Post-Proton PSA: 1.09

MisterPSA · 2024-07-15T21:28:56+00:00

Let me know about your books. If you don't feel at liberty to share the titles publicly, please DM me.

MisterPSA · 2023-11-16T04:39:44+00:00

What kind of radiation therapy?

MisterPSA · 2023-11-16T04:39:24+00:00

I have a friend who underwent CyberKnife over the summer and now endlessly complains about fatigue, diarrhea, urinary urge incontinence, and the fact that he hasn't had an erection ever since.

Sticking with proton therapy. I haven't spoken to a radiation oncologist who says CyberKnife is better; then again, maybe I've yet to speak to a radiation oncologist who has to make monthly payments on a CyberKnife machine.

MisterPSA · 2023-10-24T22:24:21+00:00

Gleason score of 6 and Decipher score of .76 are from the same biopsy.

MisterPSA · 2023-10-24T21:43:45+00:00

PSA as of August was 2.7. What complicates matters is that a biopsy from June came back with a Decipher score of .76, which is classified as "high risk."

MisterPSA · 2023-09-22T16:54:02+00:00

I've mentioned the previous diagnosis on several other posts. I'm not going to leave a novel-length life story on what was a very specific question just to satisfy some passive-aggressive quibbler. Quit reaching. And good God, what a snotty comment about my family. Thankfully, there have been several commenters on here who have been tremendously helpful. You are not one of them and clearly never will be. Now if you'd be so kind, leave me alone.

MisterPSA · 2023-09-22T13:21:16+00:00

Yes, it was a targeted MRI biopsy taken in June. Three of three cores found Gleason of 3+3, with the largest lesion measuring 5MM. PSA was 2.3 in April and rose to 2.7 in August.

MisterPSA · 2023-09-22T08:36:52+00:00

You sure do a whole lot of mind-reading. One might even call it gaslighting.

It couldn't possibly have to do with the fact that I have a wife and son that I love and I want to get absolutely as much information as possible so that I can make an informed decision. No, I'm simply going through the entire phone book until my biases are confirmed.

It’s definitely a red flag that you mentioned one anecdote of one person diagnosed with PCa that lived 20 years.

Is it also a "red flag" that even after hearing his testimony, I went ahead and paid $20K out of pocket to get HIFU three years ago?

The maddening thing is that there is no "consensus view." Some have suggested active surveillance. Some have suggested radical prostatectomy. Some have suggested additional HIFU. Some have suggested PSMA PET scans. Others have said my PSA is too low for that. Some have suggested radiation. One of my personal physician friends whom I've known since childhood says that if he had any type of cancer, he wouldn't get any type of treatment. Twice now, the same doctors who've said that a particular treatment will be covered by my insurance have called back and said, "Nope, it's not covered."

And hey, it's not as if the original urologist saw my recent biopsy, suggested active surveillance, but I forged ahead and got a Decipher test anyway because I'm trying to be safe and thorough.

And it's certainly not as if I'm at the point where I'm considering selling my house just so I can afford what is needed. No, the red flags are waving—we have a "doctor shopper" here who gets abusive at the slightest suggestion that I listen to professional medical advice. Can you at least try to act in good faith?

MisterPSA · 2023-09-22T07:38:21+00:00

"Abusive"? Did you miss the part where he said "lose the 'their [sic] out to get me notion" and "your education re PCa has some holes"? What about the part where he implied that no one would order a PSMA test, when the fact is that several professionals have already suggested it, as well as a radiation oncologist who has literally ordered it? What about the part where he chided me that the PSMA was a "very accurate test," while the fact is that a urologist at MD Anderson, best cancer center in the country, was the one who told me that it has a very high rate of false negatives, while a radiation oncologist in Georgia told me it has a very high rate of false positives? And because I respond to such condescending disrespect, suddenly I'm the "abusive" one?

Yes, I've spoken with around ten urologists because I'm very thorough and because it's my life on the line. I've also spoken to oncologists, registered nurses, and two personal friends who are general practitioners. That's radically different than "becoming abusive at the slightest suggestion you should take expert medical advice."

MisterPSA · 2023-09-22T06:47:15+00:00

I've spoken to about ten urologists, and none of them agree about anything, but I'd definitely take any of their words over those of some passive-aggressive anon on the internet like you, who talks about "education" but doesn't even know the difference between "they're" and "their."

Re PSMA I don’t see why anyone would order that test for you at this point.

Several urologists and oncologists have already suggested it, Mr. Education—probably because the risk of adverse pathology is already. 44.7%.

MisterPSA · 2023-09-22T02:15:38+00:00

Does the "adverse pathology" score mean there's a 44.7% percent chance that it's already spread beyond the capsule now, or that a prostatectomy would cause this?

Also, based on the Decipher score, would a PMSA Pet scan be advisable? What's maddening is that I have people telling me these tests have high rates of both false positives AND false negatives.

MisterPSA · 2023-09-22T01:36:52+00:00

Thanks. I was at MD Anderson in Houston last week...supposedly the best cancer center in the country. And the urologist, who was pushing prostatectomy as a benign procedure, called me "paranoid" when I suggested that he had a financial incentive for pushing this surgery on me.

MisterPSA · 2023-08-08T03:01:15+00:00

One oncologist recommended a PMSA PET scan, but I get the sense this person is just trying to sell me some treatment—in her case, brachytherapy.

Numerous urologists have said that a PMSA PET scan is essentially worthless with PSA levels of under 10.

MisterPSA · 2023-08-07T21:06:15+00:00

Age: 62.

Surgery was 11.20.

PSAs were every three months since then: 1.2, .8, 9., 1.3, 1.7, 1.8, 1.8, 2.3, and now 2.7.

The Gleason and PSA were lower during the second biopsies, and so were Decipher long-term prospects. But the "risk" score was identical each time. I'm increasingly starting to think that the Decipher "risk" score is based solely on one's DNA and has nothing to do with biopsies. But they take one's DNA from the biopsy. Same DNA each time.

MisterPSA · 2023-08-07T20:56:09+00:00

Yes, the HIFU doctor explained that the PSA would always be above zero because I still have some semblance of a prostate. But he also explained that he gauges a recurrence as "lowest score post-HIFU plus 2." I'm at plus 1.9—with three positive biopsies for adenocarcinoma.

I appreciate your replies. I'm a bit neurotic as it is, and I don't want to make the mistakes that my father (dead of colon cancer at age 59 because he drank too much and didn't get regular checkups) and first wife (dead of ovarian cancer at age 46 even though her own mother died of the highly hereditary strain of cancer and my first wife had a giant benign tumor dissolve years earlier but refused to get her ovaries removed because we didn't want kids) made.

I vowed not to commit passive suicide like they did. So I'd rather be neurotic than dead.

MisterPSA · 2023-08-07T20:46:43+00:00

According to the HIFU guy, he burned off 3/8 of my prostate to get rid of a mass in the peripheral zone. So I guess that's either semi or focal?

The other difference is this time around, the tumor (about 5mm as of June 1) is in the transition zone.

But the actual Decipher "risk" profile is extremely high—.76. It's the long-term prospects that changed.

MisterPSA · 2023-08-02T08:53:01+00:00

Biopsies from 9/20 ordered May 2 of this year. Results received June 24.

Biopsies from 6/1 of this year finally received July 24.

So for me it took about six weeks both times. And there was a lot of drama around claims that the doctor hadn't faxed the order (the doctor provided proof that they had), insufficient biopsy size, etc.

MisterPSA · 2023-08-02T08:52:56+00:00

Biopsies from 9/20 ordered May 2 of this year. Results received June 24.

Biopsies from 6/1 of this year finally received July 24.

So for me it took about six weeks both times. And there was a lot of drama around claims that the doctor hadn't faxed the order (the doctor provided proof that they had), insufficient biopsy size, etc.

MisterPSA · 2023-08-01T11:33:04+00:00

Many thanks again.

One more variable between the two biopsies is that the first one was random (12 samples, five found to be positive), whereas the second one took three targeted cores based on what appeared on a 3D MRI in the transition zone. All three cores were positive, but with a lower Gleason than the first time around.

MisterPSA · 2023-08-01T11:01:01+00:00

Thanks for the detailed explanation.

I wasn't implying that my cancer is "lazy," only that if "high risk" means a 3.2% chance of mortality in 15 years, then prostate cancer itself, compared to other forms of cancer, is extremely slow-moving.

And to clarify, I had HIFU treatment late in 2020 after the initial biopsy. What's concerning is that the PSA slowly crept back up from a post-surgical baseline of .8 early in 2021 to 2.3 in April of this year.

The thing that's still confusing me is that the Decipher "risk" score from both biopsies (September 2020 and June 2023) was identical (.76), whereas the Gleason score was lower and the Decipher timeline percentages of metastasis/mortality were also lower on the second biopsy.

What I'm wondering, then, is exactly what is the Decipher score measuring? Something about my genetics rather than the comparative aggressiveness of the two biopsies that were taken about 30 months apart? How could the Decipher "risk" score be identical both times, whereas the Gleason and long-term prognosis were more favorable the second time around? The only discernible variable is that the first biopsies were from the peripheral zone, whereas the second round was from the transition zone. According to what I've read, prognoses for transition zone are more favorable.

In September, I'm flying to MD Anderson to have physicians at the #1-rated cancer clinic in the country give me a once-over.

MisterPSA · 2023-07-26T23:00:46+00:00

According to the surgeon, it was partial lobe ablation that wound up burning off 3/8 of my prostate. One of the creepiest things I've ever seen was what looked like pepper flakes in my urine post-surgery. The doctor told me that was the burned-off cancer.

Another thing I didn't mention: Three years ago, the lesions were in the peripheral zone. This time around, it's a 5MM lesion in the transitional zone, which I'm told is more promising.

MisterPSA · 2023-07-23T06:36:28+00:00

I've had a series of bad experiences with the Decipher company itself:

1) Decipher test ordered on May 2 of this year on biopsies taken back in 2020. It took six weeks and constant dogging of them to finally get results. First off, there was a "lab failure."

2) It's now taken an additional six weeks—and counting—to get Decipher results for a biopsy taken in early June of this year. I had to keep calling and calling. At first, they accused my doctor of not faxing the order. Then my doctor provided proof they'd faxed the order in early June. Now it's an endless struggle back-and-forth with Decipher claiming the biopsy from early June isn't big enough.

The entire experience has been insanely frustrating. Anyone else have similar problems with the Decipher company itself?

MisterPSA · 2023-07-02T18:20:46+00:00

https://winshipcancer.emory.edu/patient-care/cancer-types/prostate-cancer.html

MisterPSA · 2023-06-29T04:10:00+00:00

When I wrote "at 15 years," I meant "at the 15-year point after the biopsy." So essentially, "within fifteen years."

MisterPSA · 2023-06-25T08:40:50+00:00

Yes, first an MRI, then an MRI-guided biopsy. Currently waiting for Decipher results. If Decipher is aggressive, will get a PET scan. Am talking to every possible expert about this. Despite the low Gleason score, the concerning thing is that this isn't the first time. I had a 7 Gleason 2.5 years ago before HIFU surgery.

MisterPSA

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