Part 2: Mighty hard row for medical migrant on AS: Hours and hours on the road, miles to go

Part 2 in the "Rural Urologiy Crisis: A Mighty Hard Row." plus Dr. Antonio Westphalen's column on MRIs.

(Editor’s note: In Part 1 of this series, I described the shortage of urologists especially in rural areas. Patients seeking Active Surveillance for low-risk cancers are medical migrants who have to drive long distances to get the care they need. 60% of U.S. counties don’t have a practicing urologist, and there are guarantees if they do that the urologist supports or is knowledgeable about active surveillance. Here’s Joe Jones’story.)

By Joe L. Jones

My name is Joe Jones. I live in a rural area of southeast Kansas between two towns of about 9,000 people. I have a Coffeyville address, but Independence is only about two miles farther from my house than Coffeyville is. Coffeyville has a 47-bed hospital named Coffeyville Regional Medical Center (CRMC), the hospital in Independence, a branch of the Mercy Hospital System, closed about 10 years ago. 

(Joe L. Jones)

A clinic/emergency room site was opened in Independence a few years later by Labette Health whose main site is a hospital in Parsons KS, another town of around 9,000 around 45 minutes northeast of my house. I would rate the accessibility of care in the area as adequate in general, but to see many specialists one must drive either 45 minutes southwest to Bartlesville OK or, more often than not, one hour and 15 minutes east to Joplin MO, or an hour and 30 minutes south to Tulsa OK. The wait times for an appointment with a specialist are most often at least a month or two. 

My prostate cancer journey started over 20 years ago when my father was diagnosed with prostate cancer in his early 60’s. His PSA was in the upper teens and his Gleason score was 8.

My dad was functionally illiterate, so I became his advocate. I researched and determined that brachytherapy at the Tulsa Cancer Center was likely his best option since there was a high probability that the cancer had already breached the prostate. They followed the brachytherapy up with hormone therapy. The treatment was successful in that he lived to 82 and died from kidney failure due to diabetes and the overuse of antibiotics, not prostate cancer.

I was diagnosed with prostate cancer in December 2021 at age 63. Given my family history, I have been monitoring my PSA level since shortly after my father was diagnosed. It had slowly been creeping upward the last few years. 

When my PSA tested at 4.00 on 7/2/2021, I scheduled an appointment with a urologist in Parsons Kansas that is part the same medical group as my PCP is, Labette Health. His name is Dr. Logan Wineland. He recommended a 4K PSA test.  I had the sample drawn on 10/28/2021. Its results were PSA 4.65 with a 16% probability of having a Gleason Score greater than or equal to 7 on a biopsy. Based on those results and my family history the urologist suggested a biopsy. I had a transrectal biopsy on 12/9/2021. The pathology results were prostatic adenocarcinoma, acinar type. Gleason score 3+4, Grade group 2. Carcinoma was present in 1 out of 12 cores and involved approximately 15% of the core. Perineural invasion not identified.

When Dr. Wineland gave me the biopsy results on 12/16/2021, he told me about the Decipher genomics test. I immediately agreed that it could provide useful information on what my course of action should be. The Decipher score was .37 in the low-risk range and the report stating:  “These patients may be ideal candidates for active surveillance.” 

Dr. Wineland agreed that active surveillance could be an option for me, but also discussed the possibility of having my prostate removed. He also suggested that I meet with a radiation oncologist that he works with often at CRMC. When I met with the radiation oncologist, he was all about getting it treated, active surveillance was not in his vocabulary. I give Dr. Wineland credit for offering active surveillance as an option and not creating a sense of urgency to have surgery. 

On 12/22/2021, I had a CT with contrast performed of my abdomen and pelvis at Labette Health in Parsons, KS. There were no urgent findings or indication of lymph node involvement with my prostate cancer.

Shortly after being diagnosed, I started researching the latest advancements in prostate cancer treatment. Sometime in early 2022, I heard about AnCan and started sitting in on their active surveillance group meetings. 

When I introduced myself and told my history I was asked if I had had an MRI of my prostate yet. The answer was no. I approached Dr. Wineland about having one done, thus started a six-month battle with UnitedHealthcare to get one approved. At the time since I was younger than 65, I still had health insurance through John Deere, where I retired as an IT analyst.

I finally had the prostate MRI on 10/20/2022. The closest place to my house for getting it done was Mercy hospital in Joplin, MO. The results of the MRI were a 2.5 mL PI-RADS 3 lesion in the left posterolateral apex zone and a .82 mL PI-RADS 4 lesion in the right lateral base zone. Neither lesion had evidence of extraprostatic extension.

At one point, one of the AnCan moderators mentioned the Color/Promise study. I saw it as another valuable source of data to support or reject my decision to pursue active surveillance. Thanks, AnCan.

I had that test performed on 9/10/2022. The results were negative for any pathologic gene variants. AnCan also introduced me to transperineal prostate biopsies. It did not take me long to decide that I was not interested in having any more “transfecal biopsies” of my prostate done. 

As I started looking for an at least a semi-local provider of transperineal biopsies, that is when the issue of limited healthcare options in a rural area of the U.S. really reared its ugly head.

The Kansas University Medical Center is the go-to place in Kansas for advanced treatment options. But, no, they are still only doing transfecal biopsies. I checked the other nearby cities, Tulsa and OKC Oklahoma, also Wichita Kansas, but could not find a provider. 

Then, moderator Howard Wolinsky (editor of TheACtiveSUrveillor.com) in the AnCan meeting mentioned Dr. Matthew Allaway and the Perineologic PrecisionPoint system. I contacted Perineologic and eventually found out that the closest sites using their system were in either Jefferson City MO, 4.5 hours from my home, Little Rock AR, a little over 5 hours away, or in the Dallas/Fort Worth area, 5.5 hours away. Since I have an aunt that lives in the DFW area, I elected to go there.

Dr. Parth K. Shah with USMD Fort Worth performed my transperineal biopsy on 8/11/2023. I could have scheduled the biopsy earlier in 2023, but decided to wait until after I went on Medicare in July 2023, due to the battle I had to fight with United Health Care just to get an MRI of my prostate. The pathology results of this biopsy were Gleason 3+3, GG1. Based on guidance from AnCan, I had those samples sent to Dr. Ming Zhou at Tufts. His reading of the results was virtually identical to the pathologist in Arlington TX.

Now I had a conundrum, my first biopsy done in Parsons KS found Gleason 3+4, but the transperineal biopsy found only Gleason 3+3. Was the first finding a pathology misread? To answer that question, I also had my original biopsy samples sent to Dr. Zhou for a second reading. I was crossing my fingers that he would only see 3+3 in that sample too, but alas, Dr. Zhou also saw Gleason 3+4 in my original biopsy samples. One troubling difference between the original pathology report done in Parsons KS and Dr. Zhou’s report is that he reported HGPIN pattern on three of the slides. 

I want to thank you Howard for your interest in my story. It led me to reread the pathology report and notice Dr. Zhou’s HGPIN finding.  I had glossed over that finding after reading that he had also seen Gleason 3+4 in my original biopsy. Searching for more information on HGPIN led me to find this paper, High-grade prostatic intraepithelial neoplasia, PIN-like carcinoma, ductal carcinoma, and intraductal carcinoma of the prostate in the Modern Pathology journal, by of all people, Dr. Ming Zhou. 

My next step is to talk with Dr. Shah the urologist who did my transperineal biopsy about the following statement in the paper, “The extent of HGPIN is a strong predictor of cancer in subsequent biopsies. When HGPIN involves >1 biopsy cores or sites, National Comprehensive Cancer Network (NCCN) Guidelines for Prostate Cancer Early Detection recommends extended-pattern rebiopsy within 6 months with increased sampling of the affected site and adjacent areas.” I had planned to wait at least a year for my next biopsy, but this realization changes that calculus. I now have an appointment to discuss the timing for my next biopsy with Dr. Shah in Fort Worth on 2/8/2024 on our way back from visiting my wife’s mother in Monterrey, Mexico.

I plan to stay on active surveillance as long as my prostate will let me or until Medicare is paying for a focal treatment, such as the TULSA procedure. Being an IT guy and someone who has read science magazines, journals, and books regularly for the last forty years, online research and analysis is relatively easy for me compared to many men. But AnCan and The Active Surveillor have also been very valuable sources of information.

Joe Jones, 65, lives in Coffeyville, Kansas, on 30 acres of timberland. He has one daughter from his first marriage and three granddaughters. His second wife is named Laura. She is from Monterrey, Mexico. They just celebrated their 13^th anniversary. IJones worked for John Deere as an IT analyst and retired with 37 years of service.

Shortly after retiring, he volunteered to manage the USDA commodities distribution in Independence, Kansas. They had been managing the client data and reporting manually so Jones created a Microsoft Access database for the process. That database grew into one that four food pantries in his area. “I love doing development work, so that has been my main hobby since I retired,” Jones said. “I am also an avid reader, mainly about science. I also love to listen to many different genres of music, with Blues being my favorite.”

(Part 3: Another medical migrant tells his story.)

Should MRIs be part of Active Surveillance protocols?

Editor’s note: Many urologists seem to trending towards doing magnetic resonance imaging rather than rushing to biopsies when a patient’s prostate-specific antigen (PSA) blood levels are on the rise. What does our columnist and MRI maven Dr. Antonio Westphalen, of the Unioversity of Washington, think?

Send your questions about AS and urology, radiology, pathology, sexual health, lifestyle, and genomics via email to mailto:pros8canswers@gmail.com

Please keep the questions short and sweet. They should be of general interest. Sign with your real name, or just initials, tell me where you live, how long you‘ve been on AS, and how it’s going for for you. Share a whimsical signature if you’re so inclined.

Question:

Should MRI be routinely incorporated into active surveillance protocols?

Dr. Antonio Westphalen: MRI is not a perfect test, and it can still miss some cancers. Despite this, existing data supports the use of prostate MRI due to its high negative predictive value for clinically significant prostate cancer, which typically excludes patients from active surveillance. Arguments exist for utilizing MRI before initiating and during active surveillance.

However, the incorporation of prostate MRI into active surveillance protocols presents a nuanced decision-making process. The question of routine inclusion is not easily answered, given the variability in active surveillance eligibility criteria, ranging from very low-risk to favorable intermediate-risk prostate cancer. The utility of imaging is contingent upon the specific characteristics of the patients involved, as well as availability, expertise, and financial factors.

For patients considering active surveillance, a baseline MRI may be helpful to confirm the extent of the disease. For example, men with low-grade, low-volume prostate cancer are not expected to present with overtly positive MRI scans. If that happens, a repeat MRI-guided biopsy would be warranted to confirm the disease status.

For men already under active surveillance, a rising PSA often triggers a repeat biopsy to exclude disease progression. In such cases, a pre-biopsy MRI may improve the accuracy and reliability of the biopsy by identifying lesions that should be targeted.

Biopsies are also recommended at various intervals during active surveillance in the absence of a rising PSA. For patients who have not undergone a baseline MRI, performing the exam before the first per-protocol follow-up biopsy could be advantageous. Detecting visible lesions on MRI may trigger targeted biopsies, potentially identifying higher-grade disease missed on the initial systematic biopsies. A negative MRI would be reassuring. Similarly, in cases where patients had a negative baseline MRI, a repeat negative MRI would support disease stability and potentially allow a biopsy to be postponed. Identification of a new lesion, however, would be worrisome and trigger a targeted biopsy for further disease characterization.

For men with a positive baseline MRI, the decision to undergo routine imaging becomes more complex. Changes in lesion size or characteristics may indicate disease progression, but determining the adequate timing of follow-up MRI is difficult. Considering clinical factors, such as tumor grade and a strong family history, may help to identify higher-risk patients who may benefit from early follow-up MRI. Conversely, short-term imaging may be unnecessary for lower-risk patients with stable PSA, as changes in lesions would not be anticipated.

Thus, the decision to incorporate MRI into active surveillance necessitates careful consideration of individual patient characteristics and clinical factors to optimize the balance between timely detection and avoiding unnecessary costly interventions.

Please register now for my ZERO support group on AS in March

By Howard Wolinsky

For the past three years, I have run a special Active Surveillance support group for ZERO. Last year, our virtual support meeting drew 60 patients to talk about AS. By far, it was the biggest session of any at the annual ZERO Summit.

I’m hoping for a repeat performance—in fact, I’m hoping for more. Let’s have a Summit of our own on Active Surveillance.

Be there or be square: 11 a.m. Eastern on March 12, 2024.

Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZUsfuqgrjIoG9AWf7voMhzT_UjdqbQQbQPA