PSA History: Climbed 50% in last 6 months (previously had been steady)
MRI: April 6th, 2023: PI-RADS 2, ”No seminal vesicle invasion”
DREs: negative
Biopsy: Random, 8 / 12 cores positive, 6 with 3+3, 2 with 3+4, aka Grade Group 2
Family History: Father had prostate cancer
What I've done so far.
* Received 2nd opinion on biopsy from Johns Hopkins (who upgraded it from GG1 to GG2)
* Saw 2 urologists and 1 radiation oncologist
* Everyone has recommended treatment over active surveillance and surgery over radiation (including radiation oncologist, who himself had RALP).
Why treatment and not active surveillance?
* It's high volume disease, not talking like 1 or 2 cores here
* A couple of those cores are 3+4, so who knows .. could be 4+3 all around, hard to say with a random biopsy
* Family history
* Men with PSAs under 10 have better outcomes
* Younger men recover faster from treatment, and I'm not getting any younger
Why surgery and not radiation?
* I like the certainty of removing the source entirely and the subsequent clear PSA reading
* Supposedly will handle side effects and surgery better because I'm younger
* Leaves open the open of radiation afterwards if necessary (doubly important if I'm cancer prone, this is my 2nd cancer -- 1st was renal, surgically removed in 2016)
* Side effects less likely to be severe given my age
What's next?
I'm seeing another urologist on June 20th, but getting tired of not hearing anything new
My urologist has done over 1000 RALPs, starting in 2001. I'm thinking of scheduling the surgery for September, giving me the summer off.
Interested to hear from anyone ... advice or support .. or whatever. Thanks for listening.
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MakeItRainbows
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Mind you that this forum and predominately its sibling "Advanced PCa" is biased towards irradiation, despite the fact that most users of the latter started off with prostatectomy, followed by salvage RT to finally end up with hormone therapy.
Search my past posts* regarding second cancer incidence following RT. Proton does better, although with your life expectancy and history it is something to consider seriously.
(*) Replying to the thread entitled "Heidelberg" in aPCa forum by user Grommi.
What I have heard is that there’s not enough long term (15-20 year) studies on the impact of RT. The study you cited looks like it had a 5-6 year median followup.
I was dx in 2018 at age 58, all cores positive gleason 8/9, PSA 280. PSMA scan showed no detectable spread (!!) Consulted with 2 urologists and three teams (Johns Hopkins and Jefferson in Philadelphia; and a local Urology group in NJ ). I went with RALP at Johns Hopkins. Following surgery PSA 0.5 so did radiation and 2 years lupron + Zytiga. No chemo. Now off of all treatments for 2.5 years and PSA undetectable since radiation. Next PSA test this month (fingers crossed). My results probably not typical. Downside: totally impotent, and some incontinence (I wear a pad for yardwork or exercise, but not at night or just sitting around). Would I do the same treatment plan again (vs chemo/rad/hormone): absolutely! If you can, John Hopkins was fantastic. Good luck with your decision.
question: how soon did you do radiation after the rp? why 2 years of lupron and zytiga if radiation gave you undetectable psa? curious because i had my 1st psa 2 days ago, 10 weeks after rp and result is .31. testosterone level is 38 due to hypogonadism and side effects of low T are more unbearable to me than prostate cancer (I've never had any symptoms from the cancer). i agreed to the rp because the psma scan showed no detectable spread outside the prostate, doctor said i could go back on androgel and keep my sex life intact, and would regain continence. now it all seems a lie. just trying to figure out how i want to proceed.
I had BPH symptoms before dx. I had surgery in late November, post-op PSA of 0.5 in Jan and confirmed in March. I started ADT in April. IMRT to pelvic field and prostate bed started shortly after and finished in June. I wanted to end ADT early but medical oncologist convinced me to do the full 2 years. All this treatment was based on findings from the STAMPEDE trials. Radiation oncologist and medical oncologist disagreed on what brought my PSA down to undetectable. During ADT I gained almost 40 lbs even with exercise (tennis and some distance running up to 10 miles). But the weight is now gone, and I've felt pretty darn good for the last 2 years.🤞
I agree 1,000 RPs in 20 years is really not that many. At Hopkins they had already finished 2 procedures the morning of mine and I was scheduled for 8:30 AM. You might want to find someone who's done more procedures. A few hours after surgery they get you up and moving; a funny memory I have is about 5 or 6 of us walking around the circular ward in our hospital gowns pushing our IV poles.
I am 59 dx with 2 core 3+3 and 1 core 3+4 (pattern 4 is about 40%). MRI showed tumor size of 1.2 cm in diameter. RALP is recommended. What is the percentage of pattern 4 and how big is the tumor size?
I have decided for RALP. I had heart bypass surgery in 2013 involving all three major arteries (5 bypasses). So I will try to avoid ADT/HT as long as I can. Your condition is better than mine with pattern 4 of about 20%. but don't wait, take action.
I agree that with your "unfavorable intermediate risk" PCa, you need treatment. But you can expect better results, and certainly less toxicity from radiation. Read this:
* I like the certainty of removing the source entirely and the subsequent clear PSA reading
Surgery does not provide that "certainty." If you filled out the MSK nomogram, in the link above, you will see that you have a significant chance that the cancer is outside of the prostate capsule. Radiation treats a margin outside of the capsule that surgery doesn't reach, so the odds of "getting it all" is higher with radiation than surgery. We see this in clinical studies - for low risk and favorable intermediate risk PCa, surgery and radiation have equivalent long-term results (both over 90% cure rates). But for unfavorable risk, like yourself, radiation results exceed prostatectomy.
* Supposedly will handle side effects and surgery better because I'm younger
That is true, and it is also true for radiation. Healthy tissue repair is better in younger men.
* Leaves open the open of radiation afterwards if necessary (doubly important if I'm cancer prone, this is my 2nd cancer -- 1st was renal, surgically removed in 2016)
Salvage therapy is certainly possible after radiation. If the recurrence is regional (in pelvic lymph nodes), you get another chance at radiation of that area. If the recurrence is within the prostate (which is rare after radiation), the site of the recurrence can be treated with focal brachytherapy or SBRT:
* Side effects less likely to be severe given my age
While true for both, prostatectomy has a 20% chance of lasting incontinence, and a 65% chance of permanent impotence. Incontinence rarely happens with radiation, and impotence is about 30%. Your young age means that you have more good years to live with those effects.
* ... including radiation oncologist, who himself had RALP
Get another RO! - if he doesn't believe in the therapy he offers, he is in the wrong business.
Urologists Are surgeons and will always recommend it. But the risks seem to be more for recurrence. No one knows why? Advances in radiation are impressive.
Hey, MIR. As an "always" APCa-er (4+5), I don't respond in this forum much, but I will throw in my 2 cents. I am 6.5 years post-diagnosis at 48 y.o. Some opinions for your consideration:
* You are obviously well-studied and likely won't make treatment decisions solely on bulk statistics. You are young and the statistics are, quite naturally, derived from the experience of much older men. Never expect traditional results - good OR bad. Your journey is singular and only becomes a statistic when its over.
* At "unfavorable intermediate risk," PCa treatment choices become much more like Texas Hold 'Em than chess, i.e., poker is a game of incomplete information. As I see it, you are still at "pre-flop." Based on the information provided in your post, there is not yet a informational point that specifically helps you coherently discuss your metastatic risks with your care team. For example:
The first two are due diligence for informed longer term treatment planning. They take time and sometimes aren't even offered. I will urge you to advocate hard for these because of your personal and family history. The last will give you an immediate talking point with your providers. Various validation studies of SKCC nomograms have been performed, but I am not aware of a study specific to the "pre-op" nomogram and I haven't really looked.
* Lastly, there is the significant consideration of quality of life (QoL). Even "minor" PCa treatments like RP and radiation are difficult. From experience, I can say that aggressive PCa treatment is something truly beyond - whether it is the acute, short-term treatments of chemo and radiation, or the (likely) forever treatment of androgen deprivation therapy.
Keep those rainbows coming, MIR, and bring always bring QoL to the decision table!
Very similar to my situation when i started my journey. I was 42 in Fall 2015 with a psa of 8.8, 4+3, 9 of 12 cores and a few with a high percentage of cancer (if i remember correctly). I felt concern that cancer the cancer was very close to, if not had already escaped, the prostate but wanted to try to catch it and cure me, so I rushed for a surgery with a urologist in NC (didn't want to wait for robotic surgery and never really considered another option since I wanted to be aggressive). I often wonder now what if I used another doc or treatment... would my outcome have been better? I think you absolutely need treatment asap. Now, I really don't think it mattered what surgeon or that I had an open surgery... some cancer had already escaped. Given the biopsy and psa, I probably should have really considered other approaches to treat the whole area (as Tall Allen suggests). The following dinner, I did have salvage radiation (along with hormones treatment), and my psa stayed unmeasurable for a few years, but eventually my psa started to creep up. Now I'm on zytiga and my journey continues. So in sum, carefully weigh your options. And given your stats, really consider the possibility that the cancer may have already moved beyond the prostate. Sorry for the tough situation. Be strong and enjoy the ride. I have used PCa to my advantage to appreciate and savor life more. Best, J.P.
I had RALP at U Chicago. My uro knew his stats re incontinence and erections. Low risk with correct surgeon. Started kegels month before surgery and continue today, 5 years later. No issues. Also prescribed low dose viagra to keep blood flowing. Still good. My normal Uro was a good friend of mine and while his practice could have done surgery, he sent me to UC. Uro there was a pioneer and taught others and did thousands. No regrets. If some already out of capsule, there is SRT. Long term PC specific mortality slightly better than radiation.
I had my surgery about six weeks ago. Age 66. My PSA was 27 and my results so far are great. Incontinence is minor. First psa post surgery is below .050. My only advice is that the Dr.s I worked with under played the effects on ability to get an erection, until AFTER the surgery. Not as much an issue at 66 as 46 so if this part of your life is important look for the best surgical team as possible and make sure they understand your priorities.
My pre-op picture was very similar to yours; PSA I think about 7-8, G 3+4. I was diagnosed prior to finding this site. I might well have gone to a RO had I read this site first. The main high-risk feature I had on MRI was "suspicious for extracapsular extension". I was not offered AS; I would not have gone that way had it been offered.
My main reason for not considering radiation was fear of salvage surgery. A gentleman I knew (he was my dental patient) had a horrible response to salvage surgery in irradiated tissue. So yes, my choice was partly an emotional one. I would not argue with Tall_Allen's opinion. Still I do not regret my choice of RP (laparoscopic , NOT robotic).
My post-op biopsy did not change my G3+4. But happily the post-op evaluation was that the tumor was confined to the prostate. Probably would NOT have made AS the way to go, but that's water under the bridge.
The other big difference was that I was considerably older (66) when I was diagnosed in 2018.
What's being left out of the comments above is the statistical data the represents 1/3 of patients will fail first line therapy. In all probability mostly due to diagnosis than the PCa itself. If something was missed, or latent PCa comes to the surface later, then of those patients who require 2nd line therapy, statistics show 1/3 of those will also fail. In addition, there will be side effects, regardless of therapy, half (50%) of patients will not return to pre-treatment function, sexual and continence... Statistics also show that advanced Patients, which we don't know we are unless the disease progresses, benefit later from earlier debulking by surgery as first line therapy. Newer statistics show that RT has superior results over surgery, but not by much. And for a long time this was also true over 10yr survival. Past 10yrs the benefit swung to surgical Patients, with out knowing why. But regardless if therapy 10yr overall survival is nearly 100% (98%) and 15yr not far off those numbers with the exception of a small percentage of Patients. And yes, tracking is hard, because the average age of PCa diagnosis is 65, and considering the OS numbers above, crossing the threshold of life expectancy for the majority of patients, it's hard to determine cause if death as there are co-morbidities that are introduced from therapy as well. The old saying that a PCa patient is more likely to die with Prostate Cancer than from it is true. For patients diagnosed on the younger end of the spectrum, we don't fall into those convenient statistics.
So how does all that mumbo jumbo factor I to our decision process? It's not easy, and is always an conundrum. The one way we mitigate potential pitfalls is by getting access to the very best care we can. This is usually at a Major Cancer Center and one rated in Excellence! Travel if you must, and don't skimp, but it's at these COE's you'll get the very best, in care, and results!
Not sure I can add much to all the well thought out replies here but I will say that at 60 and with a Gleason 9 confined to the Prostate I chose RT and so far am happy with the choice. I just finished my 44 sessions last month and all the side effects from that are gone 3 weeks out. I’m just left with the ADT which is tolerable.
Do your own research but FWIW that’s where I ended up.
I was 48 when I was diagnosed with PC three years ago. Found early due to family history of PC. As with you - RO recommended surgery due to my age and catching the PC at an early stage whereby the thought surgery could get it all and save radiation for a backup. Next job for me was to find the best surgeon in the country who could 1. Get the cancer 2. Save the nerves for normal sex life and 3. Keep me from wearing diapers. After months of searching I ran across Dr Edward Schaefer at Northwestern in Chicago. He has a podcast we Dr. Peter Attia on you tube that is a few years old, but explains things well. Dr. Schaefer has over 7000 RALP surgeries and is one of the best in the World at this. His goal is get the cancer but save the quality of life for the patient.
My surgery was on May 25, 2021. Catheter remained in for 2 weeks after surgery. Had sex with my wife the day the cathater came out and have been urinary continent from that day on. I do take Cialis daily, and will spike in some viagra if I’m planning on a long night, but everything works. PSA has been <.006 for 2 years now. Just went to Chicago for my 2 year checkup and Dr. Schaefer said he feels good about where we are. Good luck in battling this bitch, but with the right people and accurate information you can. Always dig deeper and ask questions.
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I'm new here. I've been diagnosed with prostate cancer.
decisions/decisions
Newly Diagnosed Prostate Cancer
At last I've come to a decision.
Just diagnosed and a bit scared.
