Epigenetic changes

Posted by zmarkv @zmarkv, Dec 17 7:23am

Who has been successful at tracking Epigenetic changes that drive prostate cancer progression.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

By successful, do you mean personally know how your DNA has allowed this to happen? There are 4 or 5 epigenetic changes that are known to be drivers of PCa, but I don’t think there is a way to tell you how or why your genes misfired.
They are able to detect these changes, just as they can with genomic testing (BRCA) but that’s about it. Hope that helps,
Phil

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Profile picture for heavyphil @heavyphil

By successful, do you mean personally know how your DNA has allowed this to happen? There are 4 or 5 epigenetic changes that are known to be drivers of PCa, but I don’t think there is a way to tell you how or why your genes misfired.
They are able to detect these changes, just as they can with genomic testing (BRCA) but that’s about it. Hope that helps,
Phil

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@heavyphil
So, are there tests that are standard parts of treatment plans?
Is there anything in particular do to, depending on what they show?
Are any such tests covered by insurance, or reasonably cheap, or even "home" tests you can do by mail?
Thanks!

REPLY
Profile picture for heavyphil @heavyphil

By successful, do you mean personally know how your DNA has allowed this to happen? There are 4 or 5 epigenetic changes that are known to be drivers of PCa, but I don’t think there is a way to tell you how or why your genes misfired.
They are able to detect these changes, just as they can with genomic testing (BRCA) but that’s about it. Hope that helps,
Phil

Jump to this post

@heavyphil I’m interested in learning what specific cancer cells are in play. As I understand, they change, explaining in part how they become castrate resistant or do not express psa that is normally tracked.

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Profile picture for carbcounter @carbcounter

@heavyphil
So, are there tests that are standard parts of treatment plans?
Is there anything in particular do to, depending on what they show?
Are any such tests covered by insurance, or reasonably cheap, or even "home" tests you can do by mail?
Thanks!

Jump to this post

@carbcounter yes, there are both somatic and genomic tests - I’ve had neither. Speak to your doctor or simply Google it.

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Profile picture for zmarkv @zmarkv

@heavyphil I’m interested in learning what specific cancer cells are in play. As I understand, they change, explaining in part how they become castrate resistant or do not express psa that is normally tracked.

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@zmarkv Honestly, I don’t understand the mechanisms are involved. There are papers on the NIH website that are deeply biochemical in nature; but they are so complicated I cannot follow them. Sorry!
Phil

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Profile picture for heavyphil @heavyphil

@carbcounter yes, there are both somatic and genomic tests - I’ve had neither. Speak to your doctor or simply Google it.

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@heavyphil thanks, I plan to and have obviously done a bit of research.
Mutations AND the rate of change of cancer cells seems to be important for making decisions regarding the best treatment options, especially for stage 4. I was hoping to hear of actual experiences and to have educated questions to ask. I’ll keep looking. Thanks.

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Profile picture for zmarkv @zmarkv

@heavyphil thanks, I plan to and have obviously done a bit of research.
Mutations AND the rate of change of cancer cells seems to be important for making decisions regarding the best treatment options, especially for stage 4. I was hoping to hear of actual experiences and to have educated questions to ask. I’ll keep looking. Thanks.

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@zmarkv You can use the ‘search’ option here on the forum. Simply enter ‘Stage 4’ and you’ll get the comments/discussions of those involved.
Phil

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Profile picture for zmarkv @zmarkv

@heavyphil thanks, I plan to and have obviously done a bit of research.
Mutations AND the rate of change of cancer cells seems to be important for making decisions regarding the best treatment options, especially for stage 4. I was hoping to hear of actual experiences and to have educated questions to ask. I’ll keep looking. Thanks.

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My husband had both tests done and it is good that you are doing this research since indeed some therapy choices can be adjusted depending of the mutations present in your cells.

Germline tests you can order for free. Here is the link for that discussion :
https://connect.mayoclinic.org/discussion/promise-registry-and-genetic-testing/
Somatic tests are usually ordered by your doctor - my husband's surgeon sent PC cells to be analyzed upon our request. My husband has 3 types of mutations on his cancer cells and none that are inherited. We did not get much information about his mutations since perhaps those mutations have no effect (as of now) for his treatment plan. He had localized cancer and so far only RP done.

You probably saw this article in your search, but just in case I will attach the link :
https://www.pcf.org/somatic-and-germline-genetic-testing-guide/wp-content/uploads/2025/10/PatientGuide-Testing-web.pdf
I wish you super successful treatment and please keep us posted since this is completely new area and new approach for PC treatment - that is why there is so little information available.

REPLY
Profile picture for surftohealth88 @surftohealth88

My husband had both tests done and it is good that you are doing this research since indeed some therapy choices can be adjusted depending of the mutations present in your cells.

Germline tests you can order for free. Here is the link for that discussion :
https://connect.mayoclinic.org/discussion/promise-registry-and-genetic-testing/
Somatic tests are usually ordered by your doctor - my husband's surgeon sent PC cells to be analyzed upon our request. My husband has 3 types of mutations on his cancer cells and none that are inherited. We did not get much information about his mutations since perhaps those mutations have no effect (as of now) for his treatment plan. He had localized cancer and so far only RP done.

You probably saw this article in your search, but just in case I will attach the link :
https://www.pcf.org/somatic-and-germline-genetic-testing-guide/wp-content/uploads/2025/10/PatientGuide-Testing-web.pdf
I wish you super successful treatment and please keep us posted since this is completely new area and new approach for PC treatment - that is why there is so little information available.

Jump to this post

@surftohealth88 very helpful information- thanks!

REPLY
Profile picture for surftohealth88 @surftohealth88

My husband had both tests done and it is good that you are doing this research since indeed some therapy choices can be adjusted depending of the mutations present in your cells.

Germline tests you can order for free. Here is the link for that discussion :
https://connect.mayoclinic.org/discussion/promise-registry-and-genetic-testing/
Somatic tests are usually ordered by your doctor - my husband's surgeon sent PC cells to be analyzed upon our request. My husband has 3 types of mutations on his cancer cells and none that are inherited. We did not get much information about his mutations since perhaps those mutations have no effect (as of now) for his treatment plan. He had localized cancer and so far only RP done.

You probably saw this article in your search, but just in case I will attach the link :
https://www.pcf.org/somatic-and-germline-genetic-testing-guide/wp-content/uploads/2025/10/PatientGuide-Testing-web.pdf
I wish you super successful treatment and please keep us posted since this is completely new area and new approach for PC treatment - that is why there is so little information available.

Jump to this post

@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)

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