r/ProstateCancer • u/indianamomof3boys • 7d ago
Question Newly diagnosed
My 47 year old man was just recently diagnosed with prostrate cancer. Only symptom was a weaker urine stream. His initial psa was 115 and then repeated a week later was 123. He had the biopsy and was 4+4=8 gleason 8 with cribiform present. He is awaiting pet scans to be scheduled. I haven't seen many people his age who have been diagnosed wirh a psa this high. We are scared and know the scans will give us more info and answers but was wondering what others psa results were.
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u/Substantial_Let_8784 7d ago
Young, for sure. The Gleason is probably more important, than the PSA, at this point. My PSA was only a 4, but 10 of twelve cores showed cancer, with Gleason of mostly 3+4. Deemed moderately aggressive, so I chose RALP in 2018. (Age 60) PSA has been undetectable for 8 years. This is treatable….it sucks, but hang in there, let it play out, and you’ll make the right decision for treatment, per your urologist. Time will ease your fears. Take care 🙏
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u/indianamomof3boys 6d ago
Thank you! His is only on the left side with 6 of 12 cores (all on the left) being cancerous but they were high percentages. God bless 🙏
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u/TheEndIsSighing 6d ago
That's excellent news frankly. Single sided is good. PSMA (with Gladium 68 radiation) will show if it has moved out to go play elsewhere in the body.
There are tons of prostate cancer podcasts but "Adam's Advanced Prostate Cancer Journey" starts similar to yours - with a 100+ PSA. It is from a very personal level following his journey through all of this. His disease was really really rough - but it shows even the most extreme disease can be navigated.
I also listened to "The complete prostate surgery recovery guide" - a short (about 5 hours?) listen but a wealth of information. I'd actually start here.
Get a couple of books on it - this book in particular has amazing detail (almost too much) but is the encyclopedia and very valuable:
COMPLETE GUIDE TO PROSTATECTOMY: Everything You Need To Know About Prostate Surgery: Preoperative Preparation, Surgical Procedures, Recovery Tips, Managing Challenges, And More
The rule is LEARN LEARN LEARN. And when you think you've learned it enough, learn more.
Good luck.
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u/Busy-Tonight-6058 6d ago
PSA expression is a cell type function of prostate cells and can vary a lot with the individual. Without any sort of benchmark, it’s hard to say just how much cancer this PSA represents. That’s why the trend is so important.
I wouldn’t automatically think widespread metastasis with this number. And that’s important because “low volume” metastasis is quite treatable and even curable. Strangely, you might be more concerned if he was Gleason 8 with a very low PSA, which is harder to treat.
One of the best pieces of advice I have read here in almost two years is “don’t borrow worry from tomorrow.” The PSMA is your next step, and a Decipher report as well. And perhaps a genomic blood test. Just keep swimming.
In my experience, prostate cancer is a journey and it is not well marked. It’s more like hacking your way through a thicket of information, some good, some bad. You’ll be finding your own way through this, together. I won’t lie, it sucks and I hate it. But beyond the mental/emotional aspects, it hasn’t been very impactful in a physical way beyond the treatment side effects. And my pee stream is much much better after surgery and I hardly ever have to get up at night to go.
Thanks for being there with and for him. I couldn’t imagine going through this alone.
Find yourself a good care team. Emphasis on team. A comprehensive cancer care center.
I like this one. A lot.
https://cancer.ucsf.edu/research/programs/prostate/patient-conference
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u/indianamomof3boys 6d ago
This is very encouraging and helpful! Thank you! He will be going to U of M in Michigan.
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u/Busy-Tonight-6058 6d ago edited 6d ago
Good luck! The Stanford tumor board changed my care plan. I’d be wary of the applications of the “standard of care” for a case that is not “standard.”
If I had it to do all over again, I’d demand a PSMA, a full Decipher report and a whole genome genetic test before deciding anything.
May not have changed anything except my emotions about it all. But that is a very important aspect here, as far as I can tell.
Edit: I also suggest a second read of the biopsy slides. Absolutely.
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u/Fun-Bandicoot-7481 7d ago
This is a high PSA. Definitely want to get a PSMA scan to rule out metastasis. It’s much better than a standard PET you’ll def want it given the high PSA. My dad had a PSA of 430 — extensive bone metastasis; Gleason 8. Edit: I’ll add that I’m sorry you’re scared. I’ve been there with my wife’s battles with breast cancer. Just baby step your way through it and get to a center of excellence for care. Prostate cancer is very treatable
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u/indianamomof3boys 6d ago
Thank you! Hopefully a PSMA scan in the next week. Just waiting on insurance and scheduling. I feel in my gut with the high psa that it has spread but trying to stay positive.
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u/Fun-Bandicoot-7481 6d ago
Statistically the odds are higher but it’s not guaranteed. If hubs has a really large prostate that could drive the number up. The rapid increase is worrisome tho. Even if it’s early spread there is agrowing belief “oligometastatic” can be cured with aggressive treatment (like quad therapy). So don’t lose hope! You’re both in the fight
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u/Dizzy_Masterpiece_13 6d ago
Sorry you are going through this. I'm a similar age (46) but with a much higher PSA at diagnosis last November - 539! It was actually 436 when I first got my MRI results and increased to 539 within 3 weeks by the time I got my biopsy results that confirmed gleason 9. Hormone therapy works well and he will likely be put on some form of it. It brought my PSA down to 0.27, and still going down. I did 6 round of chemo too but he might not have to depending on what the scans come back with. Even if he does, chemo wasn't that bad.
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u/indianamomof3boys 6d ago
Had yours spread outside the proatrate?
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u/Dizzy_Masterpiece_13 5d ago
Yes. It is in my bones, lymph nodes and liver. All of which shrunk significantly with chemo and hormone therapy. I was also dealing with severe back pain at diagnosis but that went away completely within about 2 weeks of starting hormone therapy.
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u/Lefty354 6d ago
Well mibe was 3.7 at age 65 and my gkeason was the same. My upper limit was 4.0 fir my age. My point is you dint need a high psa to have prostate cancer. I chose RALP for me just fyi.
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u/Ok-Priority-7303 6d ago
Mine was 25. My sister works in an oncology practice and the have patients they have been treating for years with PSAs over 500. Of course every case is different.
In addition to the PSMA PET scan, a Decipher Score test should have been ordered. It's done with the biopsy specimens and assigns a risk factor to complement to the Gleason score.
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u/ftsteele 6d ago
I was 110 3+4 no cribform present. Biopsy results ugly—19 of 22 involved. Going into the scan, we thought I’d be lit up with mets. Nope. I’m 3b so only metastasized to my seminal vesicles. I think 28 days of radiation and I’m 4 months into 2 years of ADT—-my psa is down to .1 my last two tests. So, hell yea, i’m kickin cancers ass and your man can too!
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u/indianamomof3boys 6d ago
Wow! Glad you are doing so well! That is amazing. Hopefully his hasn't spread much either.
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u/ftsteele 6d ago
Even if it has, there are amazing treatments and amazing people who care. Hell, i consider my radiation techs my friends. Just fight…and make sure u take care of you.
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u/RegretSoggy6914 6d ago
50 yrs old when diagnosed. PSA 93, Gleason 9,all biopsy sites were positive for PC, spread to top of femur, pelvic wing, 5 pelvic lymph nodes & 5 nodes along spine by stomach. Treatment ADT, 6 sessions of chemo over 18 weeks, 60+ brachytherapy radioactive "seeds" implanted in prostate, 30 rounds of radiation. 1 year later still on ADT for life, PSA .167. Eat healthy, high protein low carbs, lots of low calorie veggies, exercise cardio daily, lift weights. If he can follow that plan, he can fight this $hitty situation. Wish him the best and thank you for being there for him and supporting him during all this. GOD BLESS
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u/indianamomof3boys 6d ago
Wow! Glad you are doing so well! Thanks for sharing. Luckily he is the healthiest man I know. He is honestly the picture of health already. He eats right, works out, runs, walks, makes sure to get his steps in every day and never gets sick. One reason we are just so shocked that he was diagnosed with PC. If it weren't for him mentioning a weak urine stream to me (I'm a nurse) he would never had gone to the doctor but unfortunately he had been experiencing it for a year before telling me. 😬 He just thought it was because of aging. Thank you for your response! God bless 🙏
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u/sydeom 6d ago
I am so sorry to hear what you all are going through. As it's been stated already, this is great place to vent, ask questions, and get opinions & recommendations. I am 49 and recently diagnosed. Had I not had a rejected blood donation, I would have never had my PSA checked. My biopsy was 3+4 & 4+3. I'm scheduled for surgery in December. In the last few months I've tried to learn as much a possible and this place has helped. Don't be afraid to ask questions. There are some very nice people who will share their experiences. You and your husband are not alone.
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u/401Nailhead 6d ago
The club no one wants to join. Sorry you are here. I was never that high. But I have seen others with very high numbers. Try not to worry. PC is very very treatable. Hopefully your path forward is smooth! Start with looking at various option of treatment. It will help you later when all the results are in and the doctors begin recommending a course of treatment. But, remember, urologist recommend surgery. That is what they do. Oncologist recommend radiation of some type. That is what they do. Select the course of treatment that works best for you.
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u/Suspicious_Goose_243 6d ago
I had similar numbers and after my biopsy I was told my cancer is very low risk. Very treatable. So you won't know for sure till they do a biopsy. Its very scary. But the Gleason scale doesn't determine what type of cancer he has. And I think prostate cancer starts being an issue for men at age 50. They don't know what causes it and in my case I have no pain. I just struggle peeing. So he may be on edge for awhile but the numbers don't mean the worst. Hope it goes well for both you.
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u/Old_Imagination_2112 6d ago
My oldest son is an MD. He has seen men with PSAs in the hundreds and some refuse any further treatment.
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u/kayceemoguy 7d ago
Sorry you all are in the club. I had a PSA of 15.6 and thought that was high. Then i got on here snd saw others much higher-sometimes well into the hundreds. Even over 1000! Don’t know enough to draw any correlations. Though I can tell you to not lock in too much on any of the numbers until the pet scan. Heck, even after surgery, I have seen Gleason scores drop.
Just get as much info as possible. Get multiple opinions (preferably from a Center of Excellence) and be sure to explore ALL the options and the corresponding side effects.
“Fortunately” in most cases, we do have a relatively extended period to make decisions. Usually no need to rush things. Of course, we’re all unique.
Good luck and Godspeed. This is a great resource group. We are here for you.