Weird situation here

Hope everyone is doing well. I haven't posted here in a few years but see some familiar screen names still around.

I'm about to turn 69 years of age and had an RP in early 2018 at Hopkins. Pathology showed organ-confined disease, negative margins, etc, but Gleason was 4+5.

I did periodic PSA's, all undetectable, for over two years...into the spring of 2020...and then, well, slacked off until August 2023 at which time the number came back at: 6.9. (No need to tell me I'm an idiot. I already know that.)

I then saw a local uro who ordered a PSMA-PET scan and warned that with a PSA at that level, the scan would likely come back positive for either regional or distant metastasis. In fact, in anticipation of this, he scheduled me for an Eligard shot to be administered after the results came in. After the shot, his plan was to refer me to an MO for further treatment, which he expected would start with a Zytiga/Prednisone drug combo.

Then came a surprise: the PSMA scan came back totally negative...not even a hint of radiotracer uptake anywhere. So the uro had second thoughts about the Eligard and advised me to follow up in three months with another PSA and appointment to take stock of the situation. He thought an immediate course of radiation of the prostate bed made no sense because with the PSA at 6.9, the horses were presumably already outside the barn.

At that point, I went to Hopkins for a second opinion. Their protocol required that I first see an RO. The RO ordered an MRI of the prostate bed while recommending radiation...contrary to my local uro's opinion on the subject.

The MRI came back negative for indications of cancer in either the prostate bed or surrounding area. Meanwhile, in another weird twist, three additional PSA's over the course of three months all trended downward, most recently decreasing to 5.3 from the original 6.9.

At my request, the RO set up a consultation with a Hopkins MO who said the team there found my case quite unusual. On the one hand, she said, radiation was the only shot at curative treatment. On the other hand, the chances of the disease being entirely confined to the radiation field in the prostate bed were questionable at best. Plus both the PSMA and the MRI had been negative.

She ended up nominating me for a clinical study/trial at the National Cancer Institute in Washington. I'll undergo an intensive battery of tests there on November 28: labs, CT scan, bone scan, etc...and also have the opportunity to consult with a well-regarded doc whose specialty is recurrent prostate cancer.

If, based on the screening results -- the scans need to be negative -- I'm accepted for participation in the study, I'll be administered a series of PSAs and PSMA scans over the course of five years...unless they advise me to bow out before that in favor of active treatment.

Oh well, regardless of where things go from here, I'm feeling at peace and grateful for huge blessings in life...none of them deserved. And that's a fitting note on which to wish everyone a Happy Thanksgiving!

My diagnosis is you have a confused thyroid gland or something that lost it’s recipe. Making the wrong thing.

Here’s to being a wonder of science!

Marine, that is strange indeed. I have no suggestions but just wanted to wish you well and hope for you to get to the bottom of this.

Jim

Make sure the psma pet was head to toe.

Odd case for sure.

Hmmm - https://www.hopkinsmedicine.org/news/articles/2022/11/finding-metastatic-prostate-cancer-that-doesnt-make-psma
There are some older tracers that are not as effective as the PSMA tracers which may provide some results in your situation.

Djin and Mumbo, thanks for your thoughts.

Yes, it was pointed out to me that in a small number of cases, I think maybe 5%, the cancer cells are of a type that is not PSMA-avid...if that's the right term.

The report itself says "68Ga-PSMA-11 PET: Physiologic distribution of radiotracer noted in salivary glands, lacrimal glands, blood pool, liver, spleen, pancreas, ganglia, bone marrow, bowel, kidneys, and urinary tract"...but then goes on to note several times, with respect to the skeleton and other imaged areas: "There is no focal radiopharmaceutical uptake to suggest metastatic disease."

However, three tiny "sclerotic lesions" were detected but in the absence of uptake assessed to be likely benign "bone islands." The thing is, if worst case, these were cancerous but not PSMA-avid, then it's hard to figure why over the course of three months the PSA has actually dropped by 25% or so.

The radiologist did recommend a repeat CT at another facility to "document continued stability." That's going to happen at NCI on November 28.

Stephen, the PSMA scan was run from head to mid-thigh.

Thanks again to all.

Sr Sailor said...
An Axumin or a Pylarify scan is highly recommended, now that the Pluvicto scan hasn't turned up anything relevant. These scans do not target PSMA but, obviously, do need to be interpreted by a prostate cancer imaging specialist.

Sr Sailor, I'm not sure I'm understanding. Pylarify does bind to PSMA.

UPDATE: I've been unofficially accepted into the National Cancer Institute study and am scheduled to have my first PSMA-PET/CT scan as a participant on December 21.

Really impressive place. We arrived at 6:30 and left at 3:00 after a battery of blood tests, a CT scan, a bone scan, and a consultation with Dr. Madan, a specialist in recurrent prostate cancer who's leading the study and seems like a great guy...very down-to-earth and totally without airs.

My bloodwork showed a slight increase in PSA (after three months of trending downward) and a very high testosterone count for a guy my age. That's not good because testosterone feeds prostate cancer cells...but it is what it is.

The CAT scan was negative for indications of prostate cancer but showed "incidental" findings of a couple small abnormal spots in the liver, which the doc didn't seem too worried about, and a suspicious "nodule" in the thyroid, which he deemed unrelated to prostate cancer but needing to be checked out by an endocrinologist.

The bone scan itself came back entirely negative except for one tiny spot on the ribs, which the doc didn't seem super worried about. He said "spots" on the ribs are ambiguous in significance and typically not a big deal.

Oh well, it would have been great if everything came back totally clean, but at my age, it's not surprising to find this or that when they flood you with sophisticated tests.

As for prostate cancer, he said malignant cells are clearly in my blood, but he didn't see the necessity of rushing into life-altering treatment. I said, doc, we are very much on the same page with regard to that mindset.

Bottom line: all things being equal, I'll be alive and kicking this Christmas...and very likely the Christmas after that as well. After that, who knows...except In the end, I will die. Maybe of prostate cancer. Maybe of something else. But in the end we're all going to die of something...

Ten years ago I was also evaluated for a study at the NCI with Dr M as the lead. He was super nice to me and willing to take the time to explain his study protocol. It turned out I didn't quite make the selection criteria, so I didn't participate in his study.

PS: I will repeat that an Axumin scan might give insight into the source of your PSA results.

Post Edited (Sr Sailor) : 11/29/2023 9:13:06 AM (GMT-8)

I have a nodule on one thyroid (I can feel it) and after a couple of neutral ultrasounds, finally had a biopsy to end my concerns. It was cystic in nature and not cancer in any manner. Think positive.

FormerMarine, I have nothing to add to what others have said. Though as a former sailor with a year on the ground in RVN, I Corps, Marine country, in '68 I absolutely love and respect US Marines. I was a Gleason 7 22 years ago. Never cured, but still here. As a sailor I probably can't offer a semper fi, but I have your back as a shipmate.
Jim

Marine, all I can say is you have a heck of an interesting story. I have scans coming up on Jan 9th, and after that I plan to give a summary of my entire "recurrence" experience. But, I will say this now, since it sort of relates to your story. I think we both may have dodged a bullet of useless radiation. You said " On the one hand, she said, radiation was the only shot at curative treatment. On the other hand, the chances of the disease being entirely confined to the radiation field in the prostate bed were questionable at best. Plus both the PSMA and the MRI had been negative......... I don't see that radiation is in the equation either way ".

As my PSA slowly increased over 8 years, my scans( usual scans done locally, plus a couple of Auxumin which I had to travel 90 miles to get) continued to show nothing, (no PSMA scan so far). My docs recommended RT any way, because (according to 3 different docs) the odds were 3 out of 4 that the rising PSA was coming from my prostate bed. But, I kept hesitating, since I had a positive margin + SV+ after surgery. I wanted to know how they knew they would be radiating the correct spot. Since even auxumin scans could find nothing, how did we know it was not just dozens of tiny mets scattered all over, in which case RT would be of minimum or zero benefit. Also, I was sort of hoping for something to show up somewhere which we could spot radiate if needed.

Well, lo and behold, 8 years after my surgery, around TG 21, but just a few months after the last auxumin scan showing nothing despite rising PSA, the normal(done here locally), less sensitive bone and CT scans showed wide spread mets, EVERYWHERE EXCEPT my prostate bed! A couple of larger ones and lots of tiny ones. I went straight to anti testosterone treatment, and have been doing fantastic(except for the usual drug and no testosterone related SEs) for 2 years now. The 2.25 year(they got delayed) post mets January scans will give more needed info, but the 1 year scans around TG 22 were very much improved. Point is, my docs agree that if I had had my prostate bed radiated, it would have done no good, as the horse had been out of the barn since surgery back in Feb 2014, which had left nothing behind in my prostate bed. But the surgery did not help with the tiny trouble makers which were already running around out in my system, nor would RT have done. If RT was not going to help me, I am glad I avoided it. Sounds like the same applies to you. Even if a source of your rising PSA can finally be found. Good luck!
Bill