@surftohealth88 I was thinking about you’re reply (that I appreciated) and wondered if it would make sense for you to request the specific information about the types of cancer cell mutations that they discovered. I’m personally no longer comfortable trusting medical advice that I can’t understand, research and ask informed questions about options. The good doctors are eager to educate (why I’m going to Mayo). I’m sure others are also good but too many, unfortunately, just paint by the numbers. As a retired chemical engineer who was focused on measurement, both qualitative and quantitative, and the associated pipeline flow issues; I’m appalled at how many doctors fail to treat you individually, based on All discoverable Facts, not just broad statistics (assumptions). (Sorry- soapbox)
@zmarkv I understand that Biochemistry is more complex than my field but we took pains to analyze everything we could, even trace constituents and minute changes- and our focus didn’t involve a person. This makes the actions of broad brush “doctors” inexcusable.
@zmarkv I understand that Biochemistry is more complex than my field but we took pains to analyze everything we could, even trace constituents and minute changes- and our focus didn’t involve a person. This makes the actions of broad brush “doctors” inexcusable.
What you and I might consider to be paint-by-numbers, one-size-fits-all treatment is called "evidence-based medicine" by the medical community, and is considered to be a good thing. In the good old days(?), doctors could make decisions about their patients' care based on their own experience and their knowledge of the patient. This meant that patients with the same disease and otherwise similar characteristics could get wildly different treatments depending on which doctor they saw and which hospital they were at. EBM came about as a way to standardize treatment based on what worked best for the most patients in large clinical trials. There are treatment guidelines for every disease that set up an algorithm. The doctor just has to plug certain features of your disease into the algorithm and it spits out the treatment you get. This is what the insurance company will cover and is what the doctor needs to do to avoid being sued. If genetic tests are not part of the algorithm, you don't get any genetic tests; they cost money, and there's nothing they can do with the results.
Thanks and I agree in general but there are some doctors that go the extra mile and some that don’t. Mayo, for example, educates their patients in ways to appeal to the insurance companies for procedures initially denied. Other places just take the easy road. Some genetic tests are free and others are not cost prohibitive. The paint by number approach is apparent by how they handle stage 4. Too many put you on ADT and give up any hope of a cure, basically “sorry, good luck”. Not all places and doctors are slaves to the algorithms. Some care, have a brain and offer sound advice based on your particulars,
What you and I might consider to be paint-by-numbers, one-size-fits-all treatment is called "evidence-based medicine" by the medical community, and is considered to be a good thing. In the good old days(?), doctors could make decisions about their patients' care based on their own experience and their knowledge of the patient. This meant that patients with the same disease and otherwise similar characteristics could get wildly different treatments depending on which doctor they saw and which hospital they were at. EBM came about as a way to standardize treatment based on what worked best for the most patients in large clinical trials. There are treatment guidelines for every disease that set up an algorithm. The doctor just has to plug certain features of your disease into the algorithm and it spits out the treatment you get. This is what the insurance company will cover and is what the doctor needs to do to avoid being sued. If genetic tests are not part of the algorithm, you don't get any genetic tests; they cost money, and there's nothing they can do with the results.
@val64 I saw on another forum discussion thread that there is a free genetic test available-I just sent in my specimen and hope to hear in 3-4 weeks from now. They will check for about 30 different cancer mutations. Then I can shuttle the results to my doctor. Here's the website- https://www.prostatecancerpromise.org/
As far as epigenetic codes and ways to impact them, I know of a few things relating to this topic: 1-the epigenetic code rides on the DNA and can either shut off certain genes from expressing themselves or promote genes to turn on or get active. (e.g., with regards to cigarette smoking, the researchers found the the elements in the smoke turn off our defense system and allow cancer to activate) 2-the epigenetic code is like having MS Operating system application riding on our computer, and gives instructions to the main computer as to how to operate.
@val64 I saw on another forum discussion thread that there is a free genetic test available-I just sent in my specimen and hope to hear in 3-4 weeks from now. They will check for about 30 different cancer mutations. Then I can shuttle the results to my doctor. Here's the website- https://www.prostatecancerpromise.org/
As far as epigenetic codes and ways to impact them, I know of a few things relating to this topic: 1-the epigenetic code rides on the DNA and can either shut off certain genes from expressing themselves or promote genes to turn on or get active. (e.g., with regards to cigarette smoking, the researchers found the the elements in the smoke turn off our defense system and allow cancer to activate) 2-the epigenetic code is like having MS Operating system application riding on our computer, and gives instructions to the main computer as to how to operate.
@drcopp thanks! I also took advantage of this offer. It was focused on “germline genetic mutations (inherited genes)” and associated treatments. It was useful information that everyone should have but I’m still trying to understand the types of mutations and changes of the cancer cells (somatic). The available blood biopsies. Monitoring PSA is valuable but not conclusive. Some places are still advocates of a blindfolded ADT treatment instead of trying to understand and go after the cancer cells that you actually have (as opposed to a statistical survey (or algorithm)).
It seems important to be able to also track efficacy of treatments (along with appropriate scans)
@drcopp thanks! I also took advantage of this offer. It was focused on “germline genetic mutations (inherited genes)” and associated treatments. It was useful information that everyone should have but I’m still trying to understand the types of mutations and changes of the cancer cells (somatic). The available blood biopsies. Monitoring PSA is valuable but not conclusive. Some places are still advocates of a blindfolded ADT treatment instead of trying to understand and go after the cancer cells that you actually have (as opposed to a statistical survey (or algorithm)).
It seems important to be able to also track efficacy of treatments (along with appropriate scans)
@zmarkv Thank you! I am just at the beginning of this process and will send the results to my Dr. to see what he thinks. He said that the importance of PSA is #3 in order, with biopsy and MRI ranking as #1 and 2, respectively. I'm heading into the fusion biopsy in early Feb., having had an MRI already, with which the Dr. will line up an ultrasound to the MRI image.
@val64 I saw on another forum discussion thread that there is a free genetic test available-I just sent in my specimen and hope to hear in 3-4 weeks from now. They will check for about 30 different cancer mutations. Then I can shuttle the results to my doctor. Here's the website- https://www.prostatecancerpromise.org/
As far as epigenetic codes and ways to impact them, I know of a few things relating to this topic: 1-the epigenetic code rides on the DNA and can either shut off certain genes from expressing themselves or promote genes to turn on or get active. (e.g., with regards to cigarette smoking, the researchers found the the elements in the smoke turn off our defense system and allow cancer to activate) 2-the epigenetic code is like having MS Operating system application riding on our computer, and gives instructions to the main computer as to how to operate.
@drcopp I just wish there was a way to do it anonymously. Free is never free. They use your data to make a profit somehow. I don't want my DNA with my name attached to it for someone to exploit.
Am I paranoid, maybe but so many people get exploited and I don't want to be one of them.
If I could get a test kit over the counter someplace and send it in and referenced by the number on the kit, maybe I'd do it.
Amen to that, but at least I think that I'm contributing to their data set. 23NMe did genetic testing when I first joined, I sent off my data to another company called Prometheus and they read my genes. I didn't see much in terms of prostate CA or other CA, as it was not specific enough, I don't think that at time several years ago that they had the exact matches for the cancer genes.
@surftohealth88 I was thinking about you’re reply (that I appreciated) and wondered if it would make sense for you to request the specific information about the types of cancer cell mutations that they discovered. I’m personally no longer comfortable trusting medical advice that I can’t understand, research and ask informed questions about options. The good doctors are eager to educate (why I’m going to Mayo). I’m sure others are also good but too many, unfortunately, just paint by the numbers. As a retired chemical engineer who was focused on measurement, both qualitative and quantitative, and the associated pipeline flow issues; I’m appalled at how many doctors fail to treat you individually, based on All discoverable Facts, not just broad statistics (assumptions). (Sorry- soapbox)
Yes - I agree with your thought process and with expecting more from doctors (you must be a perfectionist as I am ), but in this case I think that they really still do not know what all of those mutations mean or how they effect or not effect treatment choices.
So far, I think , they only know about 2 (or maybe 3) of them for sure , like BRCA2 - it responds to PARP therapy amazingly well and now patients with that mutation can have more targeted and more successful therapy.
The 3 somatic mutations that my husband had perhaps make no difference in treatment plan OR they do not know if they do or not (I suspect that the later is the case lol) so question was just elegantly brushed off ; ). Also, those mutations were found in cells from his removed prostate. Not all cells in a prostate have those mutations.
Now - if patient ever has a BCR - there is no way to know what cells escaped and what mutations are now in THOSE cells unless a new tumor is big enough to perform a biopsy, I guess. (??!!!) Maybe they just assume that if a patient had PTEN in pathology specimen that PTEN must be in an offshoot too ? It would be logical BUT nature does not always follow laws of logic. *hmmm
**PTEN, **RB1, and TP53 (somatic mutations) are making patient less responsive to Pluvicto treatment, for example.
So, science in this area is still in an infancy stage but is growing VERY fast and in near future will offer more help and more successful and targeted therapies. (*fingers crossed)
Yes - I agree with your thought process and with expecting more from doctors (you must be a perfectionist as I am ), but in this case I think that they really still do not know what all of those mutations mean or how they effect or not effect treatment choices.
So far, I think , they only know about 2 (or maybe 3) of them for sure , like BRCA2 - it responds to PARP therapy amazingly well and now patients with that mutation can have more targeted and more successful therapy.
The 3 somatic mutations that my husband had perhaps make no difference in treatment plan OR they do not know if they do or not (I suspect that the later is the case lol) so question was just elegantly brushed off ; ). Also, those mutations were found in cells from his removed prostate. Not all cells in a prostate have those mutations.
Now - if patient ever has a BCR - there is no way to know what cells escaped and what mutations are now in THOSE cells unless a new tumor is big enough to perform a biopsy, I guess. (??!!!) Maybe they just assume that if a patient had PTEN in pathology specimen that PTEN must be in an offshoot too ? It would be logical BUT nature does not always follow laws of logic. *hmmm
**PTEN, **RB1, and TP53 (somatic mutations) are making patient less responsive to Pluvicto treatment, for example.
So, science in this area is still in an infancy stage but is growing VERY fast and in near future will offer more help and more successful and targeted therapies. (*fingers crossed)
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@zmarkv I understand that Biochemistry is more complex than my field but we took pains to analyze everything we could, even trace constituents and minute changes- and our focus didn’t involve a person. This makes the actions of broad brush “doctors” inexcusable.
@zmarkv
What you and I might consider to be paint-by-numbers, one-size-fits-all treatment is called "evidence-based medicine" by the medical community, and is considered to be a good thing. In the good old days(?), doctors could make decisions about their patients' care based on their own experience and their knowledge of the patient. This meant that patients with the same disease and otherwise similar characteristics could get wildly different treatments depending on which doctor they saw and which hospital they were at. EBM came about as a way to standardize treatment based on what worked best for the most patients in large clinical trials. There are treatment guidelines for every disease that set up an algorithm. The doctor just has to plug certain features of your disease into the algorithm and it spits out the treatment you get. This is what the insurance company will cover and is what the doctor needs to do to avoid being sued. If genetic tests are not part of the algorithm, you don't get any genetic tests; they cost money, and there's nothing they can do with the results.
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Helpful -
Hug
1 ReactionThanks and I agree in general but there are some doctors that go the extra mile and some that don’t. Mayo, for example, educates their patients in ways to appeal to the insurance companies for procedures initially denied. Other places just take the easy road. Some genetic tests are free and others are not cost prohibitive. The paint by number approach is apparent by how they handle stage 4. Too many put you on ADT and give up any hope of a cure, basically “sorry, good luck”. Not all places and doctors are slaves to the algorithms. Some care, have a brain and offer sound advice based on your particulars,
-
Like -
Helpful -
Hug
1 Reaction@val64 I saw on another forum discussion thread that there is a free genetic test available-I just sent in my specimen and hope to hear in 3-4 weeks from now. They will check for about 30 different cancer mutations. Then I can shuttle the results to my doctor. Here's the website-
https://www.prostatecancerpromise.org/
As far as epigenetic codes and ways to impact them, I know of a few things relating to this topic: 1-the epigenetic code rides on the DNA and can either shut off certain genes from expressing themselves or promote genes to turn on or get active. (e.g., with regards to cigarette smoking, the researchers found the the elements in the smoke turn off our defense system and allow cancer to activate) 2-the epigenetic code is like having MS Operating system application riding on our computer, and gives instructions to the main computer as to how to operate.
-
Like -
Helpful -
Hug
1 Reaction@drcopp thanks! I also took advantage of this offer. It was focused on “germline genetic mutations (inherited genes)” and associated treatments. It was useful information that everyone should have but I’m still trying to understand the types of mutations and changes of the cancer cells (somatic). The available blood biopsies. Monitoring PSA is valuable but not conclusive. Some places are still advocates of a blindfolded ADT treatment instead of trying to understand and go after the cancer cells that you actually have (as opposed to a statistical survey (or algorithm)).
It seems important to be able to also track efficacy of treatments (along with appropriate scans)
@zmarkv Thank you! I am just at the beginning of this process and will send the results to my Dr. to see what he thinks. He said that the importance of PSA is #3 in order, with biopsy and MRI ranking as #1 and 2, respectively. I'm heading into the fusion biopsy in early Feb., having had an MRI already, with which the Dr. will line up an ultrasound to the MRI image.
-
Like -
Helpful -
Hug
1 Reaction@drcopp I just wish there was a way to do it anonymously. Free is never free. They use your data to make a profit somehow. I don't want my DNA with my name attached to it for someone to exploit.
Am I paranoid, maybe but so many people get exploited and I don't want to be one of them.
If I could get a test kit over the counter someplace and send it in and referenced by the number on the kit, maybe I'd do it.
-
Like -
Helpful -
Hug
1 ReactionAmen to that, but at least I think that I'm contributing to their data set. 23NMe did genetic testing when I first joined, I sent off my data to another company called Prometheus and they read my genes. I didn't see much in terms of prostate CA or other CA, as it was not specific enough, I don't think that at time several years ago that they had the exact matches for the cancer genes.
@zmarkv
Yes - I agree with your thought process and with expecting more from doctors (you must be a perfectionist as I am ), but in this case I think that they really still do not know what all of those mutations mean or how they effect or not effect treatment choices.
So far, I think , they only know about 2 (or maybe 3) of them for sure , like BRCA2 - it responds to PARP therapy amazingly well and now patients with that mutation can have more targeted and more successful therapy.
The 3 somatic mutations that my husband had perhaps make no difference in treatment plan OR they do not know if they do or not (I suspect that the later is the case lol) so question was just elegantly brushed off ; ). Also, those mutations were found in cells from his removed prostate. Not all cells in a prostate have those mutations.
Now - if patient ever has a BCR - there is no way to know what cells escaped and what mutations are now in THOSE cells unless a new tumor is big enough to perform a biopsy, I guess. (??!!!) Maybe they just assume that if a patient had PTEN in pathology specimen that PTEN must be in an offshoot too ? It would be logical BUT nature does not always follow laws of logic. *hmmm
**PTEN, **RB1, and TP53 (somatic mutations) are making patient less responsive to Pluvicto treatment, for example.
So, science in this area is still in an infancy stage but is growing VERY fast and in near future will offer more help and more successful and targeted therapies. (*fingers crossed)
-
Like -
Helpful -
Hug
1 Reaction@surftohealth88 it’s my understanding, limited as it is, the a blood biopsy is available to identify circulating cancer cells. These people speak of interesting tests that are available and claim to be covered by Medicare: https://www.guardantcomplete.com/hcp/solutions/guardant-reveal/