It may never need treatment – but then again, it might. So why do some doctors want to sugar-coat it?
“Don’t worry about Gleason 3+3=6 (Grade Group 1)! It’s harmless! We shouldn’t even call it cancer! In fact, let’s call it IDLE (indolent lesion of epithelial origin)!” Many patients have heard reassurances like these, and yes, if you have to have prostate cancer, Grade Group 1 is the best kind to have.
But wait: Let’s not call it “not cancer,” says Johns Hopkins urologic pathologist Jonathan Epstein, M.D. “There are some very good reasons to keep the cancer designation for Grade Group 1.” Epstein should know; he is the originator of the Grade Group system of prostate cancer grading, a system that has been adopted worldwide. I recently interviewed him about this for the upcoming Fifth Edition of our book.
“Under the microscope,” he explains, “Grade Group 1 cancer has some of the same behaviors as higher-grade cancer.” Even though it is not aggressive, it can still “invade nerves, go out of the prostate, and rarely, can invade the seminal vesicles. Molecularly, it has many of the hallmarks associated with higher-grade cancer, and has certain features that you do not see in benign prostate glands.”
So why do some doctors try to sugar-coat Gleason 6 cancer? The thinking here, Epstein explains, is that “if you remove the cancer label, it could reduce unnecessary treatment of low-grade disease,” and ease the uncertainty for men on active surveillance living with a cancer diagnosis. For some men, this is very stressful: “In the Johns Hopkins active surveillance program, 8 percent of men undergo definitive therapy – even though they still qualify for active surveillance,” because of anxiety. They just don’t want a cancer diagnosis hanging over their heads.
Another problem: many men who are diagnosed with Grade Group 1 cancer who have a prostatectomy actually turn out to have higher-grade cancer in their prostate. “It was just missed during the biopsy. If we had a crystal ball or could look at the prostate with some other imaging or molecular test, and see that all a patient had was pure Gleason 6, I would feel more comfortable saying we should potentially change the name.”
Epstein worries that if men believe they don’t have cancer, they won’t feel a strong need to get regular follow-up monitoring. “If you tell a man that he doesn’t have cancer, yet you’re telling him you want to see him every year and get a repeat biopsy multiple times, he may think, ‘It’s not cancer, so why do I have to keep coming back? I’m fine!’” And then, if he stops regular follow-up monitoring, “potentially, his cancer could progress and that would be missed.” One more thing, Epstein warns: “The excellent prognosis of treated Grade Group 1 cancer is not the same if it is called noncancer and is not treated.”
Note: If you have very low-risk disease (basically, just a tiny amount of Gleason 3+3=6 cancer), or you have low-volume low-risk disease (a little more cancer, but still not much), your likelihood of dying of prostate cancer is less than 1 percent. Jeffrey Tosoian, M.D., a urologist at Vanderbilt University, told me that (also for the book, the chapter on Active Surveillance). He tells his patients with very low-risk or low-risk, Gleason 6 (Grade Group 1) prostate cancer that active surveillance is the preferred treatment, because: “‘Your risk of dying from something else versus having metastatic cancer is 24 to 1.’ If the patient still wants to undergo treatment (with surgery or radiation), I question whether we did a good job of educating and counseling!” For men who are lucky enough to have slow-growing cancer, active surveillance gives the gift of time, a delay in surgery or radiation and the side effects of those treatments.
Let’s just take a brief look here at active surveillance: Many men don’t stay on active surveillance forever. Eventually, they need treatment. Now, you might say, some of these men don’t have very low- or low-risk, but favorable intermediate-risk (Grade Group 2; Gleason 3+4=7) cancer, ideally mostly Gleason pattern 3 with just a little bit of Gleason pattern 4 disease. But some men on active surveillance who end up needing treatment do have Gleason 6 disease: it’s still very curable; it just grew. “About 50 to 70 percent of men selected for active surveillance will avoid treatment and its potential side effects for at least 10 years,” says Tosoian. Ideally, these men are monitored carefully, and at the first sign that cancer is growing or changing to the point of needing treatment, they undergo surgery or radiation. With safe monitoring, “while 32 to 50 percent are treated by 10 years, the treatment delays do not seem to affect the cure rate,” and it is very unlikely – though still possible – that cancer will progress beyond the prostate or that it will leave the region and go to a distant site. This is why it’s so important to have regular check-ups if you’re on active surveillance.
Finally, changing the name of Gleason 6 cancer may not even be that meaningful today, Epstein continues. “Grade Group 1 is more intuitive to patients as lowest-grade cancer. With greater acceptance of active surveillance, patients are understanding that not all cancers are the same, that not everyone needs treatment right away – or ever – and that low-grade cancer can be followed carefully and safely.” The key word here is “followed.”
In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.
©Janet Farrar Worthington