Post-Galleri test journey ...

I hesitated posting because almost all of you are dealing with more serious situations than I am, but hoping for some valuable input and want to share for others who may someday travel a similar path ...

I'm 51 and generally healthy. This all started with my mother-in-law's pancreatic cancer diagnosis three months ago today. We held her funeral yesterday. After her diagnosis I started looking for scans, etc that could detect cancer in general before being told to get your affairs in order and while you still had a fighting chance.

I came across the Galleri blood test which coincidently was offered through the same hospital group (Mercy) that my PCP is affiliated with. My wife (38), wife's father (77), wife's sister (36), and I all took the Galleri blood test. I expected a negative result and was already thinking about whether it was worth getting it done annually going forward at the price of $949.

You probably see where this is going. Out of my wife's family and me, I was the only one who was positive. Took my test just before Thanksgiving. Got the call 12/9/24 from Mercy Precision Medicine (MPM) of my positive result with two possible predicted origins. The first and most likely origin was prostate cancer. The second and less likely origin was "lymphoid lineage". They don't give you much more information than that. The bar graph printed on the test result showed prostate cancer origin likelihood was 4 bars out of 10 while lymphoid lineage was 1 bar out of 10. The only explanation provided was that, "The size of the bar under the CSO represents the match of the DNA methylation pattern to cancers of that tissue or organ. A longer bar reflects a better match ... The size of the bar does not represent the probability of having cancer. Two CSO predictions rarely indicate the presence of multiple primary cancers."

MPM is out of St Louis. I live and took the test in OKC. I only ever talked to PAs from MPM. The PAs were very kind and did a good job scheduling appointments but couldn't really answer medical or technical questions about the test results. They get direction from their three "medical directors" one of who is a urologist. I did not specifically ask to speak with one of their docs, but I got the impression that was not an option.

MPM did get me in for blood work the day after informing me of the results. PSA was 0.62. (My only previous PSA had been six months earlier and was 0.67.) I started thinking some sort of lymphoma was much more likely than prostate cancer. (My sister had non-Hodgkins large T cell lymphoma at about my age while my dad had prostate cancer several years older than I am now.) MPM scheduled me for a CT. Not a whole lot there other than a 4mm nodule on my left lung (recommended follow up CT in 6 months), a "mild prominent lymph node anterior to the GE junction, likely reactive", and some disc damage in my lower lumbar spine. MPM then got me in for a prostate MRI. Two lesions (1.0 and 0.6 cm) that were both scored PI-RADS 3. Prostate calculated volume was 24 cc with a PSA density of 0.03. I immediately wanted a biopsy. MPM got me in quickly to see a urologist.

Urologist seemed sharp and agreed to do the biopsy but said she wasn't real impressed with the Galleri test and doesn't usually biopsy PI-RADS 3 because there's only a 15% chance of malignancy. Unfortunately, our schedules didn't align well for a biopsy as quick as I wanted, and Mercy OKC only does trans-rectal prostate biopsies until they get the proper equipment. I was able to get into see the head of urology at OU's Stephenson Cancer for a trans-perineal biopsy on 1/21/25. Results came through via the app yesterday evening a couple of hours after my mother-in-law's funeral ended.

In some ways a confusing pathology report (8 samples comprising 17 cores), but luckily no cancer detected. The sample from the right posterior lateral area which comprised 2 tissue cores indicated "minute focus of high-grade prostatic intraepithelial neoplasia (HGPIN)" which I've discovered essentially means pre-cancerous cells. I believe follow-up biopsies will likely be needed down the road (probably a year from now).

While I was relieved, and if not for the Galleri test result would be much more relieved, I still feel like I am starting a journey just with a slower start than I had feared. Studies have indicated that the Galleri test usually only detects high-grade or late stage prostate cancer so I was very relieved that I do not appear to have either one of those. Although I have a low PSA, some rare, aggressive PC's (small cell & maybe others) do not produce elevated PSAs. I feel like that seems much less likely now but not 100% sure as biopsies sometimes miss cancers.

Follow-up office visit with OU urologist is scheduled 2/7/25. I am going to request a PSMA PET scan to confirm the negative biopsy although I expect push back from urologist and/or insurance. Trying to get into a friend's oncologist-hematologist for a different perspective and a GI doc for colonoscopy and endoscopy. (Never had either.) Have a history of ulcers and was in severe abdominal pain the night after the biopsy which I attribute to being given Toradol (a heavy duty NSAID) for pain management. (I don't take NSAIDS because of my ulcer history.)

My RBC count has been dropping slightly, particularly over the last 18 months, and is now in the below normal range (see below) which with the Galleri test and MRI results caused me to worry that cancer whatever the origin may have metastasized to bones. Now, I think it's more likely that I am experiencing some blood loss in my GI tract.

RBC:
3/3/17 - 4.62
6/9/23 - 4.47
6/11/24 - 4.27
12/10/24 - 4.19
1/10/25 - 4.12

A friend's wife is a new radiology oncologist in Kansas City and has been a good resource. She says Mayo is the best of the best. If surgery is needed, I plan to go to Mayo. Trying to decide whether to go there for follow up biopsies and/or scans. I'm not sure whether or not there is (1) much benefit in establishing care at Mayo at this stage, and (2) a significant difference in the scanning technology, radiology review, and/or the taking and pathology review of biopsy samples.

Well, that was a lot. Any thoughts are appreciated. Feeling a lot more positive now than I was 24 hours ago. Don't feel like I am on the clock as much as I did but still want to be vigilant without becoming obsessive.

After reading many posts on this forum over the past month I have a completely different perspective and appreciation for the seriousness of prostate cancer and the negative effects of its treatment. My thoughts and prayers are with you all and everyone battling this insidious disease. Keep up the good fight.