Hi: PET scan is a better way to check for cancer reoccurrence than MRI. MRI can‘t distinguish easily between old scar tissue and active cancer tissue unless there is a difference in size. PET scans can detect “hot” spots that are active.
Hi @donsunlover, This is a difficult decision. Knowing early about a recurrence or progression is so important. I'm very encouraged that we're heading toward a world where we have access to tests such as these as general cancer screenings. The criteria and limitations to our current screening methods are not enough to make most of us feel comfortable.
My understanding is that these tests are detecting tumor cells in the blood stream. My cancer diagnosis was refined to a specific gene mutation by using a blood test from FoundationOne. My tumors were shedding a significant amount of tumor DNA at that time, but as a never-smoker, lung cancer screening never crossed my mind, or my doctor's mind. Testing like this may have identified my cancer at an earlier/curable stage.
One question I would have for this type of testing, is that even if the cloudiness seen on your MRI is cancerous, would that cloud be enough to be shedding cells (or enough cells) to make a determination. Sorry, I know that's not that helpful, more doubt.
Have your MRI results shown any changes over time? How often are you getting scans?
Hi @donsunlover, This is a difficult decision. Knowing early about a recurrence or progression is so important. I'm very encouraged that we're heading toward a world where we have access to tests such as these as general cancer screenings. The criteria and limitations to our current screening methods are not enough to make most of us feel comfortable.
My understanding is that these tests are detecting tumor cells in the blood stream. My cancer diagnosis was refined to a specific gene mutation by using a blood test from FoundationOne. My tumors were shedding a significant amount of tumor DNA at that time, but as a never-smoker, lung cancer screening never crossed my mind, or my doctor's mind. Testing like this may have identified my cancer at an earlier/curable stage.
One question I would have for this type of testing, is that even if the cloudiness seen on your MRI is cancerous, would that cloud be enough to be shedding cells (or enough cells) to make a determination. Sorry, I know that's not that helpful, more doubt.
Have your MRI results shown any changes over time? How often are you getting scans?
Thanks for your input. All these test are very new and likely will be improved continually for some time. What they offer now is much better than current non-DNA tests. In my case the cloud as radiologists call it was not as dense as a tumor might be. Biopsy determined it was all scar tissue and tumor was gone. The Signatera test I take Is looking for the same DNA signature that they received from my original tumor biopsy. It should be the best test for recurrence.
As far as immunotherapy, I think it is miss-named because I don't believe it builds the immune system. Taking supplements like Timed release vitamin C and 95% curcuminoids both build the immune system and are known the fight cancer as well as provide other benefits..
I found about the Grail/Galleri test 1.5 years ago from another pancreatic cancer patient, who mentioned the test but had not had it done; from there, I read a little more about it in the popular press. I could not get a doctor to order it for me, but it was a pretty easy process going through Grail's on-line application process with a follow-up phone call. Same $945 self-pay (more expensive now?). They did indicate it was not intended for people on active therapy, so I was happy to use it as a back-up check to Signatera for recurrence or possible presence of other primary tumors before my pancreatic relapse occurred. After informing Grail of its false negative, I had hoped they might contact me for additional details or to offer a refund, LOL. I was disappointed but not surprised to hear nothing from them.
With my dad's mesothelioma, we were also concerned about some possible other primary tumors (prostate and urinary tract, suggested for follow-up after suspicious ultrasound) that might complicate or contraindicate his mesothelioma treatment, but his oncologist was totally dismissive of Grail/Galleri, because it was not yet FDA approved for general diagnostic use (considered OK as a "Lab-Developed Test)" and the PET scan didn't light up those areas as much as the mesothelioma did around his lungs. Too much single focus IMHO, but that's another topic...
Regarding Signatera: My oncology PA said it was not supersensitive for pancreatic cancer either... If negative, you might have cancer, and if positive, you almost definitely have cancer. As Lisa ( @lls8000 ) mentioned, my tumor's mutations were also confirmed by a DNA-based blood test (Guardant) which identified an ATM mutation but noted it could not distinguish somatic (environmental) cause from germline (hereditary) cause.
For Grail, there were early suggestions that it might be sensitive and useful for pancreatic cancer, but that seems to be diminishing over time, or at least the claims are being toned down.
Grail reported the following in 2019 here: https://grail.com/press-releases/grail-announces-positive-new-data-with-multi-cancer-early-detection-blood-test-from-ccga-study/
"Data showed GRAIL’s investigational multi-cancer blood test detected a strong signal for 12 deadly cancer types at early stages with a very high specificity of at least 99 percent (or a false positive rate of one percent or less). In addition, the test identified where the cancer originated in the body (the tissue of origin) with high accuracy...."
and
"...Detection rates (sensitivity) for the 12 deadly cancer types ranged from 59 to 86 percent at early stages (stages I-III). A combined analysis of this group of cancers showed robust detection at early stages (34 percent, 77 percent, and 84 percent at stages I, II, and III, respectively)."
They reported 78% sensitivity for detecting pancreatic cancer between stages 1-3 overall. See the link above for more tables and data.
But a 5/11/2023 paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10210587/
"Alternatively, most current liquid biopsy tests rely on sequencing and detection of cancer-derived fractions of cell-free DNA (cfDNA) (8). Since many of these tests have been developed for screening average-risk patients, they face challenges for use with high-risk patients. As an example, the commercially-available test, Galleri® by Grail, has a 16.8% sensitivity for stage I pan-cancer, which severely limits the test’s ability to rule out the presence of cancer (9)." -- Reference (9) was published in 2021.
Overall, I'm not against the DNA-based tests; I see them as one tool in the toolbox. If you're asymptomatic and not high-risk, the chance of a false-negative seems low, but don't let that lull you into total complacency. It's always good to verify anything with a second, independent, and hopefully non-invasive method. (e.g., for pancreatic cancer, I also monitored my CA19-9 level, and it was actually an earlier indicator of my recurrence than imaging or Signatera/Grail). If you're higher-risk, symptomatic, or testing positive on any one method, then please waste no time getting an independent follow-up. Time matters, and anything that helps narrow down the diagnosis saves time. Multiple blood tests are easy to do in parallel while you wait for more expensive/invasive scans and biopsies. (For blood tests, ask for germline mutation testing like Invitae and somatic mutation testing like Guardant sooner rather than later.)
I found about the Grail/Galleri test 1.5 years ago from another pancreatic cancer patient, who mentioned the test but had not had it done; from there, I read a little more about it in the popular press. I could not get a doctor to order it for me, but it was a pretty easy process going through Grail's on-line application process with a follow-up phone call. Same $945 self-pay (more expensive now?). They did indicate it was not intended for people on active therapy, so I was happy to use it as a back-up check to Signatera for recurrence or possible presence of other primary tumors before my pancreatic relapse occurred. After informing Grail of its false negative, I had hoped they might contact me for additional details or to offer a refund, LOL. I was disappointed but not surprised to hear nothing from them.
With my dad's mesothelioma, we were also concerned about some possible other primary tumors (prostate and urinary tract, suggested for follow-up after suspicious ultrasound) that might complicate or contraindicate his mesothelioma treatment, but his oncologist was totally dismissive of Grail/Galleri, because it was not yet FDA approved for general diagnostic use (considered OK as a "Lab-Developed Test)" and the PET scan didn't light up those areas as much as the mesothelioma did around his lungs. Too much single focus IMHO, but that's another topic...
Regarding Signatera: My oncology PA said it was not supersensitive for pancreatic cancer either... If negative, you might have cancer, and if positive, you almost definitely have cancer. As Lisa ( @lls8000 ) mentioned, my tumor's mutations were also confirmed by a DNA-based blood test (Guardant) which identified an ATM mutation but noted it could not distinguish somatic (environmental) cause from germline (hereditary) cause.
For Grail, there were early suggestions that it might be sensitive and useful for pancreatic cancer, but that seems to be diminishing over time, or at least the claims are being toned down.
Grail reported the following in 2019 here: https://grail.com/press-releases/grail-announces-positive-new-data-with-multi-cancer-early-detection-blood-test-from-ccga-study/
"Data showed GRAIL’s investigational multi-cancer blood test detected a strong signal for 12 deadly cancer types at early stages with a very high specificity of at least 99 percent (or a false positive rate of one percent or less). In addition, the test identified where the cancer originated in the body (the tissue of origin) with high accuracy...."
and
"...Detection rates (sensitivity) for the 12 deadly cancer types ranged from 59 to 86 percent at early stages (stages I-III). A combined analysis of this group of cancers showed robust detection at early stages (34 percent, 77 percent, and 84 percent at stages I, II, and III, respectively)."
They reported 78% sensitivity for detecting pancreatic cancer between stages 1-3 overall. See the link above for more tables and data.
But a 5/11/2023 paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10210587/
"Alternatively, most current liquid biopsy tests rely on sequencing and detection of cancer-derived fractions of cell-free DNA (cfDNA) (8). Since many of these tests have been developed for screening average-risk patients, they face challenges for use with high-risk patients. As an example, the commercially-available test, Galleri® by Grail, has a 16.8% sensitivity for stage I pan-cancer, which severely limits the test’s ability to rule out the presence of cancer (9)." -- Reference (9) was published in 2021.
Overall, I'm not against the DNA-based tests; I see them as one tool in the toolbox. If you're asymptomatic and not high-risk, the chance of a false-negative seems low, but don't let that lull you into total complacency. It's always good to verify anything with a second, independent, and hopefully non-invasive method. (e.g., for pancreatic cancer, I also monitored my CA19-9 level, and it was actually an earlier indicator of my recurrence than imaging or Signatera/Grail). If you're higher-risk, symptomatic, or testing positive on any one method, then please waste no time getting an independent follow-up. Time matters, and anything that helps narrow down the diagnosis saves time. Multiple blood tests are easy to do in parallel while you wait for more expensive/invasive scans and biopsies. (For blood tests, ask for germline mutation testing like Invitae and somatic mutation testing like Guardant sooner rather than later.)
Thank you so much for your very informative contribution to the discussion. I have not been treated nor diagnosed with cancer; however have a mother with a large, presumed benign ovarian cyst and a sister who is now in remission from a second bout of non aggressive ovarian cancer. She was poorly treated first time around but treated much more comprehensively at MD Anderson. Not sure how to be able to best monitor myself in the event I am in early stages. My sister‘s cancer is not genetically based.
Hi: PET scan is a better way to check for cancer reoccurrence than MRI. MRI can‘t distinguish easily between old scar tissue and active cancer tissue unless there is a difference in size. PET scans can detect “hot” spots that are active.
Back in the early 2000s the Pet scan showed a hot area in my lung. I was rushed off for a thoracotomy, had a portion of my lung removed where there was a tumor, but it turned out to be a benign tumor that could have remained there and be followed with CT scans to see if it grew. It turned out to be Valley Fever spores that had lodged in my lung and my body recognized a foreign invader and build cells around it to isolate it. Valley Fever could be detected by a simple blood test which the doctors should have known to give me. It was a very difficult surgery and recuperation because I had residual pain where they cut me for years after.
I also had a metastasis of endometrial cancer. I had surgery and a lot of radiation. This also took quite some time to recuperate because the metastasis was on my outer colon and hip bone. About two years later with much after effects from the colon resection, I was given a Pet scan and was told the hot spot compared to the previous one when the metastasis was first discovered had grown much larger and it was very hot. They said my cancer must be back. That was in 2004. I'm still here and the cancer had not returned. I, however, just was treated for bladder cancer which was a result from the massive amount of radiation I got. After a year of chemo in my bladder monthly, I'm doing fine. The Pet scan is not the be all and end all of tests is my conclusion.
Back in the early 2000s the Pet scan showed a hot area in my lung. I was rushed off for a thoracotomy, had a portion of my lung removed where there was a tumor, but it turned out to be a benign tumor that could have remained there and be followed with CT scans to see if it grew. It turned out to be Valley Fever spores that had lodged in my lung and my body recognized a foreign invader and build cells around it to isolate it. Valley Fever could be detected by a simple blood test which the doctors should have known to give me. It was a very difficult surgery and recuperation because I had residual pain where they cut me for years after.
I also had a metastasis of endometrial cancer. I had surgery and a lot of radiation. This also took quite some time to recuperate because the metastasis was on my outer colon and hip bone. About two years later with much after effects from the colon resection, I was given a Pet scan and was told the hot spot compared to the previous one when the metastasis was first discovered had grown much larger and it was very hot. They said my cancer must be back. That was in 2004. I'm still here and the cancer had not returned. I, however, just was treated for bladder cancer which was a result from the massive amount of radiation I got. After a year of chemo in my bladder monthly, I'm doing fine. The Pet scan is not the be all and end all of tests is my conclusion.
That is good to know. I am sorry to hear about your experience and hope you are feeling much better now.
I think much depends on other criteria lining up with scan results. While CT and MRIs can detect anomalies they may be less helpful in instances where the initial cancer treatment leaves a scar. The question becomes is it active or just a scar. That being said, much depends on the experience of the radiologist interpreting the scan. It is important to recognize and acknowledge your experience. No one method of follow up is perfect. Wishing you the very best….
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Hi: PET scan is a better way to check for cancer reoccurrence than MRI. MRI can‘t distinguish easily between old scar tissue and active cancer tissue unless there is a difference in size. PET scans can detect “hot” spots that are active.
Thanks for sharing.
Hi @donsunlover, This is a difficult decision. Knowing early about a recurrence or progression is so important. I'm very encouraged that we're heading toward a world where we have access to tests such as these as general cancer screenings. The criteria and limitations to our current screening methods are not enough to make most of us feel comfortable.
My understanding is that these tests are detecting tumor cells in the blood stream. My cancer diagnosis was refined to a specific gene mutation by using a blood test from FoundationOne. My tumors were shedding a significant amount of tumor DNA at that time, but as a never-smoker, lung cancer screening never crossed my mind, or my doctor's mind. Testing like this may have identified my cancer at an earlier/curable stage.
One question I would have for this type of testing, is that even if the cloudiness seen on your MRI is cancerous, would that cloud be enough to be shedding cells (or enough cells) to make a determination. Sorry, I know that's not that helpful, more doubt.
Have your MRI results shown any changes over time? How often are you getting scans?
Thanks for your input. All these test are very new and likely will be improved continually for some time. What they offer now is much better than current non-DNA tests. In my case the cloud as radiologists call it was not as dense as a tumor might be. Biopsy determined it was all scar tissue and tumor was gone. The Signatera test I take Is looking for the same DNA signature that they received from my original tumor biopsy. It should be the best test for recurrence.
As far as immunotherapy, I think it is miss-named because I don't believe it builds the immune system. Taking supplements like Timed release vitamin C and 95% curcuminoids both build the immune system and are known the fight cancer as well as provide other benefits..
I found about the Grail/Galleri test 1.5 years ago from another pancreatic cancer patient, who mentioned the test but had not had it done; from there, I read a little more about it in the popular press. I could not get a doctor to order it for me, but it was a pretty easy process going through Grail's on-line application process with a follow-up phone call. Same $945 self-pay (more expensive now?). They did indicate it was not intended for people on active therapy, so I was happy to use it as a back-up check to Signatera for recurrence or possible presence of other primary tumors before my pancreatic relapse occurred. After informing Grail of its false negative, I had hoped they might contact me for additional details or to offer a refund, LOL. I was disappointed but not surprised to hear nothing from them.
With my dad's mesothelioma, we were also concerned about some possible other primary tumors (prostate and urinary tract, suggested for follow-up after suspicious ultrasound) that might complicate or contraindicate his mesothelioma treatment, but his oncologist was totally dismissive of Grail/Galleri, because it was not yet FDA approved for general diagnostic use (considered OK as a "Lab-Developed Test)" and the PET scan didn't light up those areas as much as the mesothelioma did around his lungs. Too much single focus IMHO, but that's another topic...
Regarding Signatera: My oncology PA said it was not supersensitive for pancreatic cancer either... If negative, you might have cancer, and if positive, you almost definitely have cancer. As Lisa ( @lls8000 ) mentioned, my tumor's mutations were also confirmed by a DNA-based blood test (Guardant) which identified an ATM mutation but noted it could not distinguish somatic (environmental) cause from germline (hereditary) cause.
For Grail, there were early suggestions that it might be sensitive and useful for pancreatic cancer, but that seems to be diminishing over time, or at least the claims are being toned down.
Grail reported the following in 2019 here: https://grail.com/press-releases/grail-announces-positive-new-data-with-multi-cancer-early-detection-blood-test-from-ccga-study/
"Data showed GRAIL’s investigational multi-cancer blood test detected a strong signal for 12 deadly cancer types at early stages with a very high specificity of at least 99 percent (or a false positive rate of one percent or less). In addition, the test identified where the cancer originated in the body (the tissue of origin) with high accuracy...."
and
"...Detection rates (sensitivity) for the 12 deadly cancer types ranged from 59 to 86 percent at early stages (stages I-III). A combined analysis of this group of cancers showed robust detection at early stages (34 percent, 77 percent, and 84 percent at stages I, II, and III, respectively)."
They reported 78% sensitivity for detecting pancreatic cancer between stages 1-3 overall. See the link above for more tables and data.
FWIW, Grail published their 2022 PATHFINDER study summary here:
https://grail.com/press-releases/grail-announces-final-results-from-the-pathfinder-multi-cancer-early-detection-screening-study-at-esmo-congress-2022/
But a 5/11/2023 paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10210587/
"Alternatively, most current liquid biopsy tests rely on sequencing and detection of cancer-derived fractions of cell-free DNA (cfDNA) (8). Since many of these tests have been developed for screening average-risk patients, they face challenges for use with high-risk patients. As an example, the commercially-available test, Galleri® by Grail, has a 16.8% sensitivity for stage I pan-cancer, which severely limits the test’s ability to rule out the presence of cancer (9)." -- Reference (9) was published in 2021.
Overall, I'm not against the DNA-based tests; I see them as one tool in the toolbox. If you're asymptomatic and not high-risk, the chance of a false-negative seems low, but don't let that lull you into total complacency. It's always good to verify anything with a second, independent, and hopefully non-invasive method. (e.g., for pancreatic cancer, I also monitored my CA19-9 level, and it was actually an earlier indicator of my recurrence than imaging or Signatera/Grail). If you're higher-risk, symptomatic, or testing positive on any one method, then please waste no time getting an independent follow-up. Time matters, and anything that helps narrow down the diagnosis saves time. Multiple blood tests are easy to do in parallel while you wait for more expensive/invasive scans and biopsies. (For blood tests, ask for germline mutation testing like Invitae and somatic mutation testing like Guardant sooner rather than later.)
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2 ReactionsThank you so much for your very informative contribution to the discussion. I have not been treated nor diagnosed with cancer; however have a mother with a large, presumed benign ovarian cyst and a sister who is now in remission from a second bout of non aggressive ovarian cancer. She was poorly treated first time around but treated much more comprehensively at MD Anderson. Not sure how to be able to best monitor myself in the event I am in early stages. My sister‘s cancer is not genetically based.
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1 ReactionNever heard of it. I do get gallium 68 tests.
Back in the early 2000s the Pet scan showed a hot area in my lung. I was rushed off for a thoracotomy, had a portion of my lung removed where there was a tumor, but it turned out to be a benign tumor that could have remained there and be followed with CT scans to see if it grew. It turned out to be Valley Fever spores that had lodged in my lung and my body recognized a foreign invader and build cells around it to isolate it. Valley Fever could be detected by a simple blood test which the doctors should have known to give me. It was a very difficult surgery and recuperation because I had residual pain where they cut me for years after.
I also had a metastasis of endometrial cancer. I had surgery and a lot of radiation. This also took quite some time to recuperate because the metastasis was on my outer colon and hip bone. About two years later with much after effects from the colon resection, I was given a Pet scan and was told the hot spot compared to the previous one when the metastasis was first discovered had grown much larger and it was very hot. They said my cancer must be back. That was in 2004. I'm still here and the cancer had not returned. I, however, just was treated for bladder cancer which was a result from the massive amount of radiation I got. After a year of chemo in my bladder monthly, I'm doing fine. The Pet scan is not the be all and end all of tests is my conclusion.
That is good to know. I am sorry to hear about your experience and hope you are feeling much better now.
I think much depends on other criteria lining up with scan results. While CT and MRIs can detect anomalies they may be less helpful in instances where the initial cancer treatment leaves a scar. The question becomes is it active or just a scar. That being said, much depends on the experience of the radiologist interpreting the scan. It is important to recognize and acknowledge your experience. No one method of follow up is perfect. Wishing you the very best….
Thanks for your thoughtful reply...much appreciated.