He may never need treatment – but then again, he 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 ADYLLO (indolent lesion of epithelial origin)!”. Many patients have heard assurances like these and yes, if you must have prostate cancer, Grade 1 Group is the best kind to have.
But wait: let’s not say “not Cancer,” says Johns Hopkins urologist Jonathan Epstein, MD “There are some very good reasons to keep the cancer designation for Group 1.” Epstein must know. He is the creator of the Grade Group system for classifying prostate cancer, a system that has been adopted worldwide. I recently interviewed him about it for our upcoming Fifth Edition Book.
“Under the microscope,” he explains, “grade 1 cancer has some of the same behaviors as higher-grade cancer.” Although not aggressive, it can invade nerves, come out of the prostate, and rarely invade the seminal vesicles. “Molecularly, it has many of the features associated with higher-grade cancer, and it has some features that you don’t see in benign prostate glands.”
So why do some doctors try to cover up Gleason 6 cancer? The rationale here, Epstein explains, is that “if you remove the cancer label, it could reduce unnecessary treatment of low-grade disease” and reduce 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 treatment – even though they still qualify for active surveillance,” because of stress. They just don’t want a cancer diagnosis hanging over their heads.
Another problem: many men who are diagnosed with group 1 cancer and have a prostatectomy actually turn out to have higher-grade cancer in their prostate. “It was just lost 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 that maybe we should change the name.”
Epstein worries about that If men believe they don’t have cancer, they won’t feel a strong need to get regular check-ups. “If you tell a man he doesn’t have cancer, yet you tell him you want to see him every year and do a repeat biopsy many times, he might think: “It’s not cancer, so why do I have to keep coming back? I’m fine!’And then, if he stops regular monitoring, “potentially, his cancer could progress and he’d be unaware of that.” One more thing, Epstein warns: “His excellent prognosis is treated Group 1 cancer is not the same if it is called non-cancerous and is not treated.”
Note: If you have very low risk disease (basically, just a small amount of Gleason 3+3=6 cancer), or you have low-volume, low-risk disease (a little more cancer, but still not much), your chance of dying from prostate cancer is less than 1 percent. Jeffrey Tosoian, MD, a urologist at Vanderbilt University, told me so (also in the book, the chapter on Active Surveillance). He tells his patients with very low or low risk, Gleason 6 (Grade Group 1) prostate cancer that active surveillance is the preferred treatment because: “The risk of dying from something other than metastatic cancer is 24 to 1.” If the patient yet wants to be treated (with surgery or radiation), I wonder if we did a good job with the education and counseling!” For men 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 take a brief look here at active surveillance: Many men don’t stay on active surveillance forever. Ultimately, they need therapy. Now, you may say, some of these men are not very low or low risk, but favorable intermediate risk (Grade 2 group, Gleason 3+4=7) cancer, ideally mostly Gleason pattern 3 with only a little Gleason pattern 4 disease. But some men on active surveillance who eventually need treatment I am doing have Gleason 6 disease: it is still very curable. just grow up. “About 50 to 70 percent of men selected for active surveillance will avoid treatment and its potential side effects for at least 10 years,” Tosoian says. Ideally, these men are watched carefully, and at the first sign that the cancer is growing or changing to the point where they need treatment, they undergo surgery or radiation. With secure tracking, ‘while 32 to 50 percent are treated within 10 years, delays in treatment do not appear to affect the cure rate” and it is very unlikely – although still possible – that the cancer will progress beyond the prostate or leave the area and go to a distant site. That’s why it’s so important to get regular checkups if you’re on active surveillance.
Finally, changing the name of Gleason 6 cancer may not make as much sense today, Epstein continues. “Grade 1 Group is more intuitive for patients as a lower grade cancer. With greater acceptance of active surveillance, patients understand that not all cancers are the same not everyone needs treatment right away – or ever – and that low-grade cancer can be watched carefully and safely.” The key word here is “followed”.
Additionally with Book, I have written about this story and many more about prostate cancer on the Prostate Cancer Foundation website, pcf.org. The stories I have written are in the “Understanding Prostate Cancer” and “For Patients” categories. As Patrick Walsh and I have said for years in ours books, Knowledge is power: Saving your life can start with going to the doctor and knowing the right questions to ask. I hope all men put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s and if you are of African descent or have a family history of cancer and/or prostate cancer, you should be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask.
©Janet Farrar Worthington
