Has anyone had PC that is very aggressive and a very low low PSA?

My plan is different from over the counter advantage plans. It is from state of Illinois retired teachers, so it has many benefits and very few exclusions.

I tried four patient portals but couldn’t locate the precise wording so I’m going from memory with my wife’s help.
…metastatic pc, hormone sensitive, poorly differentiated, PSA 17 at time of treatment commencement (3 months before starting chemotherapy). Not sure about Mets and endocrine comments. Gleason was 4-5 by university hospital and 5-5 (10) by John’s Hopkins where we got a second opinion (before contacting Mayo).
They talked about Carboplatin but only if I wasn’t responsive to treatment without it.

Six rounds of Docetaxel 3 weeks apart. Twenty radiation fractions to pelvic area and 15 to hilar lymph node (chest). Fatigue from chemo and some temporary loss of taste. (Berries tasted metallic for a few days). Radiation only side effect was a bought of diarrhea after the last dose. Very few side effect other than fatigue.
Lupron has been much more problematic.

For what it’s worth…my insurance refused the choline 11 PSMA PET scan. However, I was successful in appealing to the State of MI Dept of Insurance and Financial Services. Happy to discuss my insurance appeal lessons learned.

You didn’t say if you had a DNA test of your biopsy. If you have a jean fusion TMPRSS2ERG to ERG and you did not have BPH you are just like me and 20% of everybody with this type of prostate cancer. Mine started as an external cyst. Therefor no Increased PSA until it invades the prostate.

When I was diagnosed with PC, my PSA was 4.2. The reason I had biopsies was because my PSA doubled in one year. Also the digital rectal exam indicated there was something wrong. Two of the biopsies had Gleason scores of 9. PSA is still the best test going for us guys. And I don't hear anything more about the DRE but hey guys, why not? The rule of the thumb at that time was to look for doubling in one year or your PSA made a major change. Then, after having a RP, my PSA dropped to less than .04 and then five years later increased to .2. then watching it for three months, it increased to 1.1 so I turned myself into a Radiation Oncologist and after 39 radiation treatments was clear of cancer again. The bottom line is that you can't have a PSA without a prostate.

Just to add a very different experience…In 2008, my internist did a DRE as part of my annual physical (very fortunate he did this) and felt a nodule. My PSA was < 1.0. He sent me to a urologist who also felt the nodule but told me it wasn’t a concern with my low PSA . I insisted on a biopsy over his objections. He only took 3 biopsy samples because “I couldn’t possibly have prostate cancer with that PSA.” One was positive with a Gleason of 4+3. I had an RP at UCSF. Negative margins, final Gleason 4+4. My PSA was undetectable for 2 years and then began rising very slowly until it reached 0.2 in 2022. A PSMA showed a nodule in the prostate bed which was biopsied :Gleason 3+4. I am now taking Orgovyx and just completed 37 imrt treatments (limited to the prostate bed to minimize side effects because of pre existing conditions, at the cost of possibly not irradiating all the cancer), again at UCSF. My PSA is now undetectable but we won’t know the results until I’m off Orgovyx in September and then allow some time for my testosterone to return. Hope this helps someone. There is a significant percent of prostate cancer patients (10-20%) who have with very low PSA’s. Based on my experience, I am a strong advocate for the DRE as well as PSA…and for being an active patient.

sam60: my brother had a psa of 6 and his cancer had metastasized in January of this year. He had radiation with the mridian machine from viewray and is on Lupron injections which he wants to get off of because of his side effects. He was treated in NYC weill cornell.

It helped me to keep my PS undetected for 5 years. Yes side effect are tough but I am still here.

I too am of the opinion that DRE is the gold standard for detecting Prostate Cancer. My PSA was 2.4, yet my physician insisted I see a Urologist who after DRE promptly sent me for a biopsy that turned out 4+4 on the Gleason scale. Since then I am on Zoladex 10.8mg every three months, Abiraterone 1000mg every day and have finished 20 fractions of Tomotherapy. My latest PSA test came back 0.03.

Sounds like your doctor felt something suspicious during the DRE which led to the biopsy. And, like me, you were very lucky that a 4+4 Gleason cancer was discovered and you’re doing OK.

I would say the DRE plus PSA together are the gold standard. Most of the time, Prostate cancer is first detected by a PSA test and the DRE may be negative. But for a small but significant number of men like us, the PSA is relatively low but the DRE is positive.

Many so-called experts have come out against the DRE and even against the PSA for reasons I can’t understand. Neither test is expensive, presents risks, has side effects or is costly. Their main argument-they can lead to more invasive tests which may not be necessary. This could happen…but today there are other relatively non invasive tests which can help eliminate false positives before a biopsy is needed, so the argument that an elevated PSA or suspicious DRE leads straight to the operating room just doesn’t make sense.