Info overload

Take a deep breath. With the characteristics you describe, I personally would probably opt for RT not surgery. The adjuvant RT post-surgery will compound side effects. Urologists will probably argue that you need to get rid of the mothership, but modern RT has similar long-term survival odds to the proposed trifecta.

Intraductal is different from cribriform. There is apparently some evidence that the latter is not as responsive to RT, but I have never heard that of intraductal.

Definitely do a Decipher and a PSMA. The first will give you information about the cancer’s aggressiveness (risk to metastasize), the second will show if it has already spread. The fact that your current urologist did not order these and directly rushes to RARP would be a red flag for me.

Definitely make an appointment with a radiologist at a center of excellence. While you are at it, also get an appointment with a medical oncologist there and also a second opinion from urologist. Tell them
that the cancer is aggressive to get a quicker appointment. One more month or two before treatment is not going to make much of a difference.

Hi Sjorgie,

We are sorry that you are in need of this forum, but confident that its many contributors will be able to provide valuable insights.

Here is a link to one of several studies that may be of help if you haven't already reviewed it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11083518/
Bill

I am so sorry that you and your husband have to go through this ordeal and as a wife I understand you completely. I also understand not trusting medical community - they basically failed my husband TWICE regarding PC so please do not wait with treatment. Ask for Decipher and PSMA ASAP !
IDC is VERY aggressive. My husband has both - cribriform and IDC and and they were found in only one single core , 2 more samples 3+3 and the rest clear. Guess what , after waithing for 5 mos to get surgery done his gleaon was upgraded to 4+5 and IDC was the reason, not cribriform ! Not only that, cancer breached capsule so they found focal mini extensions. 😭 His pre-op PSA was 5.8 so do not pay attention to PSA - IDC and crbriform are aggressive and PSA does not have to correlate.
We had consultations with both the surgeon and radiation specialist and both confirmed that RP was the best choice since aggressive cancer asks for aggressive approach. I do not know what is your husband's age or how fit and healthy he is -that can be deciding factor also.

All in all - yes, do not trust anybody but follow your gut instinct and ask for fast treatment - do not delay for more than 2 or 3 mos , at most if at all possible.

Wishing you all the best and much better outcome than ours 🍀🍀🍀

Thank you for your response. I mentioned the decipher to the radiologist, but it wasn’t addressed. Is that an analysis of the biopsy? He did have the PSMA which showed no metastasis. Our health insurance is Kaiser of Northern California. They will not refer out for a 2nd opinion to a center of excellence. The Surgeon we saw is a Surgical Urologist Oncologist. My husband made the decision to have it out vs radiation and the surgeon said that it is easier to do salvage radiation after the surgery then it is to do surgery after radiation as there will be scar tissue to remove from radiation.

Would a decipher give us any additional useful information? The intraductal on its own is what has tipped this to be considered aggressive. Also, in hindsight I wish things had moved quicker because of the sheer volume of positive cores.

Bill - thank you for the link. I do have that one saved as well as one published this year out of China that looks at the prognostic impact of intraductal.
https://bmcurol.biomedcentral.com/counter/pdf/10.1186/s12894-025-01690-1.pdf
I do pretty well understanding things until all of a sudden everything looks like it’s written in Greek and then I feel a bit overwhelmed.

Thank you so much! The PSA seemed to throw everyone since it wasn’t high. I’m angry that he wasn’t fast tracked when it showed up on both sides of prostate and a really high volume of cancer. Surgery date is set for September 4th. He turns 69 on the 5th. Health is so so. Meds keep things in check for diabetes (no insulin) and HBP.

Yes, Decipher is a genomic test on the most aggressive biopsy core. It gives you sn estimated risk of future metastases. It can usually be done quickly. Check out their website. Veracyte (the owners of the decipher test) has an Access Program that offers affordable rates for patients whose health insurance does not cover it.

If I understood you correctly, they will do RT+ADT shortly after surgery. After that, there are no further salvage options, so the point that you can always do RT after RP, but not vice-versa, is moot imho. I would definitely talk to a radiologist. For aggressive cancer they will likely suggest the inclusion of a brachytherapy boost, that is a high dose internal targeted radiation of the prostate. By my reading of the literature it is almost as effective as RP and has far fewer side effects that RP+RT in short order. The internal lesions need years to fully heal and putting radiation on top after a few months can result in permanent incontinence and guaranteed impotence.

You can have radiation only once in certain region - you can not do it twice. So the idea is that if cancer cells survive radiation in a prostate gland, you will not be able to repeat radiation to that region. Once you radiate a prostate it becomes one thick mess that is almost impassible to remove. Yes, there are one or 2 surgeons in the USA that are able to perform that task , but not everybody has a means to travel nor pay for that.

Correct, but the risk if an intraprostatic recurrence after HDR brachytherapy is fairly low, < 5%, though not zero. You are trading off this additional recurrence risk for fewer side effects if the alternative is RP plus adjuvant RT. Patients need to be aware of these trade-offs to take informed decisions.

@sjorgie
I see you posted to @topf but wanted to give you my personal experience with this and the importance of Decipher test was for me.

When I had my consultation with Mayo R/O and we went over treatments it was radiation and hormone treatment because my biopsies risk were listed as intermediate.

He suggested Decipher test and bone scan. Bone scan came back negative. I chose to get Decipher and Medicare paid for it. Note: Decipher will help reduce cost and payment plan if your insurance turns it down.

My Decipher test came back low risk not intermediate. That changed my treatment plan from radiation and hormone to radiation only. After all I read and saw posted about hormone treatments I was very glad to get that news.

So you can see I am alway promoting Decipher test. The test uses existing biposies. I had 30 rounds of proton radiation at UFHPTI. I did so because I wanted proton not photon which Mayo Jacksonville had not proton. UFHPTI also did a PSMA and it also came back negative.