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Stories of Hope
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The Story Behind Why I Support PCSANM Guy Dimonte, PCSANM Participant and Peer Supporter When I was diagnosed with a serious case of prostate cancer (PC) in 2009, I was unprepared emotionally and factually to make the important decisions on how to proceed. I consulted a local surgeon who recommended surgery, a radiation oncologist who recommended radiation, and a medical oncologist who recommended hormone therapy. WHAT TO DO? The doctors suggested Dr. Walsh’s seminal book (Guide to Surviving Prostate Cancer), which was informative, but it was not specific to me and it did not provide emotional support. Luckily, I was introduced to a retired surgeon who had been battling cancer for 20 years. He shared his experiences, helped me develop a medical plan for myself and provided inspiration and support for battling my cancer. I also met with a local PC survivor group. They shared their experiences with different treatments and also provided support. Both were so important to me for dealing with my newfound malady and it was blind luck to have found them. Since I was young (60 years old) and healthy otherwise, I chose to have a prostatectomy as my initial treatment with an experienced urologist. Since my PC was severe, my PSA did not become undetectable in the following months so I was given radiation to my prostate bed. This made my PSA undetectable but only for two years. Meanwhile, my surgeon friend introduced me to a urologist at the Mayo Clinic in Minnesota who treated my recurrence with PET scans to find the metastases and with various treatments. According to the tables in Dr. Walsh’s book, there was a 100% chance that I would die of PC after seven years, similar to my dad. But because of chance encounters with experienced, knowledgeable and supportive men, I was able to formulate a plan to successfully deal with my PC. It was also important to keep current on the many wonderful treatments being developed for PC and to make lifestyle changes. Along the way, I met a board member of PCSANM at a cancer retreat in Pecos who invited me to attend their Saturday meetings. WOW. The members were supportive and knowledgeable about PC and local medical capabilities. The annual meetings are also very informative. The group provides all the tools for dealing with PC that I only stumbled upon with chance encounters. That is why I give to PCSANM financially and with my time.
Never Thought This Would Happen to Me By Jonathan Brown, PCSANM Participant After I was diagnosed with prostate cancer, I was at a loss as to how to deal with this crisis. I began by telling several friends and family of my diagnosis only to hear the familiar reply, “Oh, it’s nothing to get excited about because nobody ever dies from ‘That Cancer.’ Just don’t worry about it; it’s not like it can kill you.” This, as you might expect, did nothing to help me cope with my “new future friend.” I have come to realize that people really don’t understand what I am experiencing. Probably because they have not been through it. Shortly after discussing options with my urologist, I started to research prostate cancer treatment options on the internet. I found copious articles related to this disease and plenty of statistics. Instead of finding comfort in all these numbers and facts, they magnified my fears and anxiety. Kind of scary stuff. Along the way, fortunately, I discovered the Prostate Cancer Support Association of New Mexico, in Albuquerque. I called and spoke with them regarding my current situation and was relieved to find that I was not alone in my fight. They invited me to attend a support group meeting. These sessions continue to be provided to our community on the first and third Saturdays every month. Inside the facility where the sharing session takes place, I was warmly greeted by three different board members and was asked what they could offer to me to help me better understand this disease. As I learned, there are many men with prostate cancer. I also learned that I was not alone in this fight after all. I had the good fortune to land in a good place with caring people who have plenty of experience and willingness to help me begin my journey forward. My “new future friends,” as I call them. I was surprised at the openness of the participants and have come to appreciate their candid humor. At one encounter, I was afforded unlimited time on the telephone with several board members who answered all of my questions thoroughly. This has allowed me to relax a little and try to take it “one day at a time,” allowing me to look hopefully towards my future. My experiences with this group have helped to prepare me for my upcoming cancer treatments in ways that I could not have received from anyone else. I am thankful to all that have helped me to realize that I am truly not alone with my prostate cancer, as I had once believed.
“EARLY DETECTION, OVERALL GOOD HEALTH, AND SOLELY CONTAINED IN THE PROSTATE CAN GIVE POSITIVE OUTCOMES” By Jerry Bowe, PCSANM Participant Those were the words my family doctor gave me after I was diagnosed with prostate cancer. It gave me a positive attitude for my journey ahead. In June 2022, my PSA (prostate specific antigen) score was 6. A year later, it was 8 and two months later, 10. So, there was concern and in late August 2023, I was referred to a urologist who recommended I have an MRI and a biopsy. In mid-September, I had the MRI result which stated that I had a tumor solely contained in the prostate and a 65% chance of being cancer. On October 4, 2023, I had a biopsy where 12 samples were extracted from my prostate. Everything went smoothly. My results were that only one sample detected a cancer tumor, and the Gleason Score was 4+3 in the unfavorable intermediate category. A follow-up appointment was made for a month later on November 7th to discuss the treatments. What am I going to do waiting a month? I contacted my family doctor and spoke with him, and he told me that early detection, overall good health, and solely contained in the prostate can give positive outcomes. I also told my neighbors, family and close friends of my diagnosis, and not to worry. So, my family doctor’s words became my mantra, to endure the next month. When speaking with friends that have had prostate cancer said having a positive attitude is the key. I only go online for definitions and explanations of acronyms. I get medical advice from my doctors since there is so much misinformation online. The game changer for me was on October 15th when my next-door neighbor gave me a health article from the Sunday ABQ Journal with the headline, “12th Annual Prostate Cancer Conference November 4” being held by the Prostate Cancer Support Association Of New Mexico (PCSANM)! But the treasure was it stated where PCSANM was located and their hours along with their two support group meetings held every month with the location and hours. It also included the PCSANM website and phone number! Wow, an opportunity to educate myself about prostate cancer! A couple of days later, I visited PCSANM, and was warmly greeted. It made me comfortable to be able to talk about my diagnosis, and I was given a wealth of information to educate me further. PCSANM promised to send me relevant videos from the Prostate Cancer Research Institute (PCRI). By the time I arrived home, I had links to five videos in my inbox. Three of them pertained to my Gleason Score diagnosis of 4+3. The videos were concise, informative and stayed on topic. I also got an appointment for the next day to meet with Dave, a PCSANM board member and support group moderator. More education! My husband and I were welcomed by Dave with a friendly smile and calm demeanor (he has a great sense of humor too!). We spoke for over an hour, and he explained what a prostate is and how it functions. Dave also talked about how prostate cancer develops with the potential to grow. He described various treatments such as radiation and hormone therapy. Dave also talked about all the advancements in the last 30 years and especially in the last 2 years with proton radiation and PSMA PET Scans. I showed him my biopsy results and he hand drew a picture of a prostate indicating where my tumor was— near my seminal vesicle. He also provided me with a 96-page Prostate Cancer Patient Guide produced by the Prostate Cancer Foundation. It’s a comprehensive resource on diagnosis, treatment, side effects and risk factors for patients and families with a history of prostate cancer. It can now be found online at www.pcf.org/guide. More education! In October, I attended two prostate cancer support group meetings. It was a welcoming, open, friendly, and caring environment. We are all dealing with prostate cancer in some phase, so we have our own brotherhood. In the first meeting, you get to tell your personal story of prostate cancer with everyone. This helps other members know specifically what you are dealing with. The members then can share their expertise about treatments and drugs that they have experienced. Some meetings have medical experts give a presentation to educate you even more. The speakers are very open to answering any questions you have. On November 4th, I attended the 12th Annual Prostate Cancer Conference with my binder full of materials. I had also created a spreadsheet of questions to ask my urologist at my upcoming appointment three days later regarding treatments. The main speakers were a urologist, a radiation oncologist, a medical oncologist and expert on biomarkers. I was able to educate myself more from their presentations. I also showed one of the speakers my spreadsheet. He thought my questions were pertinent and I should add one more regarding a cancer care team. At this point I recognized that the more you educate yourself about prostate cancer, the less anxiety and stress you have. I was now “armed and ready” to have the discussion about a treatment plan! It turned out that we were basically on the same page. I really wanted a PSMA PET Scan (only available for prostate cancer) where you are injected with radioactive fluid which is able to detect minute cancer. This way I would have a base line to know at this point, that my cancer had not spread. Fortunately, this was part of the urologist’s treatment plan. There was a minor concern of my tumor being close to the seminal vesicle. My treatment plan was a PSMA PET Scan, then three weeks later a Lupron hormone therapy shot, followed three weeks later by 28 radiation treatments and one month later, a second and final Lupron shot. The PSMA PET Scan went well with no side effects. Then I had the Lupron shot which after a couple of weeks gave me some fatigue and chest hot flashes. The most fatigue I had was towards the end of the radiation treatments where the Lupron shot, and radiation had full effect. The fatigue was a little frustrating as far as not being as productive as I wanted to be, but I figured out that if I took a nap, I was a little more energized to get a task done right away. Hey, I educated myself! The new proton radiation I had (only available for the past 2 years) was amazing. Because the radiation is so targeted, I never felt any radiation burn nor did I have any skin discoloration. The preparation for the radiation was drinking 40 ounces of fluid a couple of hours before my treatment. I chose 8 ounces of coffee and 32 ounces of water. My appointments were at 10 AM, so my routine was between 7:45 AM and 8:45 AM, drink the fluid. At 9 AM, I took a shower and at 9:30 AM, I drove to my appointment to be on time. They have a very tight schedule. When you arrive, they perform an ultrasound on your bladder to make sure it’s full so that it stays in place away from the prostate radiation. After that you can immediately urinate! If you don’t drink enough, the penalty is you drink more water and then wait an hour. That only happened to me once, and I vowed to myself that it wouldn’t happen again! One thing you can control is how you approach treatments. I told myself that I would be positive during radiation treatments. The Kaseman staff greets you with smiles and they have a great sense of humor. Every week, I brought homemade baked goods and told them some dad jokes. The radiation assistants were very caring and made you feel like family. Leaving after the last treatment was emotional, not just because I got to “ring the bell,” but it felt like leaving family. I’ll never forget them, and I think I was a unique patient for them in a positive way! Three months after radiation treatment, I had my second and last Lupron shot. I did experience some fatigue and hot flashes, but 18 days after the shot I was still able to do our 5-week Spring Europe trip including visiting family and grandsons in Italy. Three months after my final Lupron shot, I had a PSA test. I got my results, and my PSA has gone from 10 nine months ago to 0.02 which means the treatments worked! Going forward, I will have a PSA test every 3 months to monitor. I must give huge kudos to my husband who helped me maintain a positive attitude during this journey. His dishes of ice cream with blueberries shaped into two eyes and a smile were priceless! A close friend of mine who has battled cancer told me, “You controlled the cancer, you didn’t let the cancer control you!” The two big factors were educate, educate, educate and a positive attitude! “No amount of anxiety changes the future. But any amount of gratitude changes the present.”
Just Too Old to Matter By Hank Witek Cruising through retirement, not a care in the world. Results from Annual PSA tests always uninteresting and below concern thresholds. It is now 2016, and at age 70, there is a blip on the radar (PSA =1.24), but no sweat, because the “concern threshold” rises with age, at least that is what I am told by my urologist. Radar echo continues to increase over the next two years, up to PSA of 4.1 in 2018. My urologist expresses little concern because of my excellent health but suggests a biopsy to make sure. The results come back clean as a whistle; and a complementary diagnostic MRI at age 72 confirms a clean bill of health. 2019 PSA test results are at 7.22; let’s try some potent antibiotics to rule out prostatitis says my urologist; nope, that didn’t work. 2020 PSA test results are at 13.3; time for another biopsy; all samples benign for cancer; time to go home and have a good day. 2021 PSA test results are in, and we got a real significant blip on the radar, PSA=18.5. How about another friendly biopsy? All specimens are benign. How about another antibiotic prescription; that didn’t change PSA results again. It is time to go home and have “another” good day. Then I get word that my urologist is traveling to “greener” pastures out of state, along with other urologists in that medical group, and it may be a while before a new urologist is assigned to my case. While in “Never-Ever-Land”, I start attending the Prostate Cancer Support Association meetings, to hear how those with a cancer diagnostic are handling their specific findings. I learn how others have advocated for themselves in getting multiple medical opinions, and, when necessary, in getting treatment out of state. I also learn about the spectrum of treatments, both traditional and exploratory, that are being chosen by those with diagnostic certainty. I decide to switch to another medical group in Albuquerque, and finally got an appointment with a urologist in October of 2021. In my first and only office meeting with him, he suggested that because of my good health, because of my age (now 75), and because three previous biopsies and one MRI showed no signs of cancer, that I should consider doing nothing. Armed with my ”advocate for myself” armor, I replied that I would be willing to have that conversation, after one more MRI, that I would hope he would authorize. That MRI, taken in March of 2022, showed a 2 to 3 cm lesion on the anterior side of the prostate (Pi-Rads4). My PSA is now 25.5. With NM still in a urologist lean situation, I decided that my confirmation fusion biopsy would be performed at the Anschutz Medical Campus – University of Colorado Cancer Center in Aurora Colorado, by a urologist who was very skilled at getting anterior samples. The results of that biopsy were a Gleason 7 (4+3) for the anterior samples, and cancer free on all posterior samples. I received a full body nuclear medicine and CT scan 3 weeks later, and there was no evidence that the cancer had metastasized, although there was one suspicious lymph node in the abdomen. That same day, a team of cancer specialists at the University of Colorado reviewed all my results and provided me a consensus recommendation. My PSA was now near 28.0; and because it took so long to get a cancer diagnosis, I was now in the “HIGH RISK” category and would require treatment protocols that were standard for that category. To end this saga, I have just completed my radiation treatment in October 2022 at the UNM Comprehensive Cancer Center; and will continue ADT treatment for another 6 to 12 months. I suspected prostate cancer since 2018; I knew that doubling of PSA within a year was not a good sign, and that had happened several times during this 6-year discovery period. Thank God that I sought the wisdom, consul, advice of members of the PCSANM organization, even before I had a diagnosis of cancer. Thank God, that I did not follow the advice of urologists who suggested that at my age, I should just ignore those “suspect” PSA readings and move on with life. I believe, and I hope to convince you through this article, that “It Is Never Too Old to Matter!”
Do Second Opinions Matter? By Stan Mathew, PCSANM Participant In April/May of 2025, I was not feeling right. My primary care doctor wanted to get a prostate-specific antigen (PSA) blood test done on me. When my PSA number came back and it was a 10 (and previously it had always been a low number), my doctor wanted to run another PSA due to thinking the first PSA test was a false positive. A second PSA test was done. It came back with an even higher PSA number at 10.6. He immediately wrote a referral to a urologist. I went to the urologist. He told me that I needed to get a biopsy done and made an appointment. I went to the biopsy appointment and got a six-core biopsy done (with three biopsy samples being taken from each side of my prostate). The results came back. The urologist told me that I had prostate cancer: my Gleason scores were all sevens on my right side of my prostate and a seven, eight, and nine on the left side of my prostate. He told me that I needed to get a Computed Tomography abdomen and pelvis with IV contrast scan and a nuclear bone scan of my entire body. Both tests were done on June 19, 2025. My urologist told me that the prostate cancer was contained in my prostrate due to what the two tests showed him. These results decided for me that I was going to get a prostatectomy (removal of the prostate) on August 7, 2025, by my urologist. I went to my final blood test at the end of July to get current results to be given to my anesthesiologist. Then, I was hit by a bolt of lightning in the waiting room! An individual told me that he had the same doctor and that I should do my research before getting this surgery because it would change my life and I needed to really think about the treatment and all potential side effects. A friend who also had his prostatectomy (about 12 years ago and recently went through radiation therapy), suggested that I go to the Prostate Cancer Support Association of New Mexico (PCSANM). My wife and I attended the July 18, 2025, meeting. I was asked by the group to share my story being a first timer of what brought us to this meeting. I told my story and the members of PCSANM asked why I had not gotten a 12-core biopsy test, a Prostate-Specific Membrane Antigen (PSMA)-PET scan, and a Magnetic Resonance Imaging (MRI) scan. Everyone in the room said that a PSMA-PET scan was a great specific test and it would indicate if the cancer had escaped from my prostate. Attendees of the support group also suggested I seek a second opinion, just to be safe. After the PSCANM meeting, I needed time to digest the information that I had heard. I also needed to figure out what I was going to do next. On Monday, I called my insurance company and asked if I could “self-refer” myself for specific doctors and services. The representative on the phone told me that I could self-refer myself (I verified this twice with different representatives before proceeding forward). I immediately called the University of New Mexico Comprehensive Cancer Center (UNMCC) and scheduled a second opinion with the urologist. I also reached out to the New Mexico Cancer Center (NMCC) and scheduled an appointment with one of their oncologists. Lucky for me, I was able to schedule a second free opinion through my wife’s insurance. I exchanged emails with my current urologist’s staff and asked if he did the PSMA-PET scan. They said that my urologist did not do this type of test and that the cancer was contained in my prostate. They also said I would have to see one of their oncologists. They did not immediately refer me to one of their oncologists, and a red flag went up in my mind that I was not getting the whole picture about my prostate cancer. I cancelled my prostatectomy about two weeks before it was going to be done. At my first appointment with the NMCC oncologist, he immediately set up a test to get a PSMA-PET scan, and an MRI test done at their center. A few days later I got my PSMA-PET scan, and my MRI test. The following week, I received my results: the prostate cancer had escaped from my prostate and gone into two of my lymph nodes right next to my prostate. Talk about a shock and surprise upon receiving this news. I also realized that my biopsy could have been more complete. It should have been a 12-core biopsy. At this point, I realized that I did not get the two most important tests that I needed to make this crucial decision, which was the PSMA-PET scan and an MRI. What if I had gotten my prostate removed before having gotten these tests? I would have been going through a brutal recovery process with the possibility of lifelong incontinent issues and other terrible complications from this surgery that may have never been fixed or resolved. With all these issues going on, I would have been getting hormone therapy and radiation therapy. At the original facility where I was getting my prostate diagnosis there was just the “doctor” mentality. Both second opinions agreed with the NMCC that hormone therapy and radiation therapy were the correct path forward for me. At the NMCC and at PCSANM there was the “team” mentality. Imagine where I would be right now if I had stayed with the “doctor” mentality instead of moving over to the “team” mentality.