› Forums › General Melanoma Community › Scare at Mayo
- This topic has 36 replies, 8 voices, and was last updated 7 years, 3 months ago by
Bubbles.
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- January 5, 2017 at 1:55 am
Had my PET yesterday (3b from 2013). I normally see Dr Mcwilliams but Dr Markovic came in to discuss results. I have heard he is the man at Mayo when it comes to melanoma. I had never seen him before and was afraid he was coming to give me bad news. The PET showed bright red near my appendix/intestines. I was thinking that I was going supernova. Markovic ordered a MRI but it was 530pm so they were shutting down. Definitely a restless sleep last night. Got in to do the MRI at 630am today and after an hour they cut me loose to head home. Got the call from Markovic at 5pm that it was not melanoma and after discussing it with the radiologist team and Mel team the attending radiologist reeled his initial call back in after they went over both the PET and MRI together. I'm relieved to say the least. He said there is a nodule on my lung but it is nothing.
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- January 5, 2017 at 3:54 am
It is good that you are in no imminent peril due to melanoma.
I am curious though.
Why, given that you are three out and going on four years at 3B would you be given a PET as a matter of routine followup?
I am also curious about your PET showing "bright red" near your appendix/intestines and why that would trigger a followup MRI.
Positronic Emission Tomography (PET) scans are not measured or evaluated by color, they are measured and evaluated by Serum Uptake Values .
That is to say that those values are obtained by measuring the rate at which certain radioactive tracers (injected in you prior to the scan) are absorbed by your body.
The PET results are a numerical value; not a color value.
I AM NOT DOUBTING WHAT YOU ARE SAYING.
I have never heard of anyone three years out from a dx of 3b having a PET as routine followup.
I have never heard of a doctor ordering a MRI due to the "color" of a PET scan.
……………………….and, at the end of the day, after scaring the crap out of you with a "red appendix/intestines" PET, you are told that following your MRI, you have a nodule on your lung that is nothing?
It does not require am extensive knowledge of anatomy to know the difference (and location) of the appendix, intestine and lungs.
You were told there was a posible problem with your appendix and/or intestine and end up with a dx of a not to worry lung nodule?
Think about it.
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- January 5, 2017 at 4:29 am
I do what the melanoma docs at mayo tell me to do, I trust them more than my limited knowledge of Mel. They could be wrong. I'm comfortable with them and posted this so people in similar situations may say-oh yeah I remember a guy that went to mayo had the same thing and it was not a big deal that's all. It's been my high school educated experience that I learn better when I see pictures so maybe the docs have a computer program that turns uptake values into colors to better illustrate uptake, not sure. It's possible but highly unlikely the mayo docs are running a scam and laughing about it after showing me the images. Also have been to told lung nodules are fairly common on pets and most of the time are nothing, similar to spots on the liver. You are right, I've had a lot of PETS, maybe in your country they do it differently, but my experience at mayo has been PETS every 6 months since diagnosis.
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- January 5, 2017 at 4:29 am
I do what the melanoma docs at mayo tell me to do, I trust them more than my limited knowledge of Mel. They could be wrong. I'm comfortable with them and posted this so people in similar situations may say-oh yeah I remember a guy that went to mayo had the same thing and it was not a big deal that's all. It's been my high school educated experience that I learn better when I see pictures so maybe the docs have a computer program that turns uptake values into colors to better illustrate uptake, not sure. It's possible but highly unlikely the mayo docs are running a scam and laughing about it after showing me the images. Also have been to told lung nodules are fairly common on pets and most of the time are nothing, similar to spots on the liver. You are right, I've had a lot of PETS, maybe in your country they do it differently, but my experience at mayo has been PETS every 6 months since diagnosis.
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- January 5, 2017 at 4:29 am
I do what the melanoma docs at mayo tell me to do, I trust them more than my limited knowledge of Mel. They could be wrong. I'm comfortable with them and posted this so people in similar situations may say-oh yeah I remember a guy that went to mayo had the same thing and it was not a big deal that's all. It's been my high school educated experience that I learn better when I see pictures so maybe the docs have a computer program that turns uptake values into colors to better illustrate uptake, not sure. It's possible but highly unlikely the mayo docs are running a scam and laughing about it after showing me the images. Also have been to told lung nodules are fairly common on pets and most of the time are nothing, similar to spots on the liver. You are right, I've had a lot of PETS, maybe in your country they do it differently, but my experience at mayo has been PETS every 6 months since diagnosis.
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- January 5, 2017 at 2:49 pm
This is for Anon, just a couple of links for your general knowledge of Pet Scans. https://www.google.ca/webhp?rlz=1C1CHBF_enCA722CA722&ie=UTF-8&rct=j#q=pet+ct+scan+images Second link, please read third paragraph(How does a pet scan work0 where they talk about adding colour!!!https://www.oncolink.org/cancer-treatment/procedures-diagnostic-tests/nuclear-medicine-tests/introduction-to-pet-ct-imaging Just wanted to add I am not a medical professional and I also consider myself to be very skeptical of some poster on the forum but Toby0987 has been around for awhile and he doesn't go by "Anon" which makes him a solid forum citizen!!! Sorry I if am coming across negative Anon but if you are going to call some one out around here have the character to back it up with a name!!!Ed
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- January 5, 2017 at 2:49 pm
This is for Anon, just a couple of links for your general knowledge of Pet Scans. https://www.google.ca/webhp?rlz=1C1CHBF_enCA722CA722&ie=UTF-8&rct=j#q=pet+ct+scan+images Second link, please read third paragraph(How does a pet scan work0 where they talk about adding colour!!!https://www.oncolink.org/cancer-treatment/procedures-diagnostic-tests/nuclear-medicine-tests/introduction-to-pet-ct-imaging Just wanted to add I am not a medical professional and I also consider myself to be very skeptical of some poster on the forum but Toby0987 has been around for awhile and he doesn't go by "Anon" which makes him a solid forum citizen!!! Sorry I if am coming across negative Anon but if you are going to call some one out around here have the character to back it up with a name!!!Ed
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- January 5, 2017 at 2:49 pm
This is for Anon, just a couple of links for your general knowledge of Pet Scans. https://www.google.ca/webhp?rlz=1C1CHBF_enCA722CA722&ie=UTF-8&rct=j#q=pet+ct+scan+images Second link, please read third paragraph(How does a pet scan work0 where they talk about adding colour!!!https://www.oncolink.org/cancer-treatment/procedures-diagnostic-tests/nuclear-medicine-tests/introduction-to-pet-ct-imaging Just wanted to add I am not a medical professional and I also consider myself to be very skeptical of some poster on the forum but Toby0987 has been around for awhile and he doesn't go by "Anon" which makes him a solid forum citizen!!! Sorry I if am coming across negative Anon but if you are going to call some one out around here have the character to back it up with a name!!!Ed
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- January 5, 2017 at 3:54 am
It is good that you are in no imminent peril due to melanoma.
I am curious though.
Why, given that you are three out and going on four years at 3B would you be given a PET as a matter of routine followup?
I am also curious about your PET showing "bright red" near your appendix/intestines and why that would trigger a followup MRI.
Positronic Emission Tomography (PET) scans are not measured or evaluated by color, they are measured and evaluated by Serum Uptake Values .
That is to say that those values are obtained by measuring the rate at which certain radioactive tracers (injected in you prior to the scan) are absorbed by your body.
The PET results are a numerical value; not a color value.
I AM NOT DOUBTING WHAT YOU ARE SAYING.
I have never heard of anyone three years out from a dx of 3b having a PET as routine followup.
I have never heard of a doctor ordering a MRI due to the "color" of a PET scan.
……………………….and, at the end of the day, after scaring the crap out of you with a "red appendix/intestines" PET, you are told that following your MRI, you have a nodule on your lung that is nothing?
It does not require am extensive knowledge of anatomy to know the difference (and location) of the appendix, intestine and lungs.
You were told there was a posible problem with your appendix and/or intestine and end up with a dx of a not to worry lung nodule?
Think about it.
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- January 5, 2017 at 3:54 am
It is good that you are in no imminent peril due to melanoma.
I am curious though.
Why, given that you are three out and going on four years at 3B would you be given a PET as a matter of routine followup?
I am also curious about your PET showing "bright red" near your appendix/intestines and why that would trigger a followup MRI.
Positronic Emission Tomography (PET) scans are not measured or evaluated by color, they are measured and evaluated by Serum Uptake Values .
That is to say that those values are obtained by measuring the rate at which certain radioactive tracers (injected in you prior to the scan) are absorbed by your body.
The PET results are a numerical value; not a color value.
I AM NOT DOUBTING WHAT YOU ARE SAYING.
I have never heard of anyone three years out from a dx of 3b having a PET as routine followup.
I have never heard of a doctor ordering a MRI due to the "color" of a PET scan.
……………………….and, at the end of the day, after scaring the crap out of you with a "red appendix/intestines" PET, you are told that following your MRI, you have a nodule on your lung that is nothing?
It does not require am extensive knowledge of anatomy to know the difference (and location) of the appendix, intestine and lungs.
You were told there was a posible problem with your appendix and/or intestine and end up with a dx of a not to worry lung nodule?
Think about it.
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- January 5, 2017 at 12:22 pm
MDA definitely do scans every 3 months for a couple of years at stage 3, then probably move to 6 mo the for a few more years, don't know as unfortunately after 18 months my husband progressed to stage 4. So every 6 months baths at stage 3 sounds right to me.
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- January 5, 2017 at 12:22 pm
MDA definitely do scans every 3 months for a couple of years at stage 3, then probably move to 6 mo the for a few more years, don't know as unfortunately after 18 months my husband progressed to stage 4. So every 6 months baths at stage 3 sounds right to me.
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- January 5, 2017 at 12:22 pm
MDA definitely do scans every 3 months for a couple of years at stage 3, then probably move to 6 mo the for a few more years, don't know as unfortunately after 18 months my husband progressed to stage 4. So every 6 months baths at stage 3 sounds right to me.
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- January 5, 2017 at 2:00 pm
HI there! I don't usually post too much but I am stage 4 and I also get seen at Mayo. I was just there yesterday to have a port put in 🙂 I am curious to see what you experience with Dr. McWilliams has been like. He was my original oncologist but now I see Dr.Block. I chose to switch oncologists because back when I developed aseptic menegitis from ipi/nivo, Dr. McWilliams pretty much blew me off and did not test whatsoever to find out the cause. It was a huge letdown for me when I ended up being hospitalized for 9 days because he thought the symptoms were no big deal. Don't get me wrong…he's very nice but the experience I had with him as my oncologist was not good. I would really be interested in knowing more about Dr. Markovick…I've heard good things but have not met him personally. Do you like going to the Mayo Clinic for your care? I don't run into many people who go to Mayo for their melanoma so it's nice to know I'm not alone.
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- January 5, 2017 at 2:00 pm
HI there! I don't usually post too much but I am stage 4 and I also get seen at Mayo. I was just there yesterday to have a port put in 🙂 I am curious to see what you experience with Dr. McWilliams has been like. He was my original oncologist but now I see Dr.Block. I chose to switch oncologists because back when I developed aseptic menegitis from ipi/nivo, Dr. McWilliams pretty much blew me off and did not test whatsoever to find out the cause. It was a huge letdown for me when I ended up being hospitalized for 9 days because he thought the symptoms were no big deal. Don't get me wrong…he's very nice but the experience I had with him as my oncologist was not good. I would really be interested in knowing more about Dr. Markovick…I've heard good things but have not met him personally. Do you like going to the Mayo Clinic for your care? I don't run into many people who go to Mayo for their melanoma so it's nice to know I'm not alone.
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- January 5, 2017 at 2:00 pm
HI there! I don't usually post too much but I am stage 4 and I also get seen at Mayo. I was just there yesterday to have a port put in 🙂 I am curious to see what you experience with Dr. McWilliams has been like. He was my original oncologist but now I see Dr.Block. I chose to switch oncologists because back when I developed aseptic menegitis from ipi/nivo, Dr. McWilliams pretty much blew me off and did not test whatsoever to find out the cause. It was a huge letdown for me when I ended up being hospitalized for 9 days because he thought the symptoms were no big deal. Don't get me wrong…he's very nice but the experience I had with him as my oncologist was not good. I would really be interested in knowing more about Dr. Markovick…I've heard good things but have not met him personally. Do you like going to the Mayo Clinic for your care? I don't run into many people who go to Mayo for their melanoma so it's nice to know I'm not alone.
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- January 5, 2017 at 3:13 pm
This is the first time meeting Dr Markovic. He seemed good and according to some board members and my local onc that Dr Markovic is the man. He has a ton of stuff published on melanoma so that's a good thing. Dr Mcwilliams has always been responsive to my questions. It is a little awkward sitting down with him because he is not a big talker-kind of like a bad date. Since I have not progressed any further, Dr Mcwilliams hasn't had to do much. When I first got "the news" I wasn't too impressed with dr Mcwilliams hand holding on the trials out there-basically just handed me a stack of papers and moved on. He did sit in the room and talk to me for over an hour and field newby questions-I've never felt rushed there. There were 3 melanoma people there when I was there the day before yesterday-they glad handing Dr Markovic about his care. I was in the PET melanoma marinating room and I heard another Mel patient from Michigan was in the next room talking about her struggle to the finger sticker and I felt bad for her-she had taken a sip of apple juice in the morning and it threw off her blood sugar so they had to postpone her PET-good to see other people going to Mayo-good luck
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- January 5, 2017 at 3:13 pm
This is the first time meeting Dr Markovic. He seemed good and according to some board members and my local onc that Dr Markovic is the man. He has a ton of stuff published on melanoma so that's a good thing. Dr Mcwilliams has always been responsive to my questions. It is a little awkward sitting down with him because he is not a big talker-kind of like a bad date. Since I have not progressed any further, Dr Mcwilliams hasn't had to do much. When I first got "the news" I wasn't too impressed with dr Mcwilliams hand holding on the trials out there-basically just handed me a stack of papers and moved on. He did sit in the room and talk to me for over an hour and field newby questions-I've never felt rushed there. There were 3 melanoma people there when I was there the day before yesterday-they glad handing Dr Markovic about his care. I was in the PET melanoma marinating room and I heard another Mel patient from Michigan was in the next room talking about her struggle to the finger sticker and I felt bad for her-she had taken a sip of apple juice in the morning and it threw off her blood sugar so they had to postpone her PET-good to see other people going to Mayo-good luck
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- January 5, 2017 at 3:13 pm
This is the first time meeting Dr Markovic. He seemed good and according to some board members and my local onc that Dr Markovic is the man. He has a ton of stuff published on melanoma so that's a good thing. Dr Mcwilliams has always been responsive to my questions. It is a little awkward sitting down with him because he is not a big talker-kind of like a bad date. Since I have not progressed any further, Dr Mcwilliams hasn't had to do much. When I first got "the news" I wasn't too impressed with dr Mcwilliams hand holding on the trials out there-basically just handed me a stack of papers and moved on. He did sit in the room and talk to me for over an hour and field newby questions-I've never felt rushed there. There were 3 melanoma people there when I was there the day before yesterday-they glad handing Dr Markovic about his care. I was in the PET melanoma marinating room and I heard another Mel patient from Michigan was in the next room talking about her struggle to the finger sticker and I felt bad for her-she had taken a sip of apple juice in the morning and it threw off her blood sugar so they had to postpone her PET-good to see other people going to Mayo-good luck
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- January 5, 2017 at 3:39 pm
I could never explain the awkwardness that my husband and I felt when I met with Dr. McWilliams but you put it into words perfectly…felt like a bad date lol I'm a very shy girl but if you ever see a young,blond-haired, blue eyed and covered with freckles girl….that's me! Would love to meet someone who goes there too. Glad everything is going well for you and maybe I'll see you around. Thanks so much for your reply.
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- January 5, 2017 at 3:39 pm
I could never explain the awkwardness that my husband and I felt when I met with Dr. McWilliams but you put it into words perfectly…felt like a bad date lol I'm a very shy girl but if you ever see a young,blond-haired, blue eyed and covered with freckles girl….that's me! Would love to meet someone who goes there too. Glad everything is going well for you and maybe I'll see you around. Thanks so much for your reply.
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- January 5, 2017 at 3:39 pm
I could never explain the awkwardness that my husband and I felt when I met with Dr. McWilliams but you put it into words perfectly…felt like a bad date lol I'm a very shy girl but if you ever see a young,blond-haired, blue eyed and covered with freckles girl….that's me! Would love to meet someone who goes there too. Glad everything is going well for you and maybe I'll see you around. Thanks so much for your reply.
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- January 5, 2017 at 7:17 pm
Hi Toby, I am also a Mayo Patient (stage 4) and have been going since 2012. Currently receiving pembro since June and I have had Pet scans every 3 months since 2013. Have had almost all of the Melanoma specialists here when I come for treatment every 3 wks. but Dr Markovic overseas my care now. Just had treatment on Jan.3 but didn't have Markovic. Mayo is known as one of the top Melanoma research hospitals in the WORLD for those of you not familiar with them Currently trying to kill a large sternum tumor since 2014 and my September scans showed a 60% reduction in size and my December scan showed another reduction of 50% since Sept. so looks like were going in the right direction.Side affects of Pembro have been pretty much fatigue only. My previous posts have been mostly titled sternum and sternum reoccurrence. Nice to see here of some Mayo patients here. Good luck to all and a Blessed New Year to everyone. Beans
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- January 5, 2017 at 7:17 pm
Hi Toby, I am also a Mayo Patient (stage 4) and have been going since 2012. Currently receiving pembro since June and I have had Pet scans every 3 months since 2013. Have had almost all of the Melanoma specialists here when I come for treatment every 3 wks. but Dr Markovic overseas my care now. Just had treatment on Jan.3 but didn't have Markovic. Mayo is known as one of the top Melanoma research hospitals in the WORLD for those of you not familiar with them Currently trying to kill a large sternum tumor since 2014 and my September scans showed a 60% reduction in size and my December scan showed another reduction of 50% since Sept. so looks like were going in the right direction.Side affects of Pembro have been pretty much fatigue only. My previous posts have been mostly titled sternum and sternum reoccurrence. Nice to see here of some Mayo patients here. Good luck to all and a Blessed New Year to everyone. Beans
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- January 6, 2017 at 2:18 am
I am curious to know by what standard of measure is the Mayo clinic regarded as one of the top Melanoma Research Hospitals in the World.
If that were true, the majority of people here would be going there.
A final word about the PET thing. My guess is that you folks are getting PET/CT Overlay scans, NOT a PET alone.
Information is Power.
Careful where you get it and careful how you use it.
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- January 6, 2017 at 2:18 am
I am curious to know by what standard of measure is the Mayo clinic regarded as one of the top Melanoma Research Hospitals in the World.
If that were true, the majority of people here would be going there.
A final word about the PET thing. My guess is that you folks are getting PET/CT Overlay scans, NOT a PET alone.
Information is Power.
Careful where you get it and careful how you use it.
-
- January 6, 2017 at 2:18 am
I am curious to know by what standard of measure is the Mayo clinic regarded as one of the top Melanoma Research Hospitals in the World.
If that were true, the majority of people here would be going there.
A final word about the PET thing. My guess is that you folks are getting PET/CT Overlay scans, NOT a PET alone.
Information is Power.
Careful where you get it and careful how you use it.
-
- January 5, 2017 at 7:17 pm
Hi Toby, I am also a Mayo Patient (stage 4) and have been going since 2012. Currently receiving pembro since June and I have had Pet scans every 3 months since 2013. Have had almost all of the Melanoma specialists here when I come for treatment every 3 wks. but Dr Markovic overseas my care now. Just had treatment on Jan.3 but didn't have Markovic. Mayo is known as one of the top Melanoma research hospitals in the WORLD for those of you not familiar with them Currently trying to kill a large sternum tumor since 2014 and my September scans showed a 60% reduction in size and my December scan showed another reduction of 50% since Sept. so looks like were going in the right direction.Side affects of Pembro have been pretty much fatigue only. My previous posts have been mostly titled sternum and sternum reoccurrence. Nice to see here of some Mayo patients here. Good luck to all and a Blessed New Year to everyone. Beans
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