(Part III) Some parting thoughts on 'the perineural invasion'
Also note tonight's program on BPH
By Howard Wolinsky
We’re coming to an end to PNI (perineural invasion) week here at TheActiveSurveillor.com.
Previously, in Part I, I shared the experience of Jeff Coleman, who felt like he had been diagnosed into a cheap sci-fi movie when a pathologist at Johns Hopkins told he had PNI.
Jeff, relax. PNI generally sounds scarier than is. But maintain vigilance.
Jonathan Epstein, MD, top gun prostate pathologist at Hopkins, told Jeff not to worry, that he could safely remain on Active Surveillance.
The term perineural invasion is loaded, just like “Gleason 6 cancer.”
PNI simply refers to an area around the nerves through which prostate cancer potentially can spread. It’s something you and your doctors should keep an eye on.
In Part II, Claire de la Calle, MD, a urologic oncologist fellow at Johns Hopkins, shared her study on PNI presented at the American Urological Association last month.
Now to the end of PNI week, Part III, an ACtive Surveillor from Colorado had some great questions about PNI that de la Calle answered:
What does additional surveillance look like while on active surveillance if one has evidence of Perineural Invasion? Do we get PSA tests more often, if so how often, tests for all the different types of PSA etc.
De la Calle: We believe that patients with PNI should be followed more closely as patients with PNI tend to reclassify sooner [with higher Gleason scores], but we do not have any evidence to support this. There is no consensus on best protocol for patients with PNI. The answer to this question will therefore vary by intuition and even by provider.
(Calire de la Calle, MD)
What does change the most and what tests show evidence of change from the PNI? What are we looking for in these additional tests if we have PNI?
Does it make sense to add MRI, PSMA, biopsy, (there is that dreaded word again)?
If so, again how often.
De la Calle: Again, there is no set protocol for watching AS patients with PNI. But intuitively it makes sense to watch patients with PNI closely. At Johns Hopkins, we do recommend PSA testing, MRI, and genomic classifiers can be considered as well. Surveillance biopsies are needed as well, but we of course do not know how regularly these need to happen. Most urologists will agree, however, that a confirmatory biopsy within one year of diagnosis is needed.
I realize these are tough questions with each patient's variables, but it seems some guidelines need to be addressed to lower the stress level with the AS patients with PNI.
De la Calle: Yes, we definitely need guidelines to help both patients and providers monitor prostate cancer on AS.
Active Surveillance Patients International and the AnCan Virtual Support Group for AS are teaming up for a program on BPH (benign prostate hyperplasia), an enlarged prostate, a not uncommon problem in patients on AS with intact prostates. Men who have been treated encounter similar issues,
It’s a drop-in First Wednesday meeting, tonight, June 1 at 8 p.m. EST. No registration is necessary. Attend the free program, featuring BPH guru, Mount Sinai’s Dr. Steven “DrProstate” Kaplan.
Just enter the AnCan Barniskis Room. And bring your questions .... in fact, if you already have something in mind, send them ahead of time to Joe Gallo at joeg@ancan.org.
Mark this on your calendar: Join me June 7 on Zoom at the Tri-Cities Support Group from outside Vancouver. I will nag you until you sign up. So sign up. Resistance is futile.
No registration necessary. Go to: https://bit.ly/3NGQQob
Here’s what Dale Bryant from Tri-Cities and Richelle Green from ProstateSupport Canada put together:
“Lessons Learned: My Prostate Cancer—and Yours”
JUNE 7TH, 2022 |
7:00 PM Pacific/8:00 PM Mountain/ 9:00 PM Central/10:00 PM Eastern
Go to: https://bit.ly/3NGQQob
From Dale Bryant at Tri-Cities:
The Tri-Cities Support Group's speaker will be Howard Wolinsky, a co-founder of Active Surveillance Patients International. Howard is an award-winning medical and science journalist from Chicago, who wrote for the Chicago Sun-Times. He recently started writing a newsletter: TheActiveSurveillor.com
Howard is the author or co-author of three books about medical issues.
Since he has been so willing to speak to people and write about his experience with prostate cancer, he is an ideal choice to introduce the topic of how to talk about prostate cancer to family, friends, and those with whom we come in contact. We are hoping that his talk will serve as a springboard for an interesting sharing of information on how comfortable people are to talk about their prostate cancer journey with others.