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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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Sorry that you are here but will try to help as much as we can. I was 41 when I had surgery and now 53 and finished 2 years of ADT treatment after a biochemical recurrence, you can read my complete story in the first post here https://connect.mayoclinic.org/discussion/onward-with-durable-remission/
What you have done so far is quite robust and proactive so big ups for that effort. I am not savvy with the latest advancements for treatments, so many new options since my 2013 surgery (age at time of 41), however I get the sense from the current field of study that surgery for GS7 or higher for someone in their 40’s seems to be the approach that continues to provide the most options in the long run.
With the multiple of conditions that you have, it would be interesting to ask the professionals if their suggestion of method is based on trying to solve multiple conditions, curiosity is less so to counter their thinking, more so to get a sense if they are packaging a solution. Sounds you like are in good physical shape, presuming this is the case, continue to remain active and work on strength training, do groin and core exercises, aka kegels.
My surgery was very successful from a continence and erectile function point of view, the sex takes time to get back in action, but if the nerves are spared, life will return, just be patient. Make sure to have your regular check-ups afterwards.
Ultimately you need to iterate on the options and converge on what feels right for you, a delicate algorithm of the brain, heart and gut, but you will get there and suspect you will converge soon. I am always reminded from hiring people when I couldn’t decide between candidates, my mentor would tell me “you are not asking hard enough questions”. So to that extent, devise questions for the various professionals, and make sure you are comfortable with their bedside manner, ultimately you need a good personality match along with confidence in their skills (as silly as that seems).
Please let me know if this is helpful and if I can help to dig into a specific topic.
With good thoughts
You and I are almost cancer twins in this regard. Close to the same age, same Gleason, same pesky bulge. I sent you a private message, I'm here to chat if you want. I've researched extensively and ED is second to continence for me. Don't let yourself get too hung up on the downside of ED, you can always get an implant if the worst case scenario happens, focus on life. I know that's a hard pill to swallow but it's easy to get confirmation bias and think that some treatment is better because you feel or are told it will have zero side effects so you charge in. Listen to your doctors more than anyone or any site you read.
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3 ReactionsI think @retiredguy has the right idea. While I would tell someone with 3+4 that radiation was possible. In your case with a PI-RADS 5 lesion and urinary issues, the surgery route could be your best bet, especially with multiple doctors recommending it. Your decipher score is one positive, If you get the surgery, it is less likely that the cancer will come back.
Be aware that many people who have surgery find out that their Gleason score is higher after the full prostate is examined. Don’t be shocked if You find that out, I know many people, including me that it happened to.
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2 ReactionsI am past one year out from Tulsa, it is the way to go.
Here is my post on Tulsa Pro
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/
Tulsa
https://tulsaprocedure.com/find-a-tulsa-pro-center/
https://tulsaprocedure.com/
If wondering about Tulsa Pro from a science point of view, here is a basic Tulsa science overview article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9231661/
Conclusions:
“As an alternative to conventional treatments, TULSA is safe and effective for prostate tissue ablation in men with primary PCa. There is also evidence that TULSA delivers effective relief of urinary symptoms while treating PCa in a single, low-morbidity procedure. The likelihood of freedom from additional treatment or potency preservation is associated with the planned ablation fraction.”
Tulsa or HIFU - what is the difference
Tulsa Pro uses some of the same ultrasound technology for the ablation as HIFU, but they are not alike. Tulsa Pro can handle a person with a fair amount of BPH, HIFU cannot. HIFU the lesion has limited locations that it can reach so the lesion is best if it is near the rectum, as it is done that way and only reaches a limited area in the prostate. There are other limits some places put on HIFU, and some places put limits on Tulsa too. These are limits the maker of the equipment has not put on using it, as the places doing studies almost always put more limits on who they accept. So bottom line is if you go to a place that is part of a study they may not accept you for TULSA or HIFU or Vanquish, where-as a private physician might. Meaning get multiple opinions.
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1 ReactionYour bang on in your research . Keep this up brother . ll research and Dr visits go in your file and also scans . If you are 3+4 with poss cap extensions you should seriously consider your first instinct. of Surgery . I did and everything turned out right , so far . ED is not an issue after the first year for me and Urinary leaks not an issue . Many PC guys find out the Prostate is 4+3 or higher when a real biopsy is done after surgery . Get them to save your prostate fr future testing gif possible too ! I did in Canada . I am here for you brother ! just ask ! James on Vancouver Island. .
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1 ReactionFrom mayolink’s description of his cancer, I don’t think Tulsa will work for him. Calcifications impede the ultrasound. My doctor at Mayo was ready to do cryotherapy on any spots that didn’t show up in my initial MRI when I had Tulsa. Fortunately he did not have to. I am a huge proponent of Tulsa though for patients who qualify.
Well, welcome to the cancer that has no definitive answer as to what to do...
You have a lot of clinical data and have conducted a wide range of specialists.
I can relate my experience but I am a study of one, ergo, may not apply to you. I was diagnosed in January 2014, relatively young at 57. My choices were binary at that time given the state of clinical practice - surgery or brachytherapy.
I chose surgery, experienced surgeon, nerve sparing, went well, around 12 months I had recovered erectile function though not spontaneous, required manual and mental stimulation and of course, no ejaculation.
11 years later despite SRT, WPLN radiation, ADT and chemotherapy, I still have function, even while on ADT I did not lose my libido and could achieve erections and orgasms, to my wife's dismay.
Keep in mind statistics, the Bell Curve, averages, median, mean....I seem to be to the left several standard deviations!
If you have not already, read up on Penile Rehab Therapy. I have only done 5 mg daily Cialis. UCSF has one - https://urology.ucsf.edu/patient-care/adult-non-cancer/male-sexual-and-reproductive-health/erectile-dysfunction
Over the years I have noticed on this forum and others, that those with partners who are vested in a continued sex life fare better, again, I am an exception, sigh....
https://www.urotoday.com/recent-abstracts/urologic-oncology/prostate-cancer/152383-patient-reported-sexual-adaptation-following-prostate-cancer-treatment-an-analysis-of-related-variables-and-sexual-outcomes-associated-with-sexual-adaptation-styles-beyond-the-abstract.html?utm_source=newsletter_13787&utm_medium=email&utm_campaign=prostate-cancer-daily
As to what treatment to decide on, given the plethora of choices, you are trying to decide the "best" one. Will it be the "right" one, is there a "right" one? The only way to know is to treat them see. Of course you don't get a "do over!"
All of the possibilities can lead to paralysis by analysis. You likely will make your decision, after that if your PCa recurs then you will have more choices.
Try not to play the "what if" mind game. You have done due diligence in gathering your clinical data and consulting with an array of specialities.
I'll close with this...
https://www.urotoday.com/conference-highlights/suo-2024/suo-2024-prostate-cancer/156744-suo-2024-measuring-and-mitigating-decision-regret-in-the-management-of-genitourinary-cancers-honing-our-shared-decision-making-skills.html?utm_source=newsletter_13787&utm_medium=email&utm_campaign=prostate-cancer-daily
Cheers...
Kevin
You have investigated your case to the max . Yes there is TULSA PRO and NanoKnife which is growing fast worldwide , less so in the USA . I assume after your 2021 Biopsy you were delighted with your negative result and never had a 2nd or 3rd opinion of your slides , as recommended in Dr. Patrict Walsh's book " Guide to Surviving Prostate Cancer " .
Mine was negatiive with a RADS 5 . which was a conflicting pathology report . I had a 2nd Biopsy plus a 2nd and 3rd Opinion of my Gleason score which changed . Yes with Rads 5 , I have cancer .
You have more than sufficient info. to make a decision . More research will be unlikely to help , it's more likely to confuse you more . " Ask yourself -- What am I really looking for --- there is no magic bullet out there " .
Go with the majority recommendations of your medical teeam, which appears to be surgery .
Good luck .
First, I wish you the best regardless of your choice. My comments are merely to share my present results and the method I chose to combat my prostate cancer.
I had a 12 core biopsy. 5 samples positive for cancer...2 Gleason 8's, 2 Gleason 7's a 3+4 and a 4+3 and 1 Gleason 6. My Decipher score was .71. I too had a pretty good size calcification in my prostate. I was 64 years old when I was diagnosed and had treatment. I will be 67 in March. My pre-treatment PSMA PET scan indicated my cancer was confined to my prostate. The high and intermediate grade were on the left side and the low grade was on the right side. I spoke with a number of doctors who offered virtually every form of treatment. In the end, I chose TULSA PRO. I am in good shape for my age, and the radiation oncologist I spoke with was the only doctor who refused to treat me...saying that since I was young enough and in good health...I should have my prostate removed. He had not heard of TULSA PRO. After I chose that method, he asked to be updated and I have sent him every PSA Test and my MRI's and PSMA PET scan. He has been impressed with the results.
Since my treatment, I have had numerous PSA tests (every three months and they are steady). I have had three 3T MRI's and recently had a post treatment PSMA PET scan. Everything is clear...no cancer is visible on the scans and due to the stagnant PSA tests, that too looks to be a positive. I recognize that I had high grade prostate cancer and that my Decipher score indicated that my cancer had a propensity to spread. But, I still chose TULSA PRO. Due to your calcifications, you may or may not be a candidate for that procedure. Several of the doctors in Florida offer TULSA and other procedures such as cryo or HIFU all in one location. Your Decipher score is really low. I am not sure how that ties into Gleason scores...but, it might be worth exploring and maybe get a second read on that biopsy of a Gleason 7. I recognize that it would be rare for that biopsy number to be downgraded...but, I sure wish my Decipher score had been that low. With that said, all of my functions work perfectly and I do not need medication.
Because I was not a part of a trial, my doctor had some latitude during my TULSA procedure. He was able to ablate my cancer area several times. I believe in the trials only one swipe of that area is permitted. Since my procedure, algorithms in the software have been improved that provide for a "boost" over the cancer zones. It is my understanding that they have also improved methods for cooling the urethra....which should minimize post treatment strictures. In other words, the TULSA results should improve over the original trial numbers.
The doctor did mention that he would have to approach one of the nerve bundles that control one's sex functions. He did and it does not make a difference. As mentioned, I don't need any medication for anything. My prostate went from 57cc to 20cc. So, I no longer have the urge to urinate at night like I did prior to my procedure.
I recognize that I had high grade cancer and that it has a tendency to return. If it does, I have been told they can TULSA my prostate again or have other procedures if I wish. After my recent PSMA PET scan and PSA tests, my doctor mentioned we can now move on from tests every 3 months to tests ever 6 months. I was having a PSA test every three months and MRI's every six...plus the recent PSMA PET scan. Regardless of what treatment you might have, I would guess you will be under a similar protocol.
Deciding what to do is difficult. Given the information I had at the time, I would make the same choice again. I would encourage you to search out a study of over 3,000 patients recently completed in Europe. It was a head to head between HIFU (similar to TULSA) and prostate removal. The 30 month results indicated that HIFU was more effective at preventing cancer re-occurrence. Without digging it up again, I can't recall what grade groups of prostate cancer they reviewed. But, it is worth a look. It was a large scale head to head study...so, it should be accurate. A head to head is now ongoing between TULSA and prostate removal. If the results are similar, that might be a game changer.
Again, I wish you success in choosing the plan that is right for you and much happiness in the coming years.