Ten questions/concerns, not necessarily in priority order:
Prostate Cancer was diagnosed in 57 year-old, April 2024. Currently following active surveillance recommended by MD. The patient’s mother died of cancer at age 45 and the patient’s sister (she was MD) died at 58 of cancer. The patient’s only remaining sibling has had two cancers (breast, now TGLL), and now patient diagnosed with prostate cancer.
Concern 1: As written in my MRI notes, “Extracapsular extension: No obvious extracellular extension, although the degree of capsular contact by the left peripheral zone lesion would increase the likelihood of extracapsular extension.” The concern is that once extracapsular extension occurs, does the value of prostatectomy diminish? Also, once extracapsular extension occurs, is metastasis inevitable?
Concern 2: Erectile and urinary dysfunction are both strongly unwanted QOL measures, but literature indicates that the younger patients recover better in both areas, so with the CHEK2 genetic defect, family history of cancer/possible other genetic problems, could this be an active delay of the inevitable surgery where QOL outlooks worsen with advanced age?
Concern 3: What is the state of data around CHEK2 mutation and prostate cancer prognosis? Is this active surveillance simply an active delay? Will this active delay simply increase the risk of metastasis?
Concern 4: Biopsy Gleason score understated/understaged/undergraded given that it seems this occurs in 20 to 30% with Gleason 6. One study showed a 35.5% upgrade of biopsy Gleason scores when analyzed after histology from prostatectomy. In the group of Gleason 6 or less, there was 55% upgrading. In addition, my PI-RADS score of 4 is associated with a higher risk of Gleason score upgrading. How confident can I be that my current score is not undergraded?
Concern 5: The patient has experienced low-grade pain sensation in the rectal area adjacent to the prostate… is this anxious surveillance and likely psychosomatic? Or could there be an association with the growth of the 14mm lesion identified with MRI?
Concern 6: I hear of patients with a family history of breast cancer having mastectomy without a cancer diagnosis… should I, with a prostate cancer diagnosis, pursue state-of-the-art nerve-sparing robotic radical prostatectomy? What would the surgeon do with the lymph nodes that do not show being affected on MRI?
Concern 7: I have never had a testosterone level taken. I have never had my vitamin D level taken. Should these tests be part of the clinical picture for the prognosis and possible progression of my prostate cancer diagnosis?
Concern 8: The average age of prostate diagnosis is 69, but for my diagnosis at 57, how should this be approached differently given that my father lived until 84 and much of the prostate cancer literature addresses approaches built around patients mostly in their 70s?
Concern 9: With active delay, am I ignoring this statement? “Today, prostate cancer, when detected early, is almost 100 percent curable.”
Concern 10: Seeing the experience of former NIH director Francis Collins, MD, PhD, who was on active surveillance for 5 years and then had radical prostatectomy after progression. If this is the typical path, is it worth the unpleasant biopsies as part of active surveillance if it is a delay of the inevitable with the possibility of missing the window for a potential surgical cure? I am younger than most of the cases I read, so wouldn’t the young age be more of an impetus to not delay the seemingly inevitable?
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About 60% of men with low risk PCa on AS, do not have any progression with 20 years of follow-up in the longest-running trial in N.America. Men who have no progression in 15 years seem safe.
I suggest you get a Decipher test to see if your CHEK2 increases your risk of metastases.
I can only offer that I was GS 4+4 on biopsy and 4+5 on pathology. IMO, upstaging is more frequent than downstaging. As to judging upon a successful prostatectomy, a PSMA PET/CT will provide additional clues.
I would request at your next checkup / bloodwork to ask for a testosterone and vitamin D test. Not that this greatly matters with your concern above but a bassline measurement now might be of interest in the future.
I was diagnosed in my latter 50's, otherwise very healthy and fit. I endeavored to obtain several opinions on biopsy pathology, genomic testing and mpMRI findings - and to have alignment in findings. Once there was a consensus my cancer was not indolent, was possibly out, the idea of AS was abandoned. IMO risks come with all decisions, actions and inactions. I chose RP - remain grateful I did: removal of primary tumor burden; most accurate and complete pathology; and ability to be looking for a usPSA nadir of <0.010 - the value I chose to rely on as best indicator. My final Gleason was higher than the first opinion and my usPSA nadir was 0.050 - we immediately accepted my cancer had spread. Nine years later, several more curative attempts, no incontinence issues, no ADT, and gratefully, doing very well. Hope this helps. All the best!
This nomogram, one of several, predicts the extent of the cancer and long-term results following radical prostatectomy ://mskcc.org/nomograms/prostat... Uniquely, prostatectomy provides high confidence of the cancer's pathology and of EPE escaping the surgeons margin. In my case, EPE was not expected, My surgeon spotted it, cut around it, and took 20 lymph nodes (negative). pT3a. Post-op, an undetectable PSA is strong evidence the cancer has been removed. I've been negative 3.5 years. Minimal urinary and sexual impacts. I was on AS for 2.5 years with 3 biopsies (3+3, 3+3, 3+4). I think an earlier RALP would have caught the cancer before EPE. With periodic PSAs, I expect to identify any recurrence early on.
You are perhaps trying to achieve something that few/none have accomplished after a PCa diagnosis. Absolute answers to some questions that mostly don't have definitive answers....I suspect you are , not unexpectedly, trying to find reinforcement for already-formed leanings or opinions. Anyway, congrats on your effort to be more educated...before throwing the dice in this game!
He sounds a lot like me. I was diagnosed at 57, Gleason 6, t1c. I could have done AS, but chose to treat it. Early detection is the goal of prostate cancer screening — any cancer screening for that matter — and having achieved that goal, I decided that I wanted to treat my cancer. But here is where it gets a bit tricky. Most urologists still, for some reason, seem to give you only 3-4 treatment options. For me it was AS. RP, Photon radiation, or cryo. But it was really only 3 because though he mentioned cryo, he didn’t recommend it. But here is the take away — there are plenty of other alternatives out there that you should consider. HiFU, focal ablation, and proton therapy just to name a few are all very much worth exploring. I ended up choosing proton therapy, which I completed in Dec 2020 and I have been delighted ever since. No negative side effects of any kind. Further, the prostate capsule was treated as well as the seminal vesicles. That is something RP can’t do. Given your MRI findings, I would have conversations with both a photon radiation oncologist, and with a proton radiation oncologist to compare and contrast. I would also study HiFu and Focal ablation, and then have conversations with those providers as well. I am not a doctor, but it would seem to me prudent to select a treatment option that includes prostate capsule treatment and seminal vesicle treatment given your MRI report. . You have time to do some research here. The more you can find out the better off you will be. Good luck with everything!
I applaud your research and thoroughness in tackling your prostate cancer diagnosis.
Re: Concern 6: I hear of patients with a family history of breast cancer having mastectomy without a cancer diagnosis… should I, with a prostate cancer diagnosis, pursue state-of-the-art nerve-sparing robotic radical prostatectomy? What would the surgeon do with the lymph nodes that do not show being affected on MRI?
My niece learned through genetic testing, that she had the BRAC2 gene mutation (that causes various cancers) and had a double mastectomy. I can only tell you what I did at age 65. Had the same genetic testing, and was positive for BRAC2. Active surveillance for 2 years before biopsy revealed cancer in 8 of 12 samples. I had robotic RP nearly two years ago — and this is very important — the “nerve-sparing” objective was not successful.
I was cancer free for 13 months, before PSA inched up from 0.01 (undetectable) to .4. Radiation treatment and hormone therapy was the next course of action. Completed both regimens earlier this year and PSA is back to undetectable level.
I’m addressing Concern 6 because you should have a very candid conversation with your surgeon if you consider surgery. It’s possible (as I found out) that when removing the prostate and and surrounding lymph nodes (22), that nerves were nicked. I’m unable to have an erection without the aid of Trimex or a vacuum pump.
It’s not a huge deal for me since I’m closing in on 70 and sexual intimacy is not as high on the list as it once was. But you are a younger guy and that could be a deal breaker.
Ask your surgeon all those tough questions and continue your research on available options. I’m just sharing you my story to help you make informed decisions. My best for your safe passage on your journey.
As mentioned above you will find out there are no absolutes with this cancer. You will wander around till either the cancer forces a decision or you think you have found the best treatment fit for you. The only key to this is NEVER look back. Once the decision of treatment is made you no longer have a real reverse mode. Sure you can perhaps select other ways to try and stop the cancer. The best advice I can offer is to select the option that fits you and offers the best option of a cure.
Many guys have buyer’s remorse but all that creates is frustration, stress and anxiety which is not good and may lead to other issues.
The good news is you are starting early. As suggested above if you have the time and resources it would help to focus your research on one or two treatment modalities at first. Research them and go and talk to a doctor who uses them as to their effectiveness for your situation, etc then move on.
Buckle up. This is a long journey. Welcome to the club.
You have a lot of very specific technical questions. It seems that they are best answered by a physician who deals a lot with prostate cancer. I would recommend that you find one who does, if yours does not. I see an excellent physician at Ohio State whose specialty is prostate cancer.
That being said, I had my prostate cancer diagnosed by biopsy at age 61. I am a pretty strong believer in getting cancer OUT. So, I had radical robotic prostatectomy. The margins were not clear, so I underwent radiation treatments and androgen suppression injections for 18 months. Of course, during androgen suppression, sexual function is pretty well gone, but it recovered. The surgery also causes penile shrinkage, so they recommended a pump to help decrease that. I did that faithfully for about 2 years, and didn't have any significant issues with that, although it may be a bit shorter now.
My PSA has been undetectable for about 6 years, but is now going up very slightly. (0.21) No additional treatment is needed yet, but if it goes higher, I might need hormonal suppression or localized radiation (if a spot is found on PET scan). I feel fine and have no other issues at this time. No incontinence now.
chek2 here. I don’t have very up to date info but here is what I was told 5 years ago when I was tested before my prostatectomy (if anyone has more recent knowledge I would love to hear it.)
1) the CHK2 has several variants that are linked to prostate and breast cancer. I had a variant on CHK2 but it was not one of the known links to cancer. They called it simply a “variant of interest”. You may wish to ask if the variant you have is one of the ones with a known link to cancer.
2) they said that if I get a recurrence (still undetectable 4 years after surgery, cross fingers) I might have a better than average response to a new medicine called a PARP inhibitor. Good to know and keep in the back pocket for future use.
The one thing that I've learned in almost 14 years of living with prostate cancer and its various treatments is that there are no definitive answers, and that can be frustrating to those of us who like to put things in a nice little cell in a spreadsheet. 😂
I was diagnosed at 52 with a PSA of 5.0 ng/mL and a Gleason of 3+3. In retrospect, I may have rushed my decision and went ahead with a robotic radical prostatectomy.
The prostate came out cleanly—negative margins, no extracapsular extension, no lymph node involvement, no seminal vesicle involvement. The surgeon intended to spare both sets of nerves but removed one set out of an abundance of caution when he opened me up and saw the location of the tumor. My pathological Gleason was upgraded to 3+4.
It took more than a year to have decent sexual function return, and about 6 months post-surgery to where I could get away without incontinence pads. (I still had mild stress incontinence when I coughed or sneezed or tried to pick something heavy up.)
I was closing in on the magical 5-year post-surgery mark with undetectable PSA results when they became detectable again at 0.05 ng/mL.
It took nearly 6 years for my PSA to climb to the traditional definition of biochemical recurrence of 0.2 ng/mL During that time, we just monitored.
A PSMA PET scan at 0.22 ng/mL was inconclusive, and I went ahead with salvage radiation therapy (SRT) to the prostate bed only with concurrent androgen deprivation therapy (ADT) two years ago when my PSA had reached 0.36 ng/mL.
Initially, about 9 months after the SRT ended, it appeared that the radiation had had an impact, as my PSA was 0.13 ng/mL and then dropped to 0.11 ng/mL. However, and PSA test six months later (about 15 months after SRT ended) came back at 0.33 ng/mL. Six weeks after that, it was 0.37 ng/mL which was higher than when we started SRT.
A second PSMA PET scan at that PSA level was also inconclusive, not showing any disease or metastases.
On 1 May 2024, my PSA had jumped to 0.52 ng/mL. Without knowing where the disease is located, we've agreed to punt for six months and retest. If the PSA is high enough, we will likely try another PSMA PET scan. (PSMA PET scans detect the cancer's location about a third of the time when the PSA is below 0.5 ng/mL and upwards of 90% of the time when it's at 1.0 ng/mL and above.)
If the PSMA PET scan picks up a small lesion or two, we may be able to try radiation again. If not, we'll just move into systemic therapy.
The combined side effects from the surgery and radiation have worsened my sexual function and have increased my incontinence to the point where I wear light pads daily.
Kudos again on doing your research and asking these probing questions. Again, just realize that very rarely in the world of prostate cancer will you come across truly definitive answers. You'll have to make the best decision at the time with the information at hand with your own personal goals/objectives in mind. Once you do, move forward and don't look back.
Remember, you have time to do your research and make your decision.
Wishing you all the best.
Dan
P.S. I've been blogging about my experience in gory detail since Day 1 so, if you're interested in reading one patient's experience, you can find the link in my profile.
Thank you. I really appreciate being able to read your story... super helpful and informative. I have a visit at the end of the month to continue the inquiry.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Many of them are far more dangerous than the cancer.
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IMRT WITHOUT SPACEOAR PROTECTION (EPE) WORRIED ABOUT RECTUM PROBLEMS (PROCTITIS) & IMRT (20x,28x,???) vs SBRT 
Trying to decide Active Surveillance vs other options
Prostate cancer diagnosis 2 weeks ago scheduled for surgery 
Gleason score change from 3+4 to 3+3 with perineural invasion noted under Active Surveillance 
MRI from 3-30-2024.
