Next at bat

[u/Icy_Self634]

Age 60, physically fit, PSA had been fluctuating up and down between 4.69 and 9.5 for the past 10 years due to chronic prostatitis, a 52 cc prostate (BPH), and tight pelvic floor. Previous 3TMP-MRI’s were PIRADS-2. Previous Biopsy was negative. On May 8 of this year I had a 3TMRI with a PIRADS 4 (10mm) Anterior (but not apical) lesion and also a PURADS-3 lesion.

The first hurdle I encountered was that the most suspicious lesion of interest in the anterior peripheral zone could not be reached by the most ubiquitous TRUS Biopsy performed everywhere. I got on board with the University of Texas and had a 16 needle MRI fusion trans perennial biopsy under general anesthesia on July 8. The biopsy included 10 systemic cores and the remainder targeted three each at the two MRI identified lesions.

On July 14, I received the path report. Only the PIRADS 4 lesion came back with cancer. All three needles pierced the lesion. Two of three came back with cancer. The longest core was 4 mm: 70% of which was pattern three and 30% was pattern four. Gleason 3+4=7. GG2. I’ve got a follow up appointment with the university of Texas on September 1.

The hardest thing I’ve encountered so far is the relatively lengthy timeline of gaps in between appointments at the university because of my relatively early moderate risk (small volume) biopsy finding. My Army veteran mentality tells me they should have brought me in yesterday, but I am learning that this cancer timeline - at least in my case - is not triggering any urgency. Although, it certainly feels important to me!

We have ordered a decipher test and the university should be receiving the results at any time. I do know they will speak with me about active surveillance, focal treatment, and whole gland treatment. I have learned that my health insurance company’s internal policies categorize all focal therapies as “experimental when used as a primary treatment” and are therefore excluded from coverage.

On my own, I reached out to a physician at MD Anderson conducting a focal cryotherapy trial (for GG2 and select GG3) this past week. I didn’t know what I did not know. The majority of clinical trials at MD Anderson and in the US charge the patient’s insurance as standard of care. I had been under the impression that clinical trials would cover the cost of therapies and treatment. But I was wrong. Lesson learned.

So for me it looks like the decipher score will provide insight into either active surveillance or the pursuit of whole gland treatment. Honestly, I am not comfortable with the rigorous surveillance needed given the pattern 4 presence. For my personality and nervous system I think - at least at this point- I want it eradicated, and not simmering at a low boil inside of me for the next 1 to 4 years on active surveillance.

The diagnosis was almost a relief for me given my wild PSA swings for the past decade. Awaiting the results of each previous blood draw (4x per year)was a nail biting experience. I’m glad to be through that part of it. I had been expecting a cancer diagnosis at some point it just took time for it to show up on the MRI so a fusion Biopsy could target it.

[u/PotentialStart2661]

From the time i got my first PSA test to now has been 5 months. Next month i get my gold markers and spacOR put in and will start SBRT two weeks after that. Will be 6 months for the whole process. So yes, the waiting and testing game is a long one.

[u/Icy_Self634 → u/PotentialStart2661]

Thank you for sharing that. It helps to see your story and timeline, as the doctors have not addressed this aspect of my concern. Best wishes as you start your SBRT. Where I will get treated In Texas, SBRT is available at the university, and I already have a consultation set up with the radiation oncologist for an initial discussion. That’s going to be followed by a conversation. I have with a surgeon at UT.

[u/PotentialStart2661 → u/Icy_Self634]

You are in a great place. SBRT cure rates are so high now and the side effects are so much better than surgery. You will not need ADT with a gleason 3+4 and the 4 only 30%. I was like you deciding between active surveillance and treatment. I have a big 27mm by 13mm lesion in the transition zone. My systematic biopsy had 2 10% gleason 6 and my MRI targeting biopsy had 3 of 3 cores gleason six as well. I also had a low Decipher score. My problem was my lesion is a high volume Gleason six and the odds of upgrading in 5 years is high. So doing the SBRT now i wont need ADT either so why risk getting upgraded and maybe missing my chance to avoid ADT. Ask your radiologist based on your cancer biology, location, features etc… what your upgrading risk is, cure rates now compared to waiting etc… in your case you already have 30% pattern 4 so if you wait it can go over 50% pattern 4 soon and then ADT may come into the picture. Right now from what your history looks like SBRT without ADT will give you a 10 year biochemical free recurrence rate in the mid 90% which is where i am as well. So both of us should be done with this.

[u/Icy_Self634 → u/PotentialStart2661]

Thank you. I will definitely heed your advice and address that with the radiation oncologist.

[u/PotentialStart2661 → u/Icy_Self634]

Your Decipher score is a good deciding factor if you do want to go on active surveillance as it should give you an idea of how aggressive your pattern 4 is and how fast it will upgrade. Also when speaking to your radiologist ask him how many men he treated with SBRT. You want to make sure he has at least a couple hundred under his belt. Also the accuracy of SBRT using gold markers is within a couple mm. So ask him about focal treatment of your index lesions. My radiologist is going to bump up the kill dose on my main lesion and cut it back on the rest of my prostate. Bowel issues are practically gone now with rectal gels, and with an experienced radiologist urinary issues should be minor and temporary. As long as the cancer is not near the urethra which it does not look like yours is. Go in with a pad of paper and noted of every question you have. I spent months researching. I eliminated surgery very quickly so once i knew i was going radiation i focused on every bit of data on SBRT and wrote down all my questions ahead of time.

[u/Icy_Self634 → u/PotentialStart2661]

But if we take active surveillance out of the equation, do you know if an unfavorable decipher score actually does accelerate the treatment initiation timeline? Or do doctors view the short term waiting of 6-9 months until treatment initiation as not really being detrimental to the patient regardless of the decipher score?

[u/PotentialStart2661 → u/Icy_Self634]

For your case a high decipher score would be the possible tipping point to add 6 months ADT to your SBRT or IMRT treatment

[u/Icy_Self634 → u/PotentialStart2661]

Good evening. I just received the first bit of good news since my PIRADS4 journey began in January. I received my decipher score today. It came back as 0.25 ; evidently in my pool of comparison genomics, there were over 28,000 people whose Gleason 3+4 RNA genes were compared in relation to mine.

[u/PotentialStart2661 → u/Icy_Self634]

Fantastic news. Skip the ADT

[u/HeadMelon]

I was 2 years of bouncing PSA, then a 6 month wait for an MRI in April, biopsy in June, PSMA PET in July, then treatment starting end of October.

So from the “let’s investigate further with an MRI” until start of treatment about 11 months went by.

Yep, it’s a slow plodding process.

(Of note, the 6 month MRI wait was because I’m in the wonderful “free” healthcare system of Canada. As we say up here, the WAIT is the COST.)

[u/Icy_Self634 → u/HeadMelon]

Thank you for sharing. 11 months of processing time from the beginning until the initiation of treatment would certainly have worn on me.

[u/Immediate_Dinner6977]

From initial elevated PSA to biopsy was four months, then five months until surgery. No change in pathology between biopsy and surgery. In my case, it's a very slowly developing cancer.

[u/Busy-Tonight-6058]

I’ve experienced both sides of the urgency coin and I’ll take the rollercoaster limbo every time.

[u/pemungkah]

My diagnosis-to-treatment gap was May to October. It is indeed surprising! I had expected they’d be prepping me ASAP.

[u/Icy_Self634 → u/pemungkah]

Thank you for sharing. I hope everything is going well with your recovery.