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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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I agree with @heavyphil. It's a long road from "we saw promising results in vitro" to "here's the the exact formulation, dose, and frequency that's been proven to help humans in these specific prostate-cancer situations (but not others)". The vast majority of promising early results never make it all the way to becoming clinical treatments.
To be blunt, anyone giving you Invermectin to treat prostate cancer in 2025 may be using you as a human guinea pig to prove (or disprove) a pet theory. In 2030 or 2035, who knows? (But even if it happens, it would probably be a different dose or formulation than you'd be getting now, and might still need to be combined with other treatments to be effective.)
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3 ReactionsWho knows, maybe invermectin might be the next big thing, but we cannot wait for the next big thing, we have to accept what we have now.
A couple of analogies come to mind.
First: When that next big thing happens then it's the same as when we bought that new TV that was 70% off just a month later, we still have a great TV and we had the money to pay 100% a month ago, that doesn't make the TV worse or our decision wrong because we don't have a crystal ball to have known it would be discounted. So if invermectin comes out in a year and it's God's gift to curing prostate cancer then, yea, we missed it, but if we waited for it we might just be in far worse condition for the wait. But we can use it if the cancer comes back and kill it. We'll just simply call that an after-the-sale rebate on the TV.
Second: For decades people have sought the magic pill for weight loss. No exercise, no diet changes, just take a pill and look like an Adonis. Consider all the fad diets, the crazy snake oil pills that all promised much but delivered little. Then GLP-1 (i.e., Ozempic) came out and it was the biggest thing since the wheel and everyone jumped on the new medication that finally gave all of it to us without any effort on our part. They did this without knowing the side effects because, damn it, we waited a super long time for this. Now the side effects are widely published and we're only getting started, it turns out that while it might show promise it's at the expense of other long term health problems in many cases. In other words: it still doesn't exist and now you might be worse off for trying it.
We could all wait until a cure is found and die waiting or we can dive into the deep end with whatever medicine has to offer us today and have no regrets if 10 years from now a completely side-effect-free cure comes along because we actually lived long enough to see it, something that wouldn't have happened if we waited.
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5 ReactionsSending positive thoughts your way on your procedure tmow…When this is all behind you - and it will be - you are probably going to kick yourself for being so wound up.
Don’t get me wrong, I was like a condemned man watching my gallows being built the days before surgery, but once I was there I put on my game face and got it done.
Recovering from surgery was totally new to me so I suggest you search the board for “what to expect after surgery” and similar topics. I did not know about this forum before my procedure but it would have been an immense help in the days and weeks afterward.
I know how much I learned before embarking on ADT and salvage radiation from the great people offering advice and experience on this board. I could not have made it through without their help and support. I know you will feel the same in days to come! Be well, be strong and get it done, brother….
Phil
I'm lucky that I've had to recover from a couple of surgeries and have my go-bag ready with all the things I need to make my hospital stay comfortable, my convalescence easier and my recovery as speedy as possible. I even have super warm socks to wear in the hospital with writing on the bottom: "If you can read this then give me the good meds" just to give the nurses a laugh while I'm bombed out of my mind on morphine 😉.
And thank you for the well wishing, I'll take all I can get!
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2 ReactionsWise words.
From my PoV (with stage 4) the goal of current treatments is just to keep me alive long enough to get the next-gen treatments in a few years, and the goal of the next-gen treatments will be to keep me alive long enough to get a cure a few years after that. 🤞
It might sound over-optimistic, but consider this: the treatment I started in 2021 (and which has kept me in remission since then) wasn't released to the general public until 2018 and wasn't in the Ontario formulary until early 2022 (!!! I needed special authorization from the Ministry of Health in 2021, which my onco team obtained in a few days). Things really are changing that fast.
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3 ReactionsNailed it, North….it’s kinda like football - just get me ten more yards to give me a chance to get ten more yards…
We don’t need a “cure” - although that would be awesome; we just need some new drug or treatment that gives us five years or more while they are coming up with ways to give us five more after that.
Cancer treatment in general seems to be going in that direction and it makes the “C word” a lot less scary.
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3 ReactionsNice analogy! Yes, there's no need for a deperate hail-mary pass, as long as the runs and short throws keep us moving down the field
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4 Reactions@russm Would you please share where you had the Tulsa done? Thanks
@mayolink Hi there, sorry to hear about your diagnostic. I just got diagnosed in August this year when I was 44yrs old. Mine came from a first prostate exam, as her ein Germany where I now live, starting at this age you can get screened. My father got diagnosed last year and went with ADT and Radiation Therapy. No he seems to be cleaned.
After a routine digital exam, the urologist observed enlarged prostate and recommended a blood exam to make sure. I stepped out of the exam room and got my blood drawn (big mistake, come to find that later). My PSA came back 655!!!
The urologist called me back the next day to break the bad news to me. It did not sink in for at least another two days when i decided to redo my blood work at a private lab. The results were better, nonetheless still high 180.
That is when i began to do a lot of research and luckily came upon the Mayo Clinic Connect site.
Here i met a lot of great guys with awesome advice that also provided me with additional resources.
Within a month i was able to get my biopsy, an MRT, a contrast CT, and most importantly the PSMA PET CT done.
The biopsy revealed 9 out of 12 cores with Gleason 9 (4+5). After all the other scans it turned out to be localized, with only 2 lymph nodes and the seminal vesicles slightly affected.
Immediately after the biopsy i started to take Bicalutamid 50mg. After 40 days on this medication, time in which all the other scans were performed, i was administered Lupron 11,25mg 3 month-depot shot. The day before the shot i did my PSA again and i was down to 33!
Along with the Bicalutamid i did drastically change my diet: No red meat, No sugars, No alcohol, No dairy. I am eating just poultry (chicken, duck, turkey) and fish. Started to eat a lot of tofu alternatives and found quite a lot of meat-like products (burgers, steaks, etc) which offer a pretty good choice nowadays. Also there are a lot of milk alternatives, such as oat, almond, soy, peas, cashew milk, but make sure you get the sugar free version. There are also a lot of cheese alternatives, some better than others. Then i started to eat a lot of veggies, sliced raw with some olive oil (brocolli, cellery, radishes, bell peppers, etc.). No other dressings. I am also adding nuts (assorted).
After the shot, i started to also excercise, as Lupron apparently makes you loose muscle mass. I do several routines at home, without any equipment, just a mat. I am also taking Calcium 1000mg supplement, for potential bone loss from the Lupron.
I am also walking at least 10000 steps per day.
All in all, i lost about 10 lbs, which i great cause i got my BMI back in the green. This whole lifestyle change made me feel real good.
After 1 month on the Lupron, my PSA is down to 4.14 !
If at the 3 month mark my PSA is undetectable, i will redo my mpMRI and PSMA PET SCT scan, and then i will go nto surgery (Robot Assisted RP).
Since my spread is quite extensive within the prostate, they told that it is guaranteed that i will not be able to have kids and depending on the situation during the surgery they may or may not be able to save the nerves required for erection. This is why i am going to the private clinic of Martini Clinic in Hamburg where they specialize only on Prostate Surgery. Hopefully the will be able to save the nerves.
I hope my story gives you some useful information.
Also check out the https://ancan.org/ where they have weekly web chats where you can find amazing support from many people who have gone through this battle and also some very dedicated doctors that can provide you with additional support.
Stay strong and be positive.
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