Pressured by oncologist

@billkmed
On your Decipher test, I got mine back with a low risk. I know many get numbers but I am not familiar with what the numbers mean. Is your number a low, intermediate or high risk? That test per my R/Os (I had two opinions done also) is key to treatment plans as has a better diagnoses of aggressiveness of cancer.

My two consultations came back with same diagnosis and treatment plan. So I was lucky. I have read many posts who get different opinions. It is why the Gleason Scores can be interpreted differently and a lot of us get the Decipher to more accurately define it. Are you in Washington State. There are some excellent proton cancer treatments centers in California.

What it comes down to is what you are comfortable and what diagnoses you feel is more accurate. That goes for the treatments also. Most of us get multiple treatment options to chose from. But since you had such a difference in diagnosis and treatments I would (if me) do a 3rd opinion.

I know I had my second opinion from Mayo Jacksonville done at UFHPTI. It was done with having my medical information provided to UFHPTI. There was no difference in diagnosis but was able to get proton radiation at UFHPTI versus only photon available at Mayo Jacksonville.

Mayo Jacksonville did PSA tests, Urological exams, MRS with contrast, biopsies (MRI Fusion), bone scan and Decipher test. The only additional test that UFHPTI wanted to do was PSMA which I had done at Shands.

I know having this occur is a real headache with having to deal with the prostate cancer. But hang in there!

If I was you and had two different opinions I would seek a 3rd. Most of the time you can get another opinion by providing your medical informatino to the other facility. Can you contact a major facility like Mayo, Cleveland Clinic, John Hopkins, etc. about a 3rd opinion?

I'm not a medical professional and I really don't know, but I think you made a smart move going to Fred Hutchinson which is a recognized cancer center of excellence (CCOE). I did as well (Mayo Phoenix) and I believe it's far and away the most important decision I made regarding my care when I got PCa. For me and my circumstances I chose surgery, but I felt the staff were clearly interested in giving me options and helping me figure out the best path forward rather than just pushing a particular solution. I could be wrong, but I felt they weren't as driven by the profit motive as perhaps some other providers may have been. Also I feel all aspects of the care I received was state of the art. Just my 2 cents. Best wishes.

I don’t know what they mean by “ Suspicious for intraductal, perineural invasion, cribriform”, either they show up in the slides or they don’t. If they are there, they mean the cancer is much more serious than 3+4. Cribriform in particular is very aggressive making your 3+4 much higher.

Good to Here he went somewhere else make sure they review the slides and give you a more specific reading.

U would also ask for third opinion. Especially since first doctor did not even mention PSMA or any further imaging to check if anything spread around, and with ductal involvement there is about 1 to 2 % chance for that. Definitely find Oncology Urologist who specializes in PC , in my experience regular urologist was incompetent on all levels. We will go to second opinion to UCSF and will send slides for third opinion just to have cross-reference about gleason level.

I Agree with @jc76 and @surftohealth88, it is worth getting a Third opinion through telehealth at Mayo or another center of excellence.

When you are ready to hear experiences regarding removal or different types of radiation and radiation machines, come back here as there is certainly no shortage of insight in all of the above.

That hard sell is just ridiculous…but some docs just don’t get the optics, you know?
A second - and maybe a third - opinion is a necessity. And if a second read of your slides does actually find intraductal cribriform patterns, your Gleason 3+4 actually becomes higher - possibly 4+3 or more. And an intermediate Decipher score doesn’t downplay the chance for metastasis.
Doubt there was any kickback going on with your RO but Fred Hutchinson is simply a better choice for treatment care. Your case could be more complex than anticipated and they have much more experience in dealing with the curveballs than any local RO.

I'm also in Portland and my Urologist wants me to proceed with biopsy even though PSA and MRI are both inconclusive but the MRI pointing to a potentially benign condition. He also doesn't want to do any other blood tests like the PSE, didn't do a DRE. I finally got him to agree to another PSA in 3 months and if numbers increase than a biopsy. Also will schedule another MRI in 6 months based on radiologists recommendation. Its just frustrating and hoping I'm taking the right approach. I'm hoping to maybe do a PSE sooner if I can find someone to organize it.

Thanks - if I remember correctly decipher scoring is 0-100 so I’m intermediate there as well.

Sorry for confusion - the suspicious was only for intraductal proliferation. Cribriform & perineural invasion identified.

Decipher scores are 0 to 1. I know two people that had high deciphers scores .95 and .96.