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Posted 12/12/2022 12:21 AM (GMT 0)
Hi Folks, I'm Jim. I'm 76 live in San Jose CA and a biopsy finds I have prostate cancer (but active and healthy otherwise). I'm married with two adult children and 4 grandchildren. My father died at 85 of a heart attack. My sister just informed me dad had prostrate cancer but didn't have more done than surveillance for it due to his age and heart condition.

My PSA has risen steadily from 4.1 in 2018 to 7.9 in November 2022. My long-time urologist had always assured me that the score itself wasn't as important as "having a rapid, sudden jump." He had treated me over the years for occasional prostatitis and did an ultrasound and biopsy in his office with about 5 samples in around 2019 or 2020. They were negative. He prescribed tamsulosin and that helped my urinary frequency. He retired and I began seeing a new urologist in 2021. In April 2022 I complained of tenderness and discomfort in my left testicle. I had Scrotum and Testicle ultrasound which indicated normalcy. My PSA continued its steady rise, and when it reached 7.6 in July 2022 he scheduled a prostrate/ pelvis MRI for August 29, 2022.

The MRI found my prostate gland volume was 43 cc (not sure how that stacks up--I'm 5'10 and 162 lbs) and a suspicious lesion 1.5 x 1.7 cm in the peripheral zone at base of the gland with extension into the transitional zone. Also, abnormal early arterial enhancement seen in the lesion. On September 9th my doctor advised me of an 80% chance of prostrate cancer and the next step would be a biopsy. My wife and I were set to take a cruise from September 24th returning October 17th. He told me to go on the cruise and have the biopsy after I returned. Because I tested positive for covid on return from the cruise, the biopsy was delayed until November 22nd. My artemis fusion biopsy resulted in 7 core samples out of 15 taken having prostatic adenocarcinoma. One was group 1 (3+3) 5% of tissue no cribriform gland formation and no perineural invasion. 3 samples were Group 2 (3+4) ranging from 10% to 20% pattern 4 and 20% to 90% tissue. Two of these 3 had perineural invasion without extraprostatic extension.

The other 3 samples were from the "highly suspicious lesion." Sections demonstrate 3 0f 3 cores involved by prostatic adenocarcinoma. Gleason grade 3+4, Grade group 2. Approximately 30% pattern 4, including cribriform gland formation, involving 80% of tissue. Perineural invasion is present with a focal area suspicious for extraprostatic extension identified.

My doctor recommended a PET CT scan next to see the extent of any carcinoma. It's scheduled for December 20th. He also recommended seeing an RO and perhaps Surgeon each of whom he would refer me to.. He explained based on similar cases odds are radiation therapy would be preferable to surgery for my prostrate in part because complications would likely be greater with surgery.

My symptoms are frequent peeing, dribbling on stopping, and feeling like I still have to go much of the time. My left testicle is sometimes very tender and sometimes causes sharp pain. While I get some lower back/pelvic aches and pains from golf I attribute that to arthritis.

My Immediate Concern--Deciding on the healthcare team to use. I lean toward Stanford Healthcare's cancer center thinking they are (1) more likely to be most familiar with latest best practices (part of the National Comprehensive Cancer Network); (2) they are likely to have a "cohesive dedicated team." And (3) they have several trials going on that maybe I would qualify to join.

I want to begin the next steps ASAP. Any ideas on choice of doctors/hospitals, etc or specific next steps?
I want to be positive and optimistic but I worry the cancer may have spread.
thanks








Posted 12/12/2022 3:55 AM (GMT 0)
Not sure about Stanford, but UCSF and UCLA are often recommended with respect to prostate cancer therapies.
Posted 12/12/2022 4:10 AM (GMT 0)
I don't know a lot about the medical issues that you raise. I just figure that you're probably scanning the site waiting for replies. Sunday can be kind of slow, but I'm sure you'll be seeing from thoughtful responses tomorrow. I hope all goes well for you.
Posted 12/12/2022 5:27 AM (GMT 0)
Long story to establish that you have prostate cancer, welcome to the club. You seem to have a good understanding of the basics.

I assume your doctor is talking about a PSMA-PET scan where a PSMA tracer is utilized to locate prostate cancer cell concentrations outside of the prostate. This is a good idea and is quickly becoming a standard of practice for confirmed cases of significant PCa.

A 43 cc prostate is not out of line for older men but imaging is not all the accurate so who knows. Many are surprised when a prostate is removed and it is much larger.

UCSF and Stanford are both well respected places for prostate cancer with UCSF probably getting more press. Either would seem to be a good choice. Don’t hesitate to schedule with both of them and see what they propose. You want to be comfortable with doctors you select and the solution you choose.
Posted 12/12/2022 6:44 AM (GMT 0)
Thanks guys. I apologize if my story was too detailed. I wanted to get as many facts out there as possible not knowing which details were important. I don't really know yet the significance of many of the details. I trust with the groups help I soon will.
Posted 12/12/2022 2:29 PM (GMT 0)
Hello Jim and welcome. Your detailed description is actually quite helpful and we will be able to give you lots of feedback as time goes on. Your old uro probably was a bit asleep at the wheel as slow and steady PSA increases are clearly a sign of potential prostate cancer. In any case your new urologist seems on the ball and you definitely should see both surgeons and radiologists as you proceed. Stanford is a great place as is UCSF.

One of the first things I would suggest is a second opinion on your biopsy slides. Reading prostate cancer slides requires great expertise and you want to really know what they say. We often suggest Dr. Epstein at Johns Hopkins and many of us have received our second opinions from there. Check our sticky thread at the top of our forum to see how to do that or simply Google second opinions on prostate biopsy at John Hopkins. Getting this second opinion is an important step.

Beyond that, I'll just tell you that there are multiple kinds of radiation (HDR Brachy, SBRT, IMRT) that may cure you and RO's may be expert in one but not all. You may need to consult more than one RO to get the full scope of options.

I'll also advise that you get well educated on our cancer. I can recommend our sticky thread along with several books. "Guide to Surviving Prostate Cancer" by Dr. Walsh is more surgically biased but is highly detailed. Prostate Oncologist Dr. Scholz has two excellent books I can recommend: "Invasion of the Prostate Snatchers" and "The Key to Prostate Cancer". You can also search YouTube for various Dr. Scholz videos that I think are extremely helpful.

Good luck. We are here to help you get through this.

Jim
Posted 12/12/2022 3:48 PM (GMT 0)
Sorry, did not mean to discourage your full explanation of the situation, lot better than “I have prostate cancer, what should I do?

Keep in mind older men can have all sorts of prostate related issues not related to cancer so there may not be a direct link to your cancer and the symptoms you have been experiencing. The PSMA-PET scan should be helpful in completing your diagnosis then you can worry about treatment considerations. Hang in there.
Posted 12/12/2022 4:07 PM (GMT 0)
Jaw/Jim, welcome to the forum. I would only add to the responses you’ve already received, by emphasizing how important it is IMO to get that second opinion from Dr Jonathan Epstein at John’s Hopkins. Reading PCa slides is a somewhat subjective process, and many pathologists will be looking at prostate slides one minute and bladder or breast slides the next. Epstein and his team only look at Prostate cancer slides and he is considered by most as the gold standard in prostate pathology. I was a Gleason 8 (3+5) according to the local pathologist. Epstein downgraded me, which may have totally changed my treatment course.

Good luck, stick around here, there’s a lot of knowledge experience, and support
Posted 12/17/2022 8:31 PM (GMT 0)
Yep send to Hopkins and get a clear picture of the cores.
Relax and come here often for good information.
This will be a journey and you have time to make the best decision for your case.
Good luck and welcome.

Glen
Posted 12/17/2022 10:46 PM (GMT 0)
Thanks Glen and others.
I have chosen the Stanford Prostrate Cancer team for my case. I plan to have a Stanford pathologist read the biopsy slides first and may send to Dr Epstein once Stanford is done with the slides.

The doctor I am seeing first at Stanford, Geoffrey Sonn, has published papers on "Prostrate MRI imaging interpretation varies substantially across radiologists" and "Prostrate cancer yield in MRI lesions varies across radiologists". I will discuss "variability of reading my biopsy slides" with him and see what he says before deciding whether to use Dr Epstein.

My PSMA PET CT is this coming Tuesday, so I am anxious to get the results.

Jim
Posted 12/18/2022 3:52 AM (GMT 0)
I’d recommend getting a 2nd opinion on the biopsy even if it not Epstein at JHU (although I’ve gone to him twice). The assessment of the biopsy is necessarily subjective, and heavily impacts course of treatment. A concurring opinion will give you a warm and fuzzy that you know what is going on.

No downside to getting the genomics testing either, as long as you understand it shades the odds, not gives you a 1-0 up or down determination.

Your urinary symptoms aren’t necessarily tied to your PCa. I think most severe PCa shows itself symptom-wise when it gets to the bones. Your symptoms sound like “run of the mill” old guy prostate issues.

You seem to have a great approach to this. Best of luck!
Posted 12/20/2022 9:50 PM (GMT 0)
Off to my PSMA PET CT today. Anxious to find out what's going on and where.
Posted 12/29/2022 2:55 AM (GMT 0)
My PSMA report came Monday.
"PyL binding within the left peripheral zone of the prostate suggestive of primary malignancy. No additional abnormal PyL activity to suggest metastasis."
I'm meeting with Stanford doctors next week. They have all my tests (MRI, Biopsy slides, PSMA PET CT) and will independently evaluate the images and biopsy samples. I was fearing that my Pca had spread beyond the prostate, but the PSMA report has me calmed down. Looking forward to meeting my new Stanford care team.
Posted 12/29/2022 6:07 PM (GMT 0)
It should be an interesting visit. Your scans and biopsy pathology have some good items and some not-so-good items. Normally, a 3+4 biopsy pathology is not a bad thing but the additional risk factors of possible extraprostatic extension (EPE) and cribriform cell structure complicates the evaluation.

My thought is they should get a genomic test on the biopsy cancer cells and a current PSA to complete the information data set. They will then have all the information possible short of surgical removal and examination of the prostate. The extent of radiation treatment and duration of hormone therapy (ADT) will be a function of how serious they think the problem is so study up on those options (IGRT/IMRT, Hyprofractionated IMRT/IGRT, SBRT, HDR Brachy, etc) for your meeting. You don't have to know everything at this point as the concepts are enough. and good luck!
Posted 12/29/2022 6:45 PM (GMT 0)
Hi Jim -- i also live in san jose and was treated locally by the northern california prostate center. our numbers appear similar. you need to be treated, imo, and the sooner the better. don't overthink it and avoid surgery. good luck man!
Posted 12/29/2022 6:50 PM (GMT 0)
A biopsy is just a glimpse into a tiny amount of prostate tissue. When a biopsy Gleason score comes back as a 7 (3+4), you should be aware that--based on men who choose surgery--the actual Gleason score if tissue throughout the entire prostate is examined may be upgraded to a G7 (4+3), and sometimes higher. This happens because (a) the percentage Pattern 4 lesions sampled in the biopsy underrepresented the prostate-wide percentage in the totality of the cancer, which was actually >50%, or (b) lesions that were G8 or higher were completely missed in the biopsy. (One's Gleason score, either in a biopsy or post-surgery, is that of the lesion with the highest Gleason grade.)

IMO, the higher the percentage of Pattern 4 in a G7 (3+4) biopsy, the greater the chance of an upgrading to a G7 (4+3) or G8 (4+4).

The bottom line is that a biopsy-based assignment to the "Favorable Intermediate" Gleason Grade Group cannot be taken to the bank as far as accuracy goes. Men who choose surgery will find out their true Gleason Grade in the post-op path report; those choosing radiation have only the less reliable Gleason grading that was assigned in the biopsy. The true Gleason Grade has implications for the risk of biochemical recurrence (BCR), especially if the cancer was not confined to the prostate.

Djin
Posted 12/29/2022 7:10 PM (GMT 0)
Thanks Djin, Mumbo and F8
I will study up on the suggested topics before my consultations. Wow the layers of complexity are amazing. Sounds like surgery will reveal the most accurate assessment of how serious the cancer actually is, but perhaps carries with it additional "collateral damage risks." I will discuss these concerns with my doctors.

F8
Why are you so adamantly against surgery?
Posted 12/29/2022 7:20 PM (GMT 0)

JAW31 said...
Sounds like surgery will reveal the most accurate assessment of how serious the cancer actually is...


Not often a great advantage, and probably most often not really an advantage at all, in my humble opinion.
Posted 12/29/2022 7:21 PM (GMT 0)

JAW31 said...
Thanks Djin, Mumbo and F8
I will study up on the suggested topics before my consultations. Wow the layers of complexity are amazing. Sounds like surgery will reveal the most accurate assessment of how serious the cancer actually is, but perhaps carries with it additional "collateral damage risks." I will discuss these concerns with my doctors. ...

My remarks are intended only as a comment on the assignment of the Gleason score, and, consequently, future risk. Radiation and surgery are both valid treatment options for many men. Although surgery will tell you the status of cancer growth--whether or not the cancer was confined to the prostate--radiation treats some of the surrounding area. Men who opt for RT have to rely more on the workup imaging for the question of cancer confinement to the prostate capsule.

Djin
Posted 12/30/2022 3:01 AM (GMT 0)
Jim - I would not worry too much about the surgical option as you are in the age group where surgery is not recommended very often unless there is a reason. You are about 10 years older than the average man with PCa so the considerations favor RT methods.

Surgery pathology confirms or conflicts with the biopsy pathology grading and observations which can be better, the same, or worse than expected. In all cases, you will have had primary treatment. With radiation, the doctors go with the best estimate from the scans and biopsy and determine which RT modes are appropriate, length of treatment, and duration of HT/ADT. The 10 year survival rate is very high for most men nowadays (except for the worst cases) which pushes you into your mid 80's where most men are supposed to reach if you made it this far.

ps: Don't poke the sleeping F8...
Posted 12/31/2022 1:30 AM (GMT 0)

JAW31 said...
Thanks Djin, Mumbo and F8
I will study up on the suggested topics before my consultations. Wow the layers of complexity are amazing. Sounds like surgery will reveal the most accurate assessment of how serious the cancer actually is, but perhaps carries with it additional "collateral damage risks." I will discuss these concerns with my doctors.

F8
Why are you so adamantly against surgery?

life changing side effects are largely the byproduct of surgery or radiation after the prostate has been surgically removed. read the many tales of woe on this forum -- incontinence, untreatable erectile dysfunction, shortened penis, penile implants, artificial sphincters that sort of work, peronies from penile injections.........
Posted 1/3/2023 9:26 PM (GMT 0)
HIFU vs TULSA vs HDR ?
Posted 1/3/2023 11:37 PM (GMT 0)
Don't get ahead of yourself unless that is what Stanford is recommending. HIFU and TULSA-Pro are usually considered focal therapies whereas HDR and other radiation methods are whole gland treatment and surrounding margin. The real key will be how Stanford evaluates your specific situation and what level of risk it presents. They may recommend a belt and suspenders approach or a mono treatment to kick the can down the road given your age.
Posted 1/3/2023 11:48 PM (GMT 0)
I'd give this page a look.

https://www.prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/
Posted 1/4/2023 3:42 AM (GMT 0)
Suggest you investigate SBRT. Five simple treatments, highly effective and very little risk of side effects. Stanford offers it. Glad you’re making an informed decision.
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