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44-yr-old prostate cancer patient seeking advice, thoughts, etc.
Hello all,
I’ve just been thrown into this scary world recently. I wanted to share my story and see what advice, wisdom, anecdotes, thoughts, etc. you all might have.
The Basics:
44 years old living in Salt Lake City.
Diagnosed with prostate cancer November 26, 2024.
Fairly large tumor (1.7 x 2.1 cm) in the anterior right transition zone.
Slight bulging of the prostate margin anteriorly, indicating extra capsular abutment or extension (my nomograms indicate a 66% chance of prostate-confined disease)
Gleason 7 (3+4) = Grade Group 2
Total percentage of pattern 4: 10%
PSMA PET Scan: no sign of metastatic spread and no sign of lymph node involvement.
PSA: 4.8
Free PSA: 0.3
PSA, Percent Free: 6%
Decipher score: 0.15 (low risk)
No other genetic abnormalities found (like BRCA1, BRCA2, or other predispositions to cancer
I’m currently scheduled for surgery on March 4. However, I’m still exploring all options and seeking multiple opinions.
Background:
I’m frustrated with the journey I’ve been on. In 2019, I had an acute prostate infection. I was treated with antibiotics and the infection cleared up. However, troubling urinary symptoms remained. These were primarily weak urine stream, urgency, and other minor symptoms similar to what someone with chronic pelvic plain syndrome would experience.
My doctor referred me to a urologist. At first, he suspected the infection never went away completely. I did another round of antibiotics. My symptoms ebbed and flowed over two years. My urologist eventually began to suspect cancer because of my symptoms and my slightly elevated PSA level. I had a transperineal prostate biopsy in September 2021. EVERYTHING CAME BACK BENIGN. I was enormously relieved. Around the same time, I moved to Utah.
It took me a while to establish care with a new urologist. He believed I had lingering inflammation from prostatitis and that I should try pelvic floor physical therapy. I gave that a try, but life gets in the way and I just sort of put up with my main symptoms of weak urinary stream and urgency. I went back a year later and he had a completely different diagnosis. He said I had an enlarged prostate. My prostate is slightly enlarged for someone my age, but not overly large. It measures 35cc.
I wasn’t happy with his change in diagnoses, so I found another urologist at the University of Utah. He and and a colleague first wondered if I was having trouble with mast cells and auto immune issues. I seemed to fit the profile of a man with chronic non-bacterial prostatitis. We tried some medications and tests. Finally, in October of 2024, I got a mpMRI 3T. It showed a PI-RADS 5 lesion. A month later, I received an MRI-guided targeted biopsy. That’s when cancer was confirmed.
I should note, there are also extensive calcifications and evidence of chronic prostatitis elsewhere in the gland. I have both cancer and prostatitis. It’s unclear if it’s the cancer or the prostatitis (or both) causing my main urinary issues like weak stream.
It’s been a whirlwind. From being investigated for possible cancer and being found clean…to suddenly having a fairly large tumor three years later.
I do have a family history. My dad, and two of his brothers, had it. Two were diagnosed in their 70s. One was diagnosed in his 50s. All are still alive and it doesn’t seem prostate cancer will be what kills them.
I’m more calm now than I was when my MRI first indicated a high chance of cancer. My PSMA PET scan calmed me a lot. But I’m still worried about the potential for slight extraprostatic spread, as indicated by the bulge.
I do trust the team at Huntsman Cancer Institute, where I’m being treated. My surgeon is Dr. Christopher Dechet. He is, understandably, wanting me to do surgery. I met with the radiology urologic oncologists as well. They also think surgery is a better option for me. They cite my age, and the fact that I already have urinary issues, as a reason to avoid radiation. They believe I could be severely affected by radiology-linked urinary problems if I went that route.
I traveled to the Mayo Clinic last week for some other opinions. A surgeon gave me some assurances about my Utah surgeon saying, “if you do surgery, you don’t need me and you don’t need to come here. I know your Utah surgeon. We studied together and he’s very gifted. You’re in good hands.”
I also met with a focal therapy specialist. He said the only focal therapy he would recommend for me is cryotherapy. He said some of the reviews for cryotherapy are mixed and he wanted to make sure I understood that they do MRI-guided cryotherapy at Mayo, which is much, much better than other kinds. However, he also said I’m not an “ideal” candidate. But I’m not a “bad” one either. He just thinks there’s more of a chance of prostate cancer becoming a “chronic condition” for me given my age. He is presenting my case to the Mayo tumor board to see what colleagues say. I haven’t heard back yet.
I’m also traveling to UCLA Health in early February for additional opinions.
Like nearly all guys, I want the best chance of curing the cancer and preserving sexual function. I like my sex life. It’s robust. The possibilities fill me with dread.
That’s my story. Feel free to ask questions or let me know what you think.
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No need to apologize. There is a lot of info in these posts and easy to miss some things. As long as men learn something and have more options/questions to ask their doctors!
@russm . You fail to mention the International fast growing- NanoKnife procedure . A little slower in the USA . HIFU like a Transrectal Biopsy is extremely to get at in certain areas of the prostate . Transperineal Biopsies solved that issue .
Persoally I am currently considering NanoKnife , TULSA-PRO or Monotherapy SBRT ( 5 Treatments ) I have an upcoming consultation with Dr. Laurence Klotz . a Urologist at, and a former member of the TULSA -PRO research team at the Sunnybrook Hospital in Toronto , where it was invented by Dr. Chopra
I personally know several associates who had the NanoKnife procedure in Canada and Germany -- All with good success . Numerous Urologists will not recommend proven Focal Therapy Treatments as they are still considered experimental in the eyes of the Medical Field .ie No 15 - 20 year history of long term effects . Not FDA Approved in the USA or Canada etc .
NanoKnife in Canada costs $ 25K Can Dollars TULSA-PRO $ 30K Can Dollars .
$ 1 USD = $ 1.43 CAD .
Hey clandeboye, I finally looked up the Nanoknife . It looks very promising; however, it seems that it might only be feasible if you have a small to medium sized discrete tumor, well defined.
The needle wands”bracket” the tumor and zap it with electrical impulses to destroy the tumor. The only thing that gives me pause is the total unpredictability of this disease - cancer cells may be growing in other parts of the gland not visible on MRI or too small to show on PSMA.
I guess you ‘d be married to constant PSA’s and scans like the rest of us since even if the entire gland is destroyed or removed there’s no guarantee.
From everything I’ve read and heard here on the Forum Tulsa Pro might be the better bet, but that’s just my opinion.
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2 Reactions@heavyphil . Thanks for your response . NanoKnife is for numerous sizes of tumor sizes . Google : IS NanoKnife for small tumors only . Also a private clinic in Germany , one of many , who has performed several thousand successful procedures . VITUS CLINIC in Offenbach . One of my friends went there in 2022 not knowing it was available at several locations in Toronto , for example , North Toronto Cancer Center , Australia is big on NanoKnife . I contacted Dixon Woon to discuss their experience . London's Dr, Emberton at Kings Gollege was another I consulted with . It's big worldwide - more popular than TULSA-PRO . Regarding the latter I consulted at length , via a telephone call , with the inventor Dr. Chopra , who now practiicess in the USA and had invented numerous new leading edge medical treatments -- obtained the Patent and formed more successful companies as he did with TULSA-PRO .
As noted on my previous thread . I am looking forward to my in person consultation with Dr. Klotz his fellow research team member at Sunnybrook Hospital in Toronto . He is currently conducting a " multi-location "TULSA- PRO TRIAL one of which is at Sunnybrook . I do not qualify - age related . I will be 85 in April .
I found it strange thhat Dr. Patrick Walsh's 5th Edition book , published in 2023 , Guide to Surviving Prostate Cancer , made no mention of this latest worldwide uused Focal Treatment -- "WAS IT PERHAPS BECAUSE IT WAS INVENTED IN CANADA " ? --- NEVER TO BECOME THE 51st STATE . Ha. Ha.
Keep Well & Happy New Year .
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5 Reactionsi’m 65 had 7 gleason score decided on surgery had it removed in november 24 . have some bladder issues not having to wear pads or diapers. sexual functions was back after 4 weeks get a erection naturally but sometimes use a pump .very pleased with my outcome consider myself very blessed to have great dr that was able to save a lot of nerves
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4 ReactionsI too traveled to UCLA to see Dr Marks team in the fall of '21 after my 3+4 diagnosis and again in January of '22 before I made my final decision. After reading all of the research papers on the various procedure options, reviewing the MRIs with Marks and a few other specialists I decided my best opportunity for the ideal outcome was with RP. My decision tree came down to two key outcomes in order of priority, the best opportunity to remain on this side of the dirt with the lowest possibility for cancer recurrence and sexual health. My surgery was in March of '22 so I'm coming up on 3 years with PSAs at zero. Now to your real Q, yes I still have an active and regular sex life with zero need for ED drugs or any other support. How I reached this point involved a serious commitment to the process and surely some luck. During RP they took out the prostate and one nerve bundle. Surprisingly after the catheter was removed(8 days post op) I had zero problems gaining an erection so at 30 days post op sexual activity began. Two weeks in my erection became less frequent so I went on Trimix as the ED drugs didn't help me evidently due to my low resting rate(47-50bpm). In laymen's terms, Trimix supported the retraining of my erection so after about 5 months of periodically using it I'm now two years with zero need for any support in that area at age 61. GOOD LUCK!!!
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4 Reactions"MayoLink patient seeking thoughts",
I am almost 30 years older than you, so take my input for what it is worth...
I don't think I read that you had ever been diagnosed with BPH. I have had that for years. When I was about your age, I was diagnosed with Chronic Pelvic Pain Syndrome (Chronic Non-bacterial Prostatis). I have lived with the symptoms ever since. I tried pelvic floor dysfunction exercises to no avail. I finally decided I wanted to have the HoLEP procedure to relieve some of my urinary symptoms from my 48 cc prostate. A few of my peer group have done this with great success. Unfortunately, at that time, I was diagnosed with 4+3 Gleason grade 7 unfavorable prostate cancer. I didn't qualify for RP due to prior abdominal surgery and digestive issues. Started on 4 months Orgovyx (ADT) and 40 radiation sessions. Almost done with Orgovyx and almost half done with radiation. Much worse urinary urgency, borderline incontinence, since treatment began. Sure hope it will improve after Orgovyx and radiation are over. Urinary issues were uncomfortable before but significantly worse now. (I am told this is because radiation has swollen the prostate and has narrowed the urethra. I hope I do not require a procedure to address a urethral stricture.) Got to the point that from about 2 am to 4 am I could not urinate at all despite my body strongly telling me I needed to. Started on Tamulosin. Able to urinate now but Tamulosin brings my blood pressure below 90/60--not good, often lightheaded and feel faint. My hope for better days when the "treatment" ends is what keeps me going. I am, of course, very thankful my cancer was localized to the prostate. I can't tell much difference to the pain I used to associate with the prostatitis. If anything, I think the prostatitis symptoms might have lessened as a result of radiation deadening the tissue--if that is possible. At some future point, if the radiation seems successful, I would like to revisit doing the HoLEP, since I read that this is possible even after the prostate tissue has been radiated. Wish I could be of more help. Best of luck to you!
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2 ReactionsAs the wise man once said: I’d rather be lucky than good.
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1 ReactionFYI TULSA-PRO FDA Approvals - There have been several FDA approvals...including recent enhancements to the TULSA procedure. You may not have been referencing TULSA regarding your FDA mention. I have read very positive things about nano-knife and may have considered that if my disease had not been so widespread in my prostate. Prior to my treatment, my prostate was enlarged. It is now slightly smaller than a normal prostate. TULSA resolved the enlarged prostate problem/nighttime trips to the bathroom and appears to have taken care of my cancer too. Maybe NanoKnife might be a good option for the younger man who is exploring his options. His very low Decipher score is a real positive for him.
If the ongoing TULSA head to head trial has similar results to the very large 30 month HIFU trial (see link to the study below) released in 2024 or better results as it should due to the active MRI thermal imaging. It might be a game changer as to how localized prostate cancer is treated. Perhaps, they will look at today's methods as being barbaric. The 30 month results indicated that HIFU was not inferior to prostate surgery. In some ways it was superior to surgery...this was for localized cancer and Gleason 7's. This study looked at the rate of cancer returning after either surgery or HIFU...and it compared side effects. This study had over 3,000 patients.
I am a living example of a person who had low grade, intermediate grade and high grade prostate cancer who had TULSA PRO. At this point, my results are perfect. The statistics with Gleason 8 indicate that even with surgery my odds of having the cancer return were high. They may come back with TULSA too....time will tell. But, at least my quality of life has not changed. If needed, I can be treated again with that method or others. If I had surgery, I still would have had undergone PSA tests every 3 months or so and I am guessing that I would have been scanned from time to time. They may have suggested hormone treatment too due to the two Gleason 8's.
A urologist at a famous teaching hospital has a video on youtube discussing his experience using TULSA on 11 patients. He mentioned that "politics" that may come into play as these new approaches might impact treatment methods. Impacting one's revenue source might cause some to push against newer and less invasive methods. With the advantage of PSMA PET scans that are much more accurate than previous scans, it is now possible to determine who has "spreading" disease and who does not. This doctor mentioned that TULSA is capable of killing high grade cancer and Dr. Scholls stated the same thing at the Prostate Cancer Research Institute.
I would encourage you to watch those videos such as this one where Dr. Scholls discusses TULSA. If you have not viewed this video, I hope you find it helpful and informative.
By the way, Dr. Scholls provides an independent opinion. He is a medical oncologist without skin in the game for the procedure.
This is the study comparing HIFU to surgery -
https://www.urologytimes.com/view/study-shows-hifu-noninferior-to-prostatectomy-for-localized-prostate-cancer
These are some of the FDA approvals for TULSA -
510k Clearance for TULSA-PRO | Profound Medical
Yes, the TULSA-PRO device is FDA approved. In August 2019, the U.S. Food and Drug Administration (FDA) granted the TULSA-PRO 510(k) clearance
Profound Medical Receives U.S. FDA 510(k) Clearance for TULSA-PRO® Thermal Boost The first of the TULSA AI modules, Thermal Boost enables predictable, customized ablation at the prostate capsule
https://www.biospace.com/profound-medical-receives-u-s-fda-510-k-clearance-for-tulsa-pro-thermal-boostthe-first-of-the-tulsa-ai-modules-thermal-boost-enables-predictable-customized-ablation-at-the-prostate-capsule
Focused Ultrasound Foundation
https://www.fusfoundation.org › Blog
Aug 29, 2019 — TULSA-PRO is the first transurethral ultrasound device to earn FDA approval. It uses real-time MRI guidance ...
September 20, 2023 Profound Medical, Inc. Imen Ferchichi ...
accessdata.fda.gov
https://www.accessdata.fda.gov › cdrh_docs › pdf23
PDF
Sep 20, 2023 — The original TULSA-PRO® System was cleared under K191200. Subsequent changes to the original system were cleared under K202286 and K211858.
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2 ReactionsHi I have prostate cancer 3+4 Gleason score I'm interested in Tulsa pro as a treatment everything I have read makes it look like the least invasive process with almost no side effects my problem is I live in New Zealand if anyone can help with the potential costs involved I would be grateful 🥲
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