What we need to tell sons and grandsons about their risk for prostate cancer

Over the past few years, with the increased focus on the idea of “personalized” medicine, we have become increasingly informed about and focused on correlations between genetics and genomics and risk for prostate cancer. However, …

We also need to appreciate that — even though there is, on average, a higher risk for diagnosis of prostate cancer among the sons and grandsons of men diagnosed with this disease — in most cases prostate cancer is not a hereditary disease at all.

There are several types of “familial” risk for prostate cancer that affect the likelihood that the sons and grandsons of a man diagnosed with prostate cancer will also be diagnosed with prostate cancer. They include all of the following:

  • True hereditary (germline) risk: This occurs among families with very specific genetic mutations like the BRCA1/2 genes and others. Any man in a family with known, regular, hereditary occurrence of the BRCA1/2 genes is at significant risk for breast cancer and for prostate cancer, and it would be wise for him to get genetically screened and — if he is a BRCA1/2 carrier — to initiate regular checks for risk of prostate cancer relatively early in life. However, the incidence of true hereditary prostate cancer risk appears to be relatively low and probably accounts for less than 5 percent of all forms of prostate cancer.
  • True racial/ethnic risk. This is probably associated with multiple factors that are yet to be fully understood, inclusive of genetics and diet/lifestyle, but it is still unclear exactly why men of African ethnic origin (inclusive of African Americans and Afro-Caribbeans) appear to be at higher risk for clinically significant prostate cancer than white guys and Hispanics.
  • Obesity: Obesity is also a known risk for prostate cancer, so men with prostate cancer who come from families in which obesity is common (for whatever reason) should be advising their children and grandchildren that this increases their risk for prostate cancer (and for a whole other bunch of cancers too).
  • Apparent familial risk: Apparent familial risk is a form of risk that is not (clearly or necessarily) hereditary. It is evident that this type of risk exists, but it is not clear exactly why. In general, on average, the sons and grandsons of all men who are diagnosed with prostate cancer are at higher risk for diagnosis with prostate cancer than the sons and grandsons of men who do not get a diagnosis of prostate cancer. There are all sorts of possible explanations for this, including the fact that they are more likely to get diagnosed with low-risk forms of prostate cancer because they are more likely to get screened because Dad or Grandpa told them to.

Now it is also important to appreciate that we have a real problem with “familial risk”. This problem occurs because — between about 1975 and 2000 — hundreds of thousands of men got diagnosed with and treated for low- and very low-risk forms of prostate cancer that probably should never have been treated because they weren’t clinically significant. This has real consequences, as follows:

  • Grandpa (at 69 years of age) was diagnosed with and successfully (surgically) treated for low-risk prostate cancer in 1988. He had some significant side effects and complications of that treatment (erectile dysfunction, some incontinence) but he never talked about that. His message to his sons and grandsons was very clear and straightforward: “I had prostate cancer. It could have killed me. You need to be screened.” He died of a heart condition at age 83.
  • Of course if Grandpa had been diagnosed even just 5 years ago (as opposed to 30), he would very possibly have been told that he had a form of prostate cancer that would probably never kill him; that the risk of complications from treatment was significant; and that active surveillance would allow for the possibility of appropriate, early treatment should this ever become necessary. Is this a message that is being received by his children and grandchildren. Apparently, often, no; it is not.
  • We need to be very clearly distinguishing between familial risk for clinically significant prostate cancer (that may lead to metastasis and death if untreated) and clinically insignificant prostate cancer (that is often unlikely to progress significantly over periods of 10 to 15 years or more) so that men become better at making appropriate and timely decisions about whether specific forms of treatment are really needed when the risk for complications of treatment may be higher than any risk from the diagnosis itself.

And then there is the other really important factor that often gets overlooked:

Whether or not your father or grandfather was diagnosed with prostate cancer, all men are at some significant degree of biologically random risk for diagnosis with prostate cancer as they age. The better your immune system, the less that this is likely to happen, but we all have such random biological risk from individual mutations. This is why — when your grandpa was diagnosed with low-risk prostate cancer in 1988 (at age 69) — and you get diagnosed with high-risk prostate cancer in 2018 (at age 52) your prostate cancer probably has nothing at all to do with the familial history and much more to do with random mutations over which we have little to no control.

Now we do know that men can lower their risk for all cancers if they eat a healthy diet, exercise regularly, avoid inhaling pollutants, etc. But any individual man’s risk for prostate cancer is never reduced to zero. Risk for clinically significant prostate cancer is a fact of life and increases with age. That’s just a biological reality.

The messages that we pass on to our sons and grandsons will not be accurate if they are overly simplified. We need to provide them with messages that is very specific and as accurate as we can make them. If we make them too simple, we are not necessarily acting in their best interests.

For those who are interested in a really good online lecture on genetics, genomics, prostate cancer risk, and prostate cancer management, we recommend this lecture by Dr. Leonard Gomella that you can find on the UroToday web site.

Editorial note: This commentary is based on a set of comments that your sitemaster posted to the Prostate Problems Mailing List earlier today.

4 Responses

  1. Sitemaster:

    What is the take home from your commentary? Should men with a family history of prostate cancer get screened earlier than whichever recommended norm is followed — or should they just consider the norm?

    Several recommendations, I believe those from AUA and ACS, recommend earlier screening if in a high-risk category that I believe includes family history. Should that be disregarded on the basis of factors mentioned above?

  2. Dear Rick:

    My point is more nuanced than that.

    A man who was diagnosed with aggressive high-risk prostate cancer in his later 50s and who went on to have metastatic disease within 10 years (whether he died from it or not) is by no means the same as a man who was diagnosed with low or very-low-risk prostate cancer in his late 60s or early 70s and who (based on perceptions in the late 1980s and 1990s) had invasive treatment which “cured” his prostate cancer. These two men have almost nothing in common from a clinical perspective. It is meaningless to lump them together into the catch-all of “family history”.

    Even though we have no idea whether having a father or a grandfather with one or the other of the above scenarios actually increases real risk for a son or a grandson (unless there are other clear signs of hereditary risk), I will acknowledge that the former situation, when the original patient goes on to have metastatic disease, does reasonably increase the “emotional risk” and thus suggest a value to earlier testing of the individual son or grandson.

    In the end, what this comes down to is the ability of each individual patient to assess and manage his risk — catch-all recommendations seem thoroughly unwise to me. Men need to learn that the only way to make decisions about how to “manage” their personal risk for prostate cancer is through discussion and shared decision-making with the best clinicians they can get to see. Catch-all recommendations that don’t take account of the personal and individual scenarios are probably not very helpful at all — especially since you and I might come to quite different conclusions about what we wanted to do if presented with the same set of facts.

  3. Your point is well taken … sadly the nuance is lost on the majority of the population — even myself who needed further explanation.

    Guidelines need to be simple if we expect them to be followed. Asking men/families with a history of prostate cancer to make nuanced evaluations is more likely to provide an excuse not to test.

    While I know you disagree, I believe more testing is better than less. That view is frequently echoed by many of the men I counsel — although most have experienced serious disease.

  4. Rick:

    The fact that you spend so much time dealing with men who did have serious, metastatic (or at least potentially metastatic) disease is going to inevitably affect your attitude as well as their’s.

    If I had metastatic disease and was at high risk for death from my prostate cancer (and particularly if I had specific, high-risk genetic/genomic disease characteristics), I would also be explaining this carefully to my sons and grandsons and noting that they would be wise to consider early, relevant testing. But the same isn’t true for the far higher number of men who have historically been diagnosed with low- and even (often) favorable intermediate-risk prostate cancer.

    It is particularly important that people like you (and other support group leaders and educators) tease out these distinctions for people. We can’t change the world overnight, but we can and should make sure that people understand simple truths. This is not a difficult distinction for people to grasp at all. It just hasn’t been made clearly for them.

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