Prostate-Kidney and BPH Decision for treatment.

[Seminole0412]

Hi everyone. Hoping to get some input from the collective experience and knowledge of the helpful people on this forum in making a decision on course of treatment. I apologize for length of post, but, with two issues (prostate and kidney) it took a bit to accurately explain. Newly diagnosed with Prostate Cancer as of Nov 1 2023. 59 years old, physically fit. I live in Southern Virginia. I Met with Multi Discipline team at Inova Schar Cancer Institute in Fairfax VA on 7 Dec 2023 and have a 2nd opinion meeting with Multi Discipline team at Duke Cancer Center in Durham NC on 5 January 2024.

A quick back story to add context.

Summer of 2023 began having issues beginning the urine stream and then stopping mid stream without completely draining bladder. Dull pain in lower pelvic area and lower left side of back. Primary Care Dr ordered PSA test and CT scan of pelvis. PSA came back 5.3 (August 2023) CT scan (1 Sep 23) revealed 13mm x 15mm tumor in left kidney. No other abnormalities. Referred to Urologist for prostate/kidney. Oct 5 2023 met with Urologist (Inova Urology Fairfax VA) who performed DRE for prostate (abnormal) and pointed out on CT scan that kidney tumor was problematic due to location (near artery) and referred me to head of Urologic Oncology at Inova Schar Cancer Institute in Fairfax VA as she had more experience with complicated surgeries and offered the best opportunity to save most of the kidney (partial nephrectomy).

9 Oct 2023 Appointment with head of Department went well and she ordered MRI of pelvic area as well as prostate. MRI of Pelvic area confirmed Kidney tumor, but, showed no other abnormalities of sign of spread to other organs. MRI of prostate resulted in PI-Rad 5 Score for 1 suspicious lesion, Seminal Vesticles (within normal limits, Neurovascular bundles (within normal limits), Lymph nodes (no enlarged nodes), bladder (within normal limits) Bone Marrow (No suspicious bone lesion confirmed). Impression from MRI was:

1. Focal area suspicious for clinically significant prostate tumor, centered at the midline, extending bilaterally at the apical peripheral zone. 2. Prostate Volume 33cc 3. No evidence for extracapsular extension.

Based on this MRI a Transperineal MRI assisted biopsy was schedule for 1 Nov 2023

Results of biopsy on Nov 1 2023 were Gleason 3+4=7 on 8 of 15 cores, Grade group 2. Gleason 3+3=6 on two cores and the remaining cores benign. All positive cores 5%, or Less than 5%. Pattern 4 lacks large cribriform morphology.

PSA had increased from 5.3 (August) to 5.9 (Nov)

Bone Scan on Nov 24 2023 showed No evidence of osseous metastatic disease.

Decipher Test .49

Intermediate Risk Factors of T2C and greater than 50% of cores positive put me in Intermediate Unfavorable category.

Met with MO, RO and urologic Surgeon at Inova Schar on Dec 7 2023. Their recommendation was:

Primary recommendation due to my age of 59 and overall good health and best option to get rid of cancer was for Robotic Assisted Laparoscopic Prostatectomy (Nerve sparing)

• Based on my research I came into meeting leaning heavily toward radiation with only advantages I see for RP over RT being an accurate assessment of true nature of cancer via post surgery pathology, No more BPH, and PSA becoming a better barometer of cancer spread. Otherwise, all studies I have read indicate far fewer odds of SE via RT.

Secondary recommendation was for RT

• EBRT with 6 months of ADT plus Brachy boost (This seems like the best option to me for potential cure, although HDR Brachytherapy as monotherapy appeals to me as well)

• RO said if I didn’t want to do the above Radiation due to ADT then he would consider HDR Brachytherapy as a monotherapy, but, said that the EBRT+ ADT+ BT would be best treatment from his point of view.

o RO also said due to my taking Tamsulosin (which works great for me) for urination issues would recommend procedure to ablate the urethra with 2 month wait after that to begin radiation.

I would welcome any input on pros/cons I haven’t considered of either RP or RT. My specific questions:

1. Anyone had The tri modal RT above after having Urethra ablation for BPH? My primary concern with RT is if I don’t have ablation procedure will have SE of Urinary retention. Or, If I do have the ablation procedure run risk of incontinence if RT done too soon after procedure.

2. Going to Duke for 2nd opinion Jan 5. Anyone with experience with Duke or other Institution on east coast for Tri modal RT that you would recommend?

3. Any stories of Success with above RT?

As for the Kidney. Due to small size of tumor and slow growing nature of kidney cancer the recommendation is to handle the Prostate first then deal with kidney after healed from Prostate treatment. Probably by use of SBRT in order to try and save the kidney. They think due to location of tumor a successful surgery for partial nephrectomy is unlikely and entire kidney would have to go.

Thanks in advance for advice and help.

[Tall_Allen]

1. Another option is to use ADT for about 7 months to shrink the prostate and the tumors within it. Take urodynamics every couple of months until there is no further progress against urinary retention. At that point, begin radiation.

Or if there is no progress against urinary retention, you can get the TURP then, but you have to wait 6 months before radiation, because of risk of incontinence.

In either case, there is no risk of cancer progression because you will be on ADT. This would extend the time you will be on ADT, but may (or may not) be worth it to you, because it decreases the risk of urinary problems.

BTW, I have a 14 mm lesion in one kidney that I have been on active surveillance (AS) for for the last 4 years. In that time, there has been no growth, and my kidney specialist gave me 3 options: (1) imaging every 18 months (2) biopsy to determine if it's RCC, or (3) a new PET scan that identifies RCC. I chose option 1 because I would continue on AS even if #2 or #3 showed it is indeed RCC. I am fine with not knowing for sure.

[Seminole0412 in reply to Tall_Allen]

Tall Allen, Thanks for the reply. I have never even heard of urodynamics. I will do some research on it and ask the urologist. If I can ask where can I find the study or information that says 6 month wait is advised after TURP so I can be armed with that to talk to RO since he said a 2 month wait is fine.

I'm glad to hear your kidney tumor has been stable. The docs are hesitant to do a biopsy due to the location of the tumor and that's why they recommend SBRT for treatment. AS is not an option for me if I want to get back to work. I'm an airline pilot (grounded) until I get both these issues taken care of. I have to show (The FAA doctors) the kidney tumor is either not cancer via biopsy (which is unlikely to be benign) or get rid of the tumor. Regardless, I have to treat the prostate first and take care of it.

If you have any other advice or input on the EBRT/ADT/BT I would certainly welcome it.

Thanks

[Tall_Allen in reply to Seminole0412]

I don't have a reference about the TURP- I think it is common knowledge. It's been known for many decades.

[Jewelrylady in reply to Tall_Allen]

Is this correct that there is no risk of cancer progression because he will be on ADT?

[swwags in reply to Jewelrylady]

Yes. ADT will put the cancer to sleep. As long as the cancer is castrate sensitive, he is fine following TA's advice. They have core samples and can/ should tell him what mutation he has.

[Jewelrylady in reply to swwags]

Thank you. I thought ADT can fail and lead to castrate resistance which is progression of cancer, so even if someone is castrate sensitive there is still a possibility of ADT failure.

[Tall_Allen in reply to Jewelrylady]

He is non-metastatic. ADT will not fail for at least 5-10 years.

[Gearhead]

I was going to ask a question of both Seminole0412 (FSU?) and Tall_Allen re do they know if their kidney tumor is kidney cancer (usually RCC) or metastasized PCa. But then I learned something that I'll share in case any others are as uninformed as me: "Prostate cancer very, very rarely spreads to the kidneys. Fewer than 50 cases of this have ever been reported worldwide."

[Seminole0412 in reply to Gearhead]

Yes I am an FSU grad. Bummed about exclusion from the College Football playoff, but, obviously there bigger issues than that in life to contend with. I was worried that kidney was a metastasis from PCa but Doctors said No it was not. Just two separate incidents.

[Teaker1]

Hi Seminole. I had a robo RP in 2007 when I was 55. I was told it would be nerve sparing, but the primary goal was to remove the cancerous prostate. I chose surgery over RT because the MO said if I needed follow up surgery, that might not be possible after RT. Evidently, the scarring caused by radiation can impede surgery. The 2007 surgery removed the cancer, but it also left me incontinent and impotent.

15 years after the surgery my PSA began rising suggesting a recurrence of the cancer. I did ADT with Lupron and RT, which seem to have worked. My PSA is undetectable while my testosterone is slowly climbing…now about 90, but still way below the normal range. Upsides: I don’t have to shave everyday, and I rarely have distracting sexual fantasies. My mental focus is much improved.

While robo surgery is no walk in the park, I found the final weeks of RT difficult with increasing fatigue, rectal and urinary pain. I was so tired, I stopped going to the gym where I had hoped to maintain my muscles during ADT. I think radiation scarred my bladder and caused bladder cramps that were only relieved by urination. But, it was difficult to urinate. There were several days of extreme pain standing at the toilet and praying for the flow to start. The pain was intense, and I was not aware of that SE. Over a few weeks the bladder calmed down and the painful bouts of urination lessened.

Hope this is helpful to you. Best of luck.

[Seminole0412 in reply to Teaker1]

Yes that is helpful. Post radiation urinary retention is my primary concern with RT. I'm glad your bladder calmed down. I certainly know what is like too stand over the toilet hoping to get the stream going.

[j-o-h-n]

I know less than Les knows.....but I do think your kidney is not a concern.........It is your prostate. It is my experience that If you're going to have a RPD it isn't such a big deal. But make sure you get a very experienced urologist and verify that he did not have an argument with his wife the morning of the operation....... Happy Christmas.........

P.s. I hate flying.........by plane that is........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/22/2023 5:46 PM EST

[RogueEcho]

I had robotic RP three years ago at what I thought was an excellent surgical center, but unfortunately I remain stress incontinent and under treatment for metastatic PC. I would advise to find the best surgeon you can find who will do the surgery (not students assisting) who can show you their track record on nerve sparing success, etc... Or avoid surgery and go on ADT therapy for six months, and see if PSMA scan is available at that time to diagnose extent of cancer inside and outside of the prostate.

I know the feeling of waiting for flow to begin but that may be relieved with meds or turp and I would have much preferred to have my body un-mutilated to wearing pads all the time and never having an erection again.

There are many new therapies just around the corner and I'm currently on my second clinical study at Cornell. I have avoided chemo and regret not listening to my gut three years ago...

Hope this helps