear
x
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