We Don’t Need To Rename Low Grade Prostate Cancer: It’s Not Complicated
If it quacks like a duck ...
[Editor’s note: Tony Crispino is an old friend of mine. He is an advanced prostate cancer patient who has worked tirelessly as an advocate for patients with all types of prostate cancer, including those on active surveillance with low-risk cancer. After a paper I co-authored with several doctors was published on removing the cancer label from the Gleason 6 diagnosis, we agreed that Tony ought to rebut the paper “Low-Grade Prostate Cancer: Time to Stop Calling It Cancer” in the Journal of Clinical Oncology.]
By Tony Crispino
In reference to a recent paper posted in the Journal of Clinical Oncology suggesting around half of all cases of prostate cancer should be called a pre-cancer or be designated to another disease name. This is suggested to avoid emotional response to a prostate cancer diagnosis - Eggener et al. “Low-Grade Prostate Cancer: Time to Stop Calling It Cancer”.
It’s not often I can read such a well-thought-out document, written by a group I highly respect and feel a need to write a commentary contrary to the hypothesis. So let me start with the definition of cancer from the Google search engine:
“a disease caused by an uncontrolled division of abnormal cells in a part of the body.
A: a malignant growth or tumor resulting from the division of abnormal cells.
B: a practice or phenomenon perceived to be evil or destructive and hard to contain or eradicate.”
Is low-grade prostate cancer scientifically cancer? Well, histologically it is. [Histology is the study of the microscopic structure of the tissue.]
I think definition “A” describes it. And it seems that definition “B” applies as well to the overtreatment and overdiagnosis that occurred during an overzealous period in the history of prostate cancer treatment. What the definition doesn’t say is that if you get cancer you die from it. Nowhere in the internet definitions of cancer that I searched does it say that. But the word has tremendously misguided meanings to many men diagnosed with low-grade prostate cancer. While most men tend to deal with it well once they become educated, the following points must be understood.
Why some in practice say it shouldn’t be called cancer:
Most men feel fear and even panic following a diagnosis, and for many men, these feelings continue through their cancer experience.
The stress of this diagnosis and the ongoing tests can be overwhelming for many men.
Men are prone to making emotional decisions after hearing the “Big C” word rather than making educated decisions.
Efforts for a “shared decision” making process encouraging conservative management are certainly made difficult with a frightened patient
It will be less burden on the medical community while providing peace of mind to the patient.
As a patient advocate, support group mentor, and leader, I have been awakened at night by newly diagnosed patients looking for someone to tell them they will be ok. And sometimes, it is this low-grade patient who called. I learned a long time ago that a community support group can help a medical team with educating these guys. It’s important to lead with: “patients do best making educated decisions and not emotional decisions”.
The online boards and social media groups are buzzing right now with this topic because of this Journal of Clinical Oncology document. It’s become highly discussed already. And the patient community is largely opinionated against this change. They understand these points:
Why the term is hard to change:
It’s not a scientific change. Under the microscope, it’s still cancer.
There are no randomized clinical trials that show that this change is necessary.
Patients feel they became more “health aware” after a cancer diagnosis and that awareness leads to better compliance not just to active surveillance programs, but in other areas of overall health matters.
There is no solid evidence that it won’t make a bad situation worse. Being tested annually for a non-cancer condition that you have acquired to avoid the “Big C” is not an alternative that men feel they would enjoy any better. Or even fear any less.
It is possible some men will fall through the large cracks this may leave and die from prostate cancer when it could have been prevented.
Why the term shouldn’t change:
If given another name, we must assume men will still maintain vigilant monitoring of a disease they can’t feel and can’t see. It seems easier to rename the disease, rather than to invest in educating men sufficiently. It seems convenient to deal with patients' gripes about their anxiety by changing the terminology. And it seems somewhat paternalistic.
Prostate cancer survivorship is known for being confusing. And the history of treatment has most of the blame for that. The “PSA” and “cut and burn” era prior to the US Preventive Task Force draft in 2009 (and implemented in 2012) suggested an end to all PSA screening. This is because it led to extensive overdiagnosis and overtreatment (see cancer definition “B” above). If a biopsy was positive for any grade a radical treatment was almost always suggested. And these low-grade folks were told that their lives would be saved. That still happens today. And if we tell them it wasn’t cancer after all - this will likely add some additional emotional side effects.
Why it’s still Cancer:
If histologically low-grade prostate “disease” is name changed, what won’t change is how these men will be dealt with. Current NCCN, and AUA/ASTRO/SUO guidelines define these patients in the very-low and low-risk categories of risk management. Typically, most men diagnosed with low- and very low-grade diseases are put on active surveillance. They will still have to frequently see an oncologist. They will still have to visit cancer centers. They will still have biopsies. They may still have molecular current tests, or future ones, to see if their “non-cancer” is more prone to the need treatment even if it never is histologically found above low grade. This “illness” will still need to be in guidelines for prostate cancer treatment because not all low-grade disease can be dealt with in the same way. But even worse, 25% of all low-grade diagnoses are actually incorrect diagnoses. Lastly, there is still a huge cancer-like financial toxicity issue. (See cancer definition “b” above. I think it relates). All this, while still sweating the PSA tests, scans, and biopsies.
If it walks like a duck, and it quacks like a duck, It’s not complicated. It’s still cancer.
Tony Crispino is a long-time patient advocate in prostate cancer research. His work includes running support groups, developing treatment guidelines, working on clinical trial research for SWOG (Southwest Oncology Group), and advocating awareness, and more. He is an active member of the American Society of Clinical Oncology, the American Urological Association, the American Society of Radiation Oncologists, and many other professional organizations on cancer. He is also currently an elected panelist for the National Cancer institute’s Prostate Task Force serving his second term. He is published as an author and co-author of many papers listed in Pubmed. His charitable work includes supporting the Movember Foundation, and St. Jude’s Children’s Hospital. Tony lives in Las Vegas and has worked as a telecommunications professional for over 35 years.
Don’t miss this: AnCan is presenting a program on lifestyle choices and all grades of prostate cancer at 8-9:30 p.m. Eastern on May 31. Register at: https://bit.ly/3KkxcfC
The webinar, entitled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer," features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg, assistant professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.
Dr. Gregg will speak about his research on diet. Dr. Loeb will speak about her research on a plant-based diet, sleep, and exercise.
Did you miss the biggest program on AS to date: “Your Voice in the future of Active Surveillance” on April 22? Here’s the link: https://aspatients.org/meeting-videos/
P.S. I think I know who it was. Magwitch? Loeb?
Thanks, Bob. Your comment reminds me of "Great Expectations," one of my favorite novels by Dickens. Who was your secret benefactor? BYW, you might not be surprised that Dickens was paid by the word. I am not paid at all? Howard Wolinsky