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Posted 7/10/2019 12:15 AM (GMT 0)
My sister was diagnosed with an ovarian cyst, and to help her decide how to deal with this she had genetic testing, and her counselor, and now people in my family, are also pushing me to have testing.

I'm trying to figure what value there would be in my doing this. I know if you're shown to be genetically predisposed to prostate cancer, as my test will show, you are also going to be genetically predisposed to some other cancers. But what is actionable from this? Frequent screening for the other cancers I might be shown to be be predisposed to develop?

Can anyone who has had this testing advise?

Thanks,
Posted 7/10/2019 12:45 AM (GMT 0)
What do your doctors say?

You are on a great track dealing with your prostate cancer. Do you have significant risk factors that would increase your risk to other cancers? Such as smoking, high alcohol use, certain drugs, obesity, and other environmental factors? Personally, I do not appreciate people pushing me. What is the counselor’s bona fides regarding prostate cancer and genetic testing? They can show evidence of their expertise and refer you to others they have been successful with. Otherwise, I would be suspect.

Go talk to your docs and see what they say.
Posted 7/10/2019 1:21 AM (GMT 0)
I largely agree with the above post.
What you might learn (at considerable expense) could be useful if further treatment is needed at a later time. For instance, certain drugs might be useful, or NOT, if you had a mutation in one or more of the BRCA genes. But since you are doing so well, testing right now seems premature (and a waste of resources).

PS: Please be aware that one can test for germ-line mutations and for mutations of the prostate cells themselves. The latter tests requires tissue (for instance from a biopsy).
Posted 7/10/2019 2:05 AM (GMT 0)
Haven't discussed with docs yet. Have my annual next month and will do so then.

All the risk factors I can control are good.

Pretty much a given that there are BRCA and/or other gene mutations with my family history. And mutations are linked to breast cancer (men can get it - I know a guy who died of it). So would I get checked annually for it?

And BRCA mutations are linked to Pancreatic Cancer - which is pretty bad. But would I even want to be checking for this and find out sooner than I would've otherwise that I have a low survival cancer that I don't know can be effectively treated even with early detection?

Not thinking I really want to do this, but my wife/sister/mom are already on me about this.
Posted 7/10/2019 2:31 AM (GMT 0)
WO - Just completed genetic counseling and testing since my 92 year old Dad has had PCa for 17 years and I have a younger brother and two sons. My wife had breast cancer also. My Uro agreed so he referred me to group that does that which helps with insurance coverage, Medicare in my case.

It was not for me so much as it was for them to see if there is anything that I could find out that might help all of us men in my family. The results were negative in my case which everyone says is good news but I think all of us are searching for the cause/blame for our PCa and I did not answer that question with this testing.

The purpose of the counseling is to meet with a genetic specialist and see if they agree that the data furnished shows a possible genetic thread to follow up on with the actual DNA testing. In my case, it was warranted from the family cancer history and they spent a lot of time discussing the limitation of DNA testing since science is still trying to understand the relationships of what they discover.

The actual testing looked at 21 genetic markers that appear to have some relevance to PCa. Some like BRCA, are well known while others have a rather vague association to PCa. Surprisingly, the CA company that did my testing guarantees that if insurance will not cover the testing, the patient’s cost will not exceed $250 so one less thing to worry about on the cost front.

In your case, your sister’s testing probably provided some insight to the counseling and testing and hopefully she had nothing discovered that might relate to you. If she did, then it makes sense. If you have brothers and sons like I do, it may make some sense for the greater good. I like to collect information on my nasty disease so it seemed like a good idea to me. Also did the Decipher testing on my removed prostate trying to get data for future decisions to be made.
Posted 7/10/2019 12:43 PM (GMT 0)
Thanks, Mumbo.

Helpful information.

Mumbo said...
WO - Just completed genetic counseling and testing since my 92 year old Dad has had PCa for 17 years and I have a younger brother and two sons. My wife had breast cancer also. My Uro agreed so he referred me to group that does that which helps with insurance coverage, Medicare in my case.

It was not for me so much as it was for them to see if there is anything that I could find out that might help all of us men in my family. The results were negative in my case which everyone says is good news but I think all of us are searching for the cause/blame for our PCa and I did not answer that question with this testing.

The purpose of the counseling is to meet with a genetic specialist and see if they agree that the data furnished shows a possible genetic thread to follow up on with the actual DNA testing. In my case, it was warranted from the family cancer history and they spent a lot of time discussing the limitation of DNA testing since science is still trying to understand the relationships of what they discover.

The actual testing looked at 21 genetic markers that appear to have some relevance to PCa. Some like BRCA, are well known while others have a rather vague association to PCa. Surprisingly, the CA company that did my testing guarantees that if insurance will not cover the testing, the patient’s cost will not exceed $250 so one less thing to worry about on the cost front.

In your case, your sister’s testing probably provided some insight to the counseling and testing and hopefully she had nothing discovered that might relate to you. If she did, then it makes sense. If you have brothers and sons like I do, it may make some sense for the greater good. I like to collect information on my nasty disease so it seemed like a good idea to me. Also did the Decipher testing on my removed prostate trying to get data for future decisions to be made.

Posted 7/10/2019 5:37 PM (GMT 0)
WO - I thought I would provide you an excerpt from my report results which may give you some idea of the warnings they give on the limitations of the testing. Hope it helps you a little.

Report said...
Mumbo's hereditary cancer panel was negative. No germline mutations were detected in BRCA1, BRCA2, or the other genes tested. This result did not identify an explanation for Mumbo's personal and family history of cancer. This normal genetic test result reduces the likelihood that Mumbo has an inherited susceptibility to cancer. However, this result does not rule out the possibility. Our current genetic testing does not have a 100% detection rate, and therefore, it is possible that a mutation exists in one of the genes analyzed that cannot be identified by current testing methodologies. Furthermore, it is possible that a mutation in a cancer susceptibility gene that has not yet been discovered contributed to Mumbo's personal and/or family history of cancer. No further germline testing is recommended at this time. While this genetic testing was comprehensive for our current knowledge base, testing could be reconsidered in the future when broader testing options will likely become available.

Posted 7/10/2019 6:22 PM (GMT 0)

Works Out said...
My sister was diagnosed with an ovarian cyst, and to help her decide how to deal with this she had genetic testing...

Did the genetic test results alter in any way her treatment plan?

I'm only asking to enhance and grow anecdotal experiences of others on whether there is benefit to testing or not. Generally, people I've heard from (for example, my sister also had genetic testing) say that the results are not actionable.


As an aside (and perhaps has an example), your personal population risk for having PC is about 60% likelihood, completely irrespective of your family history, and due solely to the fact that you are over 60, and you are male. If you are also black, it's higher.



Mumbo, I want some of whatever genes your dad has...having lived more than a dozen years beyond the average life expectancy. That's some good genes!

Post Edited (Blackjack) : 7/10/2019 1:03:57 PM (GMT-6)

Posted 7/10/2019 8:05 PM (GMT 0)
BJ - Did you want the artificial knees, bypass surgery, pacemaker, and inability to play piano anymore also? My Dad is still pretty sharp which is the most important thing and every time the doctors tell him he will live past 95, he asks how do they know he wants to live that long? I think his attitude has changed a little since passing 90 and he probably has had more procedures than most people to get his old age. I hope I do better on the other issues but those same genes and family upbringing environment tends to affect all of us over the long run.
Posted 7/10/2019 8:16 PM (GMT 0)
Already got some of that stuff...but your point is well taken. Quality of life weighs heavily. I guess I was pointing out the irony that at age 92, and seventeen years after PC diagnosis, genetic testing for PC might not be so meaningful...
Posted 7/10/2019 9:51 PM (GMT 0)
True, but I have a worse PCa case much earlier in life than him and a Mom who died of cancer so it gets you thinking. The fact that there are or may be family or genetic ties to the various cancers is worth exploring. However, DNA testing and meaningful health record analysis are in their infancy and no telling what science will be able to determine some day. I think many of us are hoping there is a cause and a mystery drug or treatment will be developed that can zap the cause and actually cure the beast before you get it. Nice to dream when not waiting for the next PSA test.
Posted 7/10/2019 9:58 PM (GMT 0)
Gotcha
Posted 7/11/2019 2:37 AM (GMT 0)
Actually, did not alter her plans. She would be treating the same way if she had not been tested/evaluated.

Is that right - 60% risk of PC irrespective of family history for over 60 year old guys? Didn't realize it was that high. And if you know your dad had it from a young age think what that does to the probability.

My paternal great grandad I'm told lived to 97. My grandad to 91. My dad to 65. Not trending the right way, but I am now past my dad's age.



Blackjack said...

Works Out said...
My sister was diagnosed with an ovarian cyst, and to help her decide how to deal with this she had genetic testing...

Did the genetic test results alter in any way her treatment plan?

I'm only asking to enhance and grow anecdotal experiences of others on whether there is benefit to testing or not. Generally, people I've heard from (for example, my sister also had genetic testing) say that the results are not actionable.


As an aside (and perhaps has an example), your personal population risk for having PC is about 60% likelihood, completely irrespective of your family history, and due solely to the fact that you are over 60, and you are male. If you are also black, it's higher.



Mumbo, I want some of whatever genes your dad has...having lived more than a dozen years beyond the average life expectancy. That's some good genes!

Posted 7/11/2019 2:38 AM (GMT 0)
Wonder how many lawyers it took to come up with all those disclaimers.

Mumbo said...
WO - I thought I would provide you an excerpt from my report results which may give you some idea of the warnings they give on the limitations of the testing. Hope it helps you a little.

Report said...
Mumbo's hereditary cancer panel was negative. No germline mutations were detected in BRCA1, BRCA2, or the other genes tested. This result did not identify an explanation for Mumbo's personal and family history of cancer. This normal genetic test result reduces the likelihood that Mumbo has an inherited susceptibility to cancer. However, this result does not rule out the possibility. Our current genetic testing does not have a 100% detection rate, and therefore, it is possible that a mutation exists in one of the genes analyzed that cannot be identified by current testing methodologies. Furthermore, it is possible that a mutation in a cancer susceptibility gene that has not yet been discovered contributed to Mumbo's personal and/or family history of cancer. No further germline testing is recommended at this time. While this genetic testing was comprehensive for our current knowledge base, testing could be reconsidered in the future when broader testing options will likely become available.

Posted 7/11/2019 2:56 PM (GMT 0)

Works Out said...
Actually, did not alter her plans. She would be treating the same way if she had not been tested/evaluated.

Is that right - 60% risk of PC irrespective of family history for over 60 year old guys? Didn't realize it was that high. And if you know your dad had it from a young age think what that does to the probability.


Thanks for your feedback. As I mentioned, I've been thinking casually about the genetic testing, but have yet to find a real reason for it (for me). It seems that for me it would be an interesting novelty...but there are lots of other interesting novelties currently occupying my mindshare.


Yes, 60% at age 60 for US male population. 70% probability for 70 year olds. et cetera, et cetera. 50% for 50 year olds, but that's where the rapid ramp-up begins...far less than 40% for 40 year olds.

Keep in mind that less than 10% of prostate cancer cases are hereditary. Most are sporadic, but they do align with families...mostly because if your father was diagnosed with PC, then you are more apt to be PSA tested (and frequently PSA tested), and as the rule-of-thumb says: "the harder one looks for PC, the more likely one is to find it." Besides the likelihood of increased testing, you also tended to have similar foundation of diet (in particular) and lifestyle choices that your father had, at least for many years, and this is what causes most sporadic cancers. A lot of people (way more than 10%) like to think that they are amongst the less than 10% with hereditary cases...for the most part, they obviously aren't.

The percent probability of PC roughly equal to age came from a really interesting "autopsy study" reported by the Wayne County Medical Examiner, often called the "Wayne County Report," or the "Detroit Report." Over years, they examined the prostates of men who died accidental deaths for evidence of detectable PC. The incredibly obvious take-away is that if this incidence rate is occurring in living men, then obviously by far most men with PC never know they have it and it never bothers them in their lifetimes. This was a landmark report which help enlighten (and alarm) the public as well as the professional medical societies about prostate cancer overtreatment.

Age is, by far, the number one significant factor in the risk of prostate cancer detection. Number two is having a PSA test.

Post Edited (Blackjack) : 7/11/2019 9:11:05 AM (GMT-6)

Posted 7/11/2019 4:01 PM (GMT 0)
WO-
I've been referred to a specialty clinic to see if there is anything in clinical trials that I could participate in. Because a lot of trials currently are oriented to genetic research, I was asked to have a large panel of tests (70+, included BRACA, PCa, Melanoma, and some others) to cover what is coming down the pipe.

I had to pay for the doctor visit ($200) out of pocket, but Medicare fully covered the actual tests with some serious pre-auths and specific clinics.

As to results, there was one - just one, that was "indeterminate" aka can't tell. No positives at all. The only one that raised a flag does not apply to males - ovarian cancer. I'm real sure I won't have that.

So the test disqualified me from all of the trials happening in my area.
Posted 7/11/2019 10:31 PM (GMT 0)
WO - I trust that you do not think that 60% of men over 60 will get prostate cancer? This is where the statistics get a little messy. The percentages are many times identified as “60% of diagnosed cases are over 60 years old” which has a different meaning.

Take a look at the chart below from zerocancer.org which shows a different relationship.
https://zerocancer.org/wp-content/uploads/2016/07/900x400-edu-2017-birthtodeath-1.jpg

I am no expert in cancer stats but those people cannot even agree on the overall rate of 1 in 6 men to 1 in 9 men will develop PCa from what I have seen published. They seem to agree that around 1 in 40 men will die from it and they will be older though. The data is too imperfect to draw hard conclusions like the study blackjack referenced where all of a small group where checked after death which generates another set of data. They say if you live long enough, you will get PCa.
Posted 7/11/2019 10:49 PM (GMT 0)

Mumbo said...
WO - I trust that you do not think that 60% of men over 60 will get prostate cancer?

The numbers I'm talking about is the percentages, by age, that "have PC," not "will get (diagnosed with) PC." As I said, most (not all) men who have PC are undiagnosed.

The table you referenced, Mumbo, is for the reported incidence by age...this is only those cases that are diagnosed, and does not include those men walking around with undiagnosed PC. This is exactly what make the Wayne County report so powerful...these men all died accidental deaths.

Thanks for nudging me to clarify...I didn't realize this wasn't well understood.

Post Edited (Blackjack) : 7/11/2019 4:52:19 PM (GMT-6)

Posted 7/11/2019 11:36 PM (GMT 0)
Good points about those more apt to be tested and the harder you look for it the more likely you are to find it.

My recently diagnosed brother lives in the UK, where screening is not routine. Were it not for family history this would not have been discovered now. And maybe he would have gone on with his life and this would not have ever reared its ugly head.

Living in the US I would probably have been screened, and this discovered, even if there was no family history of it.


Blackjack said...

Works Out said...



Keep in mind that less than 10% of prostate cancer cases are hereditary. Most are sporadic, but they do align with families...mostly because if your father was diagnosed with PC, then you are more apt to be PSA tested (and frequently PSA tested), and as the rule-of-thumb says: "the harder one looks for PC, the more likely one is to find it." Besides the likelihood of increased testing, you also tended to have similar foundation of diet (in particular) and lifestyle choices that your father had, at least for many years, and this is what causes most sporadic cancers. A lot of people (way more than 10%) like to think that they are amongst the less than 10% with hereditary cases...for the most part, they obviously aren't.

The percent probability of PC roughly equal to age came from a really interesting "autopsy study" reported by the Wayne County Medical Examiner, often called the "Wayne County Report," or the "Detroit Report." Over years, they examined the prostates of men who died accidental deaths for evidence of detectable PC. The incredibly obvious take-away is that if this incidence rate is occurring in living men, then obviously by far most men with PC never know they have it and it never bothers them in their lifetimes. This was a landmark report which help enlighten (and alarm) the public as well as the professional medical societies about prostate cancer overtreatment.

Age is, by far, the number one significant factor in the risk of prostate cancer detection. Number two is having a PSA test.

Posted 7/11/2019 11:38 PM (GMT 0)
142

That sounds like good news.


142 said...
WO-
I've been referred to a specialty clinic to see if there is anything in clinical trials that I could participate in. Because a lot of trials currently are oriented to genetic research, I was asked to have a large panel of tests (70+, included BRACA, PCa, Melanoma, and some others) to cover what is coming down the pipe.

I had to pay for the doctor visit ($200) out of pocket, but Medicare fully covered the actual tests with some serious pre-auths and specific clinics.

As to results, there was one - just one, that was "indeterminate" aka can't tell. No positives at all. The only one that raised a flag does not apply to males - ovarian cancer. I'm real sure I won't have that.

So the test disqualified me from all of the trials happening in my area.

Posted 7/12/2019 12:38 AM (GMT 0)
BJ - I still submit the PCa data set flawed not matter how how you slice it. Wayne County made an attempt on a small data set so it is was it is. I have not read their study but I would like to see how they dealt with a 40% black population or other idiosyncrasies of the Detroit area.

So what is the overall PCa rate, 1 in 6 or 1 in 9 or in between? That should be the easiest number to agree upon I would think.

Now arguing about the data we don’t know or have is most difficult and hard to solve. Your clarification was helpful.
Posted 7/12/2019 1:11 AM (GMT 0)

Mumbo said...
So what is the overall PCa rate, 1 in 6 or 1 in 9 or in between? That should be the easiest number to agree upon I would think.


I dunno. I don’t really care either because neither of these are as significant or as important as the Wayne County report is. And the Wayne County report is not exact; it’s not exactly 60% for 60-year-olds, it’s about 60% for 60-year-olds. But it’s absolutely directionally correct. That’s what’s important and relevant in cases like this discussion.
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