As long-time readers of this column will be aware, The “New” Prostate Cancer InfoLink has been less than enthused by some of the attitudes of the American Cancer Society (ACS) when it comes to education of physicians and patients about prostate cancer. However, praise is important when praise is due!
The ACS has just released a set of guidelines that will be useful for patients, for specialists, and for the primary care community in thinking about the long-term management of men diagnosed with and treated for prostate cancer:
- The full text of the guidelines is available on line in CA: A Cancer Journal for Physicians.
- A summary document for patients was also published in the same journal and can be downloaded if you click here.
- The guidelines have already been discussed in an article on the Medscape web site.
This is another really useful and important set of information for prostate cancer advocates and educators to be bringing to the attention of physicians and patients (and payers too, if you get the chance).
Here are some data to give you a clear idea of the size of the problem today, here in the USA:
- Nearly 2.8 million men are living in America today after a diagnosis of prostate cancer (that’s 1 in 5 of all American cancer survivors).
- Prostate cancer patients diagnosed with local or regional disease now have a 5-year survival rate of nearly 100 percent and a 15-year survival rate of 91.4 percent.
- Many prostate cancer survivors have to deal with long-term effects of treatment, including the common problems of urinary incontinence, sexual dysfunction, bowel issues, adverse psychosocial effects, and relationship effects (but see the long list in Table 1 of the original article).
- Some 20 percent of all patients “experience treatment-related regret or feelings of loss or distress”.
As the lead author of the new guidelines has pointed out:
the responsibility for care is more and more provided by primary care physicians.
In the view of The “New” Prostate Cancer InfoLink, the summary document for patients published in association with the ACS guidelines should be handed to every single newly diagnosed prostate cancer patient at diagnosis, not after treatment. They help to give patients and their families a very clear picture of what they are dealing with, and may well also help them to understand why expectant management of some type is often a better option than any form of invasive treatment.
It is also critically important for patients to keep their primary care doctor in the loop with regard to the initial decisions about treatment and early outcomes after treatment. This means that you need to insist on good communication between your specialists and your primary care doctor if you have treatment for localized disease that is treated with curative intent. The situation is clearly much more complicated for men with progressive disease after first-line treatment and for those men who are diagnosed with non-localized or evident metastatic disease.
Filed under: Diagnosis, Living with Prostate Cancer, Management, Treatment | Tagged: care. long-term, guideline, survivorship |
THE "NEW" PROSTATE CANCER INFOLINK 
LOOKS GOOD
I’ve looked at all three documents including the care guidelines in some detail. (The link for the Medscape article did not work initially, but the Sitemaster has now fixed that.)
Overall, the guidelines document is impressive. My own care for ADT and radiation under expert management is more refined and I’m convinced is better than what is in the guideline, but I believe the guideline document will go a long way toward improving care and will be a big help to primary care providers. That’s important as many patients do not have access to highly expert care. As just one example, my respected urology team did not feel comfortable with coping with my risk of decreased bone density from ADT back in early 2000, but the guidelines clearly emphasize that issue and suggest acceptable management approaches.
One comment on the Medscape site was from a urologist who pointed out that urologists are usually well positioned to provide post-treatment care. That has of course been a traditional resource for those who had access to a urologist. However, as a 15th year veteran of intermittent triple androgen deprivation therapy (ADT) and as a now savvy survivor, I have concluded that many urologists come up short in their knowledge of ADT, its side effects, and countermeasures to those side effects. They too can learn from this guidelines document.
CURIOUS ABOUT LOWER ACS FIGURE FOR 15 YEAR SURVIVAL RATE
The guideline’s statement about 15-year survival is captured by Sitemaster above: “Prostate cancer patients diagnosed with local or regional disease now have a 5-year survival rate of nearly 100 percent and a 15-year survival rate of 91.4 percent.”
As of yesterday, verified today, the ACS website was reporting 15-year survival as 94%, and that included all risk levels, presumably also men with distant mets, a group that would have relatively little impact on the statistic due to their small proportion of the total. (That site notes that men with distant metastases have a 5-year survival of 28%, but of course that is based on history that is mostly prior to the use of a number of newly approved drugs, emerging imaging advances and overall advances in prostate cancer technology.) I’m thinking that 91.4% rate should be a bit lower if men with distant mets were included.
Here’s a link to the ACS article on survival.
Can anyone explain the difference? I doubt we would be seeing an unfavorable survival impact of the USPSTF recommendation against screening — which a lot of us anticipate — this quickly. Could it be that the 94% figure does not include men with distant metastasis, though that is not stated? (Indeed, the ACS table states that the figures include all stages.)
Dear Jim:
Things like 15-year survival rates for prostate cancer are epidemiological estimates based on a variety of assumptions and models. None of these are “real” data, and the precise details of the assumptions and models used by cancer epidemiologists in the creation of these data are critical to the actual output. Make a small change in your assumptions or the mathematical model you use and a difference of 2.6 percent in a 15-year survival is easy to demonstrate.
As a consequence, I don’t see any really “big deal” about the distinction between 91.4 and 94 percent. The important factor here is that the relative 15-year survival for all prostate cancer patients is now somewhere between 90 and 95 percent. The really key implication of this is that any new form of treatment that is to be applied in the management of newly diagnosed patients with prostate cancer can only prove its worth once patients so-treated are followed for at least 15 years (as opposed to the historical 10 years)!
Before my own treatment for prostate cancer, patients in my primary care internal medicine practice who had signs of prostate cancer were entrusted to the specialists who, of course, knew much more than I about what would be best for these unfortunate men. However, my faith was shaken after I myself sought effective, compassionate care, and then had to deal with the many consequences of surgery, radiation, and ADT, none of which were fun, to say the least, some of which were genuine threats to my overall health, and all of which were considered inconsequential by the oncologist.
It is imperative that prostate cancer patients insist that their primary care physicians be informed about their treatment. It is equally important that primary care physicians communicate with specialists regarding their need to be informed. Considering my own experience, I am not inclined to compromise in this area. Internists and family practitioners should take seriously their responsibility to become knowledgeable about the diagnosis and treatment of prostate cancer and, especially, about the management of long term effects. I am gratified to see that the ACS seems to be endorsing that point of view.
As well as receiving the ACS guidelines, prostate cancer patients should receive the address of The “New” Prostate Cancer Infolink. This site has been of great benefit to me, personally and professionally.
Thank you for that kind comment at the end of your last post, Dr. Hanline. I am very conscious that I am not a physician, and we try very hard to tread along the fine line between offering patients sound guidance and not giving patients medical advice. I hope you would let us know any time you think we may be treading too close to the edge of that line (let alone crossing it).