› Forums › General Melanoma Community › PET or MRI scans necessary?
- This topic has 15 replies, 5 voices, and was last updated 11 years, 2 months ago by
ed williams.
- Post
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- June 29, 2014 at 4:48 am
Hello everyone,
I'm back with what is probably only the beginning of the newbie questions.
The basics: fiancé diagnosed with melanoma last week. Breslow thickness 1.15 mm, Clark level 3/4, mitotic rate 1, no ulceration, melanoma excised with clear (but very narrow) margins, abdominal ultrasound, chest x-ray and bloodwork all clear. First appointment with melanoma specialist the week after next.
We anticipate that the next step is the wide local excision and the sentinel lymph node biopsy. We are really hoping that the SNB comes back negative. If it doesn't, I guess we start looking at treatment options.
If it is negative, however, are there other scans or imaging technologies we should be pushing for to ensure that there really is no melanoma elsewhere in the body? I've read about PET and MRI scans being used in more advanced cases, but it sounds like for stage 1 melanomas, if the SNB is negative, doctors usually say "congratulations" and send you home. However, fiancé is concerned that the SNB might miss some signs of spread. Would it be worthwhile to push for further scanning (in addition to the already-completed chest x-Ray and ultrasound), or would that be excessive? (I should add that we're in Canada so insurance coverage or costs are not an issue).
Thanks in advance for any ideas you might have.
- Replies
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- June 29, 2014 at 9:01 am
Hi Ocelot,I too am a patient from Canada (please see my profile for details) May I ask where you guys are located? I am in Ontario and even with Stage III patients like myself that are NED they do not perform scanning (PET,CT or MRI) unless there is convincing evidence of probable disease. I think the best thing to do right now is to go through with the SLNB and hopefully all is all clear. Once you have the results of that then you and your medical team can decide what to do next.
Best of luck to your fiancée
Samuel
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- June 29, 2014 at 9:01 am
Hi Ocelot,I too am a patient from Canada (please see my profile for details) May I ask where you guys are located? I am in Ontario and even with Stage III patients like myself that are NED they do not perform scanning (PET,CT or MRI) unless there is convincing evidence of probable disease. I think the best thing to do right now is to go through with the SLNB and hopefully all is all clear. Once you have the results of that then you and your medical team can decide what to do next.
Best of luck to your fiancée
Samuel
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- June 29, 2014 at 9:01 am
Hi Ocelot,I too am a patient from Canada (please see my profile for details) May I ask where you guys are located? I am in Ontario and even with Stage III patients like myself that are NED they do not perform scanning (PET,CT or MRI) unless there is convincing evidence of probable disease. I think the best thing to do right now is to go through with the SLNB and hopefully all is all clear. Once you have the results of that then you and your medical team can decide what to do next.
Best of luck to your fiancée
Samuel
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- June 29, 2014 at 8:31 pm
Sorry you have to deal with this.
I know how scary this whole melanoma thing is, been there done that. For your fiance's stage, unless upstaged by the SNB, he would not need any further scans ex. PET / CT. Both expose you to high doses of radiation and due to thier extreme sensitivity, result in MANY false positives. Then you have more surgery to deal with that etc.
In all probability melanoma usually comes back to the nodal basin. That being the case, there is argument for following up with ultrasound of the basin to catch anything earlier. The chest x-ray and bloodwork are controversial as they have a very low yeild on catching any advancement. Chest x-rays once or twice a year are far more benign than CT so would be a happy compromise as far as scanning. Bloodwork won't become abnormal until there is enogh disease to cause abnormalities at which point most people have symptoms that would warrant a follow up check anyway.
A good PE and skin check is the best follow up for his stage at this time. Hopefully the SNB is clear.
I do realize that skip metastasis and blood stream spread occur with mel but at a much lower rate. Unfortunately I was one of those. Now stage IV but NED for almost 5 years after HD IL-2 and lung surgery. I am currently pushing to drop the PET/CT all together since I have had no less than 6. Radiation exposure never goes away and is cumulative. I am only 46 and don't want to initiate another cancer. Thats just me though :).
-
- June 29, 2014 at 8:31 pm
Sorry you have to deal with this.
I know how scary this whole melanoma thing is, been there done that. For your fiance's stage, unless upstaged by the SNB, he would not need any further scans ex. PET / CT. Both expose you to high doses of radiation and due to thier extreme sensitivity, result in MANY false positives. Then you have more surgery to deal with that etc.
In all probability melanoma usually comes back to the nodal basin. That being the case, there is argument for following up with ultrasound of the basin to catch anything earlier. The chest x-ray and bloodwork are controversial as they have a very low yeild on catching any advancement. Chest x-rays once or twice a year are far more benign than CT so would be a happy compromise as far as scanning. Bloodwork won't become abnormal until there is enogh disease to cause abnormalities at which point most people have symptoms that would warrant a follow up check anyway.
A good PE and skin check is the best follow up for his stage at this time. Hopefully the SNB is clear.
I do realize that skip metastasis and blood stream spread occur with mel but at a much lower rate. Unfortunately I was one of those. Now stage IV but NED for almost 5 years after HD IL-2 and lung surgery. I am currently pushing to drop the PET/CT all together since I have had no less than 6. Radiation exposure never goes away and is cumulative. I am only 46 and don't want to initiate another cancer. Thats just me though :).
-
- June 30, 2014 at 12:47 am
Hello Samuel, we're in Alberta and quite new to this, so don't know what the standards of care are. From reading on this site and others, it sounds like the sorts of scans are not useful for staging purposes, and are mainly used to monitor patients in stages 3 and 4 after the existence of metastatic disease has already been established through other means.
Kim K – thanks for the info. The massive amounts of radiation in a PET scan are not something we'd like to incur unless there's a strong probability of a benefit, and it sounds like there probably isn't, at this point.
it it sounds like following the SNB, either a) it's negative, in which case we are very relieved and go back to careful self-monitoring and follow-up; or b) it's positive, in which case we're looking at more lymph business surgery to remove the rest of the nodes, and possibly adjuvant therapy, of which interferon seems to be the most common – then back to more watching and waiting to see if symptoms show up anywhere else in the body. Does that sound more or less right?
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- June 30, 2014 at 12:47 am
Hello Samuel, we're in Alberta and quite new to this, so don't know what the standards of care are. From reading on this site and others, it sounds like the sorts of scans are not useful for staging purposes, and are mainly used to monitor patients in stages 3 and 4 after the existence of metastatic disease has already been established through other means.
Kim K – thanks for the info. The massive amounts of radiation in a PET scan are not something we'd like to incur unless there's a strong probability of a benefit, and it sounds like there probably isn't, at this point.
it it sounds like following the SNB, either a) it's negative, in which case we are very relieved and go back to careful self-monitoring and follow-up; or b) it's positive, in which case we're looking at more lymph business surgery to remove the rest of the nodes, and possibly adjuvant therapy, of which interferon seems to be the most common – then back to more watching and waiting to see if symptoms show up anywhere else in the body. Does that sound more or less right?
-
- June 30, 2014 at 12:47 am
Hello Samuel, we're in Alberta and quite new to this, so don't know what the standards of care are. From reading on this site and others, it sounds like the sorts of scans are not useful for staging purposes, and are mainly used to monitor patients in stages 3 and 4 after the existence of metastatic disease has already been established through other means.
Kim K – thanks for the info. The massive amounts of radiation in a PET scan are not something we'd like to incur unless there's a strong probability of a benefit, and it sounds like there probably isn't, at this point.
it it sounds like following the SNB, either a) it's negative, in which case we are very relieved and go back to careful self-monitoring and follow-up; or b) it's positive, in which case we're looking at more lymph business surgery to remove the rest of the nodes, and possibly adjuvant therapy, of which interferon seems to be the most common – then back to more watching and waiting to see if symptoms show up anywhere else in the body. Does that sound more or less right?
-
- June 30, 2014 at 1:06 am
RE: I am currently pushing to drop the PET/CT all together since I have had no less than 6. Radiation exposure never goes away and is cumulative. I am only 46 and don't want to initiate another cancer. That's just me though :).—————————————-To be 46 again… one can only dream 😉WOW…. finally someone else that doesn't want to do more scans… more research… means more cures!My oncologist wanted me to do more CAT scans to evaluate my progress and I told him about 3 different ways to check for reoccurrence. I did two of the three test for under $100.00. The third one is about $850.00, which I would gladly pay for had the first two tests warrant that I take the third test.The good news is that I am still NED. I will redo these tests periodically. We both agreed that if the test reading would change that we would regroup. These tests use urine or blood without radiation.To determine if one still has cancer in their system, see the following links.-
http://www.healingcancernaturally.com/alternative-diagnostic… Cached
Pregnancy test for cancer screening? Edward Griffin claims that the cancer can be detected by simple pregnancy test, with an accuracy of better than 92%, …
The most accurate pregnancy test is made by "Aimstrip" I bought mine online from a company called Earth Magic on http://www.Amazon.com My testing strip were delivered quickly in a few days. The cost is about $2.50 each.If you do the pregnancy test and it comes back positive, I can give you the names of other tests to determine how much of the cancer is still present in your body.————————————-Most people don't know that 70 to 80% of all cancers could be prevented by having their vitamin D3 levels in the higher testing range. Testing is a must. Your doctor can add this test to the rest of blood testing that you are all ready doing. You can also do this on your own. The SUN is the best way to increase your vitamin D3 levels. Lunch time is the best, no sunscreen and no sunburns!!! In my opinion, it's time to quit blaming the the SUN as the cause of melanoma as the SUN is the source of life. Maybe we should focus more on our personal lifestyles,stress,lack of sleep and one's diet!-
-
articles.mercola.com/sites/articles/archive/2013/02/07…
To measure your vitamin D performance and discover how it affects your health, you have to know your vitamin D serum levels and health status first.
————————————–Selenium is also a must.—————————————COQ 10 is also a must, especially if you are on statin drugs. Buy Ubiquinol not Ubiqionefrom a local health store not from Walgreen or Walmart.————————————–If you have had radiation, Iodine is a must. Dr. David Brownstein is the expert on this subject.see, https://search.yahoo.com/search;_ylt=A0LEVzAqnK1TXHoAHnZXNyoA;_ylc=X1MDMjc2NjY3OQRfcgMyBGJjawM0OTc3M2RkOG5tZTgzJTI2YiUzRDMlMjZzJTNEOGUEZnIDeWZwLXQtMzAxBGdwcmlkAzZNbDV6dG1DUUpPWGdOdVpFUHplWkEEbXRlc3RpZANBRE1SJTNEU01FNDA0JTI2QURTUlAlM0RTTUU0MzklMjZBU1NUJTNEQVNTVEMxJTI2TE9DTUxSJTNEVklQMDUxJTI2VUkwMSUzRFZJUDQ1OCUyNlVOSSUzRFVOSUMxBG5fcnNsdAM4BG5fc3VnZwMxMARvcmlnaW4Dc2VhcmNoLnlhaG9vLmNvbQRwb3MDMTAEcHFzdHIDRGF2aWQgQnJvd25zdGVpbgRwcXN0cmwDMTYEcXN0cmwDMjMEcXVlcnkDZGF2aWQgYnJvd25zdGVpbiBpb2RpbmUEdF9zdG1wAzE0MDM4ODc3ODc3NTYEdnRlc3RpZANWSVA0NTg-?gprid=6Ml5ztmCQJOXgNuZEPzeZA&pvid=xUOStjk4LjFEnONrUXs5AwtTNzEuN1OtnCr_gfRo&p=david+brownstein+iodine&fr2=sa-gp&fr=yfp-t-301—————————————Magnesium is referred to as the spark plug of life. Soaking your feet with a little of Epson salt is one of the better way to get it into your system. Adding some to bath water also will work.————————————–Please sign up for the free get healthy daily emails fromandA lot can be learned from reading their daily info.————————————–Best wishes,Gene -
- June 30, 2014 at 1:06 am
RE: I am currently pushing to drop the PET/CT all together since I have had no less than 6. Radiation exposure never goes away and is cumulative. I am only 46 and don't want to initiate another cancer. That's just me though :).—————————————-To be 46 again… one can only dream 😉WOW…. finally someone else that doesn't want to do more scans… more research… means more cures!My oncologist wanted me to do more CAT scans to evaluate my progress and I told him about 3 different ways to check for reoccurrence. I did two of the three test for under $100.00. The third one is about $850.00, which I would gladly pay for had the first two tests warrant that I take the third test.The good news is that I am still NED. I will redo these tests periodically. We both agreed that if the test reading would change that we would regroup. These tests use urine or blood without radiation.To determine if one still has cancer in their system, see the following links.-
http://www.healingcancernaturally.com/alternative-diagnostic… Cached
Pregnancy test for cancer screening? Edward Griffin claims that the cancer can be detected by simple pregnancy test, with an accuracy of better than 92%, …
The most accurate pregnancy test is made by "Aimstrip" I bought mine online from a company called Earth Magic on http://www.Amazon.com My testing strip were delivered quickly in a few days. The cost is about $2.50 each.If you do the pregnancy test and it comes back positive, I can give you the names of other tests to determine how much of the cancer is still present in your body.————————————-Most people don't know that 70 to 80% of all cancers could be prevented by having their vitamin D3 levels in the higher testing range. Testing is a must. Your doctor can add this test to the rest of blood testing that you are all ready doing. You can also do this on your own. The SUN is the best way to increase your vitamin D3 levels. Lunch time is the best, no sunscreen and no sunburns!!! In my opinion, it's time to quit blaming the the SUN as the cause of melanoma as the SUN is the source of life. Maybe we should focus more on our personal lifestyles,stress,lack of sleep and one's diet!-
-
articles.mercola.com/sites/articles/archive/2013/02/07…
To measure your vitamin D performance and discover how it affects your health, you have to know your vitamin D serum levels and health status first.
————————————–Selenium is also a must.—————————————COQ 10 is also a must, especially if you are on statin drugs. Buy Ubiquinol not Ubiqionefrom a local health store not from Walgreen or Walmart.————————————–If you have had radiation, Iodine is a must. Dr. David Brownstein is the expert on this subject.see, https://search.yahoo.com/search;_ylt=A0LEVzAqnK1TXHoAHnZXNyoA;_ylc=X1MDMjc2NjY3OQRfcgMyBGJjawM0OTc3M2RkOG5tZTgzJTI2YiUzRDMlMjZzJTNEOGUEZnIDeWZwLXQtMzAxBGdwcmlkAzZNbDV6dG1DUUpPWGdOdVpFUHplWkEEbXRlc3RpZANBRE1SJTNEU01FNDA0JTI2QURTUlAlM0RTTUU0MzklMjZBU1NUJTNEQVNTVEMxJTI2TE9DTUxSJTNEVklQMDUxJTI2VUkwMSUzRFZJUDQ1OCUyNlVOSSUzRFVOSUMxBG5fcnNsdAM4BG5fc3VnZwMxMARvcmlnaW4Dc2VhcmNoLnlhaG9vLmNvbQRwb3MDMTAEcHFzdHIDRGF2aWQgQnJvd25zdGVpbgRwcXN0cmwDMTYEcXN0cmwDMjMEcXVlcnkDZGF2aWQgYnJvd25zdGVpbiBpb2RpbmUEdF9zdG1wAzE0MDM4ODc3ODc3NTYEdnRlc3RpZANWSVA0NTg-?gprid=6Ml5ztmCQJOXgNuZEPzeZA&pvid=xUOStjk4LjFEnONrUXs5AwtTNzEuN1OtnCr_gfRo&p=david+brownstein+iodine&fr2=sa-gp&fr=yfp-t-301—————————————Magnesium is referred to as the spark plug of life. Soaking your feet with a little of Epson salt is one of the better way to get it into your system. Adding some to bath water also will work.————————————–Please sign up for the free get healthy daily emails fromandA lot can be learned from reading their daily info.————————————–Best wishes,Gene -
- July 1, 2014 at 5:00 am
Hi Ocelot, I have been following the comments on your last two posts and thought that I might be of some help. The meeting with the Oncologist should help a lot, write down your questions so you don't forget any of them. Catching Melanoma early is the best possible news at this point. You might only have to be followed by a dermatologist every 3 to 4 months at this point. I am not an expert when it comes to if they will do a sentinel node biopsy or not, but I am hoping it is a " no" at this point. I have been stage 4 since last June 2013 and I am presently on a Bristol Meyer Squibb phase 3 trial of Nivolumab or Ipilimumab or both together. I have been living with Melanoma now since the fall of 2011. I was stage 3 from the beginning ( didn't catch the mole early). My best advice to you right now is slow down and stop reading about Melanoma on line. 3 years ago when my adventure started I went on line and starting looking at the different stages and how long people lived in each. I would have given anything at that time to be stage 1. Tuesday is Canada day so go out and have a good time!!!!! Best Wishes Ed from Ottawa
-
- July 1, 2014 at 5:00 am
Hi Ocelot, I have been following the comments on your last two posts and thought that I might be of some help. The meeting with the Oncologist should help a lot, write down your questions so you don't forget any of them. Catching Melanoma early is the best possible news at this point. You might only have to be followed by a dermatologist every 3 to 4 months at this point. I am not an expert when it comes to if they will do a sentinel node biopsy or not, but I am hoping it is a " no" at this point. I have been stage 4 since last June 2013 and I am presently on a Bristol Meyer Squibb phase 3 trial of Nivolumab or Ipilimumab or both together. I have been living with Melanoma now since the fall of 2011. I was stage 3 from the beginning ( didn't catch the mole early). My best advice to you right now is slow down and stop reading about Melanoma on line. 3 years ago when my adventure started I went on line and starting looking at the different stages and how long people lived in each. I would have given anything at that time to be stage 1. Tuesday is Canada day so go out and have a good time!!!!! Best Wishes Ed from Ottawa
-
- July 1, 2014 at 5:00 am
Hi Ocelot, I have been following the comments on your last two posts and thought that I might be of some help. The meeting with the Oncologist should help a lot, write down your questions so you don't forget any of them. Catching Melanoma early is the best possible news at this point. You might only have to be followed by a dermatologist every 3 to 4 months at this point. I am not an expert when it comes to if they will do a sentinel node biopsy or not, but I am hoping it is a " no" at this point. I have been stage 4 since last June 2013 and I am presently on a Bristol Meyer Squibb phase 3 trial of Nivolumab or Ipilimumab or both together. I have been living with Melanoma now since the fall of 2011. I was stage 3 from the beginning ( didn't catch the mole early). My best advice to you right now is slow down and stop reading about Melanoma on line. 3 years ago when my adventure started I went on line and starting looking at the different stages and how long people lived in each. I would have given anything at that time to be stage 1. Tuesday is Canada day so go out and have a good time!!!!! Best Wishes Ed from Ottawa
-
- June 30, 2014 at 1:06 am
RE: I am currently pushing to drop the PET/CT all together since I have had no less than 6. Radiation exposure never goes away and is cumulative. I am only 46 and don't want to initiate another cancer. That's just me though :).—————————————-To be 46 again… one can only dream 😉WOW…. finally someone else that doesn't want to do more scans… more research… means more cures!My oncologist wanted me to do more CAT scans to evaluate my progress and I told him about 3 different ways to check for reoccurrence. I did two of the three test for under $100.00. The third one is about $850.00, which I would gladly pay for had the first two tests warrant that I take the third test.The good news is that I am still NED. I will redo these tests periodically. We both agreed that if the test reading would change that we would regroup. These tests use urine or blood without radiation.To determine if one still has cancer in their system, see the following links.-
http://www.healingcancernaturally.com/alternative-diagnostic… Cached
Pregnancy test for cancer screening? Edward Griffin claims that the cancer can be detected by simple pregnancy test, with an accuracy of better than 92%, …
The most accurate pregnancy test is made by "Aimstrip" I bought mine online from a company called Earth Magic on http://www.Amazon.com My testing strip were delivered quickly in a few days. The cost is about $2.50 each.If you do the pregnancy test and it comes back positive, I can give you the names of other tests to determine how much of the cancer is still present in your body.————————————-Most people don't know that 70 to 80% of all cancers could be prevented by having their vitamin D3 levels in the higher testing range. Testing is a must. Your doctor can add this test to the rest of blood testing that you are all ready doing. You can also do this on your own. The SUN is the best way to increase your vitamin D3 levels. Lunch time is the best, no sunscreen and no sunburns!!! In my opinion, it's time to quit blaming the the SUN as the cause of melanoma as the SUN is the source of life. Maybe we should focus more on our personal lifestyles,stress,lack of sleep and one's diet!-
-
articles.mercola.com/sites/articles/archive/2013/02/07…
To measure your vitamin D performance and discover how it affects your health, you have to know your vitamin D serum levels and health status first.
————————————–Selenium is also a must.—————————————COQ 10 is also a must, especially if you are on statin drugs. Buy Ubiquinol not Ubiqionefrom a local health store not from Walgreen or Walmart.————————————–If you have had radiation, Iodine is a must. Dr. David Brownstein is the expert on this subject.see, https://search.yahoo.com/search;_ylt=A0LEVzAqnK1TXHoAHnZXNyoA;_ylc=X1MDMjc2NjY3OQRfcgMyBGJjawM0OTc3M2RkOG5tZTgzJTI2YiUzRDMlMjZzJTNEOGUEZnIDeWZwLXQtMzAxBGdwcmlkAzZNbDV6dG1DUUpPWGdOdVpFUHplWkEEbXRlc3RpZANBRE1SJTNEU01FNDA0JTI2QURTUlAlM0RTTUU0MzklMjZBU1NUJTNEQVNTVEMxJTI2TE9DTUxSJTNEVklQMDUxJTI2VUkwMSUzRFZJUDQ1OCUyNlVOSSUzRFVOSUMxBG5fcnNsdAM4BG5fc3VnZwMxMARvcmlnaW4Dc2VhcmNoLnlhaG9vLmNvbQRwb3MDMTAEcHFzdHIDRGF2aWQgQnJvd25zdGVpbgRwcXN0cmwDMTYEcXN0cmwDMjMEcXVlcnkDZGF2aWQgYnJvd25zdGVpbiBpb2RpbmUEdF9zdG1wAzE0MDM4ODc3ODc3NTYEdnRlc3RpZANWSVA0NTg-?gprid=6Ml5ztmCQJOXgNuZEPzeZA&pvid=xUOStjk4LjFEnONrUXs5AwtTNzEuN1OtnCr_gfRo&p=david+brownstein+iodine&fr2=sa-gp&fr=yfp-t-301—————————————Magnesium is referred to as the spark plug of life. Soaking your feet with a little of Epson salt is one of the better way to get it into your system. Adding some to bath water also will work.————————————–Please sign up for the free get healthy daily emails fromandA lot can be learned from reading their daily info.————————————–Best wishes,Gene
-
- June 29, 2014 at 8:31 pm
Sorry you have to deal with this.
I know how scary this whole melanoma thing is, been there done that. For your fiance's stage, unless upstaged by the SNB, he would not need any further scans ex. PET / CT. Both expose you to high doses of radiation and due to thier extreme sensitivity, result in MANY false positives. Then you have more surgery to deal with that etc.
In all probability melanoma usually comes back to the nodal basin. That being the case, there is argument for following up with ultrasound of the basin to catch anything earlier. The chest x-ray and bloodwork are controversial as they have a very low yeild on catching any advancement. Chest x-rays once or twice a year are far more benign than CT so would be a happy compromise as far as scanning. Bloodwork won't become abnormal until there is enogh disease to cause abnormalities at which point most people have symptoms that would warrant a follow up check anyway.
A good PE and skin check is the best follow up for his stage at this time. Hopefully the SNB is clear.
I do realize that skip metastasis and blood stream spread occur with mel but at a much lower rate. Unfortunately I was one of those. Now stage IV but NED for almost 5 years after HD IL-2 and lung surgery. I am currently pushing to drop the PET/CT all together since I have had no less than 6. Radiation exposure never goes away and is cumulative. I am only 46 and don't want to initiate another cancer. Thats just me though :).
-
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