Low psa, but have pca

[bubularich]

Is there anyone else out there who had a normal PSA,but has prostate cancer. After MRI showing a lesion and in biopsy they see two spots of Gleason 6 cancer, one in each side of prostate. Even though it's a Gleason 6, urologist at top teaching hospital in Philadelphia says I need a radical prostatectomy soon because the PSA is low, (0.7), he says this means the cancer could be clone or rebel cancer cells and they don't give off the antigen to elevate the PSA, but they could be aggressive. I just got this news a day ago so I'm freaking out. Is anyone else had the situation? I'm going to get second and third opinions, and have another radiologist interpret the biopsy. Thanks

[Hidden]

curious what prompted the mRI then biopsy. I would ask for a Decipher to be done on the biopsy slice, or send it to Dr Epstein or both preferably. I would not rely on might. Might be nothing

[bubularich in reply to Hidden]

Thanks for your reply. I've been having what seemed like BPH symptoms for a year and urologist recently found abnormal prostate from DRE. Because of that he sent me for the MRI and then biopsy. He did order a decipher test and I am going to have the biopsy slides sent to Hopkins for another pathologist report as well. My insurance doesn't cover anybody outside of the Philadelphia area so I may have to pay out of pocket to Hopkins. But I'm willing to do that, no big deal, it's only money!

[Hidden in reply to bubularich]

Sometimes doctors just want it gone. So there isn't ever a chance is progresses. Whereas you may want to wait awhile and avoid some of the side effects. so this additional testing should help in that regard. Please keep us updated.

[Tall_Allen]

Send your biopsy results to Jonathan Epstein at Johns Hopkins. He is the top pathologist in the world.:

pathology.jhu.edu/patient-c...

[bubularich in reply to Tall_Allen]

Thanks, will do!

[Bethpage in reply to Tall_Allen]

Dr. Epstein is on indefinite leave. No one will say when/if he will return. This is as of mid May. Big loss to everyone.

[GMorz]

my psa was low at 1.4 at age 52. Gleeson 7

[bubularich in reply to GMorz]

What was the outcome of your treatment? Did you need a radical prostatectomy?

[GMorz in reply to bubularich]

yes had RP. No further treatment yet however Psa siting around 0.02 2 years post RP so still carful monitoring

[bubularich in reply to GMorz]

thanks for your reply. If you don't mind, can you tell me about the urinary and sexual side effects and how long those took to come back? If you'd rather email me privately I'll send you my email.

[GMorz in reply to bubularich]

only very min incontinence for 2 weeks . No issues beyond this at all. No problem at all with ED.

[GMorz in reply to GMorz]

I am in australia

[bubularich in reply to GMorz]

Thank you.

[bubularich in reply to GMorz]

Was it a laparoscopic robotic RP? My other question is whether you had BPH symptoms prior to the cancer. I have had moderate BPH for a year before my diagnosis.

[cesces in reply to bubularich]

"urinary and sexual side effects "

If you have aggressive small cell prostate cancer that is the least of your concerns.

Go do some research on Tall_Allens blogging site.

[Michael-F]

Hi bubularich! Very sorry for your PCa Dx and very thankful for your early detection. I was 59, asymptomatic, PSA 2.9, at Dx. Radical prostatectomy pathology = Stage III PCa, Gleason (3+4).

The key fact to know is: “Exactly what are you harboring?” Biopsy samples may or may not reveal your exact status. PCa tends to be a heterogeneous malignancy. IMO, having Decipher + a 2nd opinion from JH is wise. Then have an open discussion with your expert URO MD about which good options are on the table for you. I would ask the following:

- Was neuroendocrine PCa detected?

- What do my Decipher results indicate?

- Am I a candidate for Active Surveillance?

- If treatment is indicated, what are my best options? & Why?

Best wishes for a long term solution and optimal outcome.

Michae F

[bubularich in reply to Michael-F]

Thanks so much for your response. I'm still kind of shell-shocked by my diagnosis because I thought it would be for sure an active surveillance and was quite surprised when the doctor said his recommendation was to have a radical prostatectomy. But I am getting multiple opinions and I'm going to ask a lot of questions like you suggested. I do feel supported by all the feedback I'm getting on this forum. Thanks again!

[doc1947g in reply to bubularich]

You should also see a Radio-Oncologist.

Urologist make their money from surgery, needed or not!!!

I was a Gleason 7(4+3) and I refused the surgery.

So they put me on VMAT-RT + ADT(Casodex 30 days) + Lupron Depot 45mg/24weeks.

After 3 years my PSA went from 20.3 μg/L down to 0.02 μg/L and Testosterone from 438.04ng/dL down to 60.57 ng/dL 🙈🙉🙊.

Good luck!!!

[bubularich in reply to doc1947g]

If you don't mind me asking, following your radical prostatectomy, did you have urinary and/or sexual side effects that were long lasting? I know it sounds a bit vain but the idea of being incontinent and not being able to have intercourse brings me a lot of fear. Obviously if this will save my life I will do it. But I am definitely getting second and third opinions on various treatments before going into surgery.Thanks.

[doc1947g in reply to bubularich]

I DID NOT HAD a prostatectomy,

[bubularich in reply to doc1947g]

Sorry, after rereading your post I see that you did not have a radical prostatectomy. Thanks.

[cesces in reply to Michael-F]

If he has neuroendocrine PCa, the last thing he needs is active surveillance

[bubularich]

Thanks, will do!

[Hidden]

occasionally. Not commonly, but surgery can transport cancer to other parts of thr body. My friend just had an RP and his PSA started going up. Turns out there was a spot in the rectum. Which is where they take it out. Of course they say that’s not how he got that. But I wonder. There is some evidence that it occasionally happens which makes sense if you think on a microscopic level what a surgical cut looks like. But, I don’t want to alarm you. 99.9% of RPs don’t do that we don’t THINK. And you don’t even know yet if you are going to treat this Gleason 6

[John42]

If Epstein is not available, The Active Survellor website said that the next best choice is a doctor that used to work with Epstein.

Here’s the contact information for

Dr. Ming Zhou, Anatomic Pathology Department of Pathology and Laboratory Medicine, Ziskind 5, Tufts Medical Center, 800 Washington Street, Box 802, Boston MA 02111

Office: 617-636-5829 Fax: [phone]

He charges $250 per case. Epstein charged $400.

[18BlueWing]

I had been monitoring my PSA since I was 50. In my early 60s I noticed that my PSA was creeping up. When it went from 1.9 to 2.8 I asked to see a urologist. The urologist was dismissive because my PSA was under 4. I insisted that he do a digital rectal exam. Upon completion of the DRE, his whole affect changed. He felt something on exam and now wanted to do a biopsy asap. After the biopsy revealed adenocarcinoma in 9 of 12 cores, we decided to do RP. Pathology said Gleason 9 with no spread in the margins. Unfortunately, my PSA never went to undetectable. 1 year post-op I had salvage radiation to the prostate bed. Still PSA never went undetectable. After 18 months of active surveillance, my PSA rose to 6 and then 13 four weeks later and a PSMA PET scan revealed 2 tumors...metastatic disease. I started ADT with Eligard as well as Zytiga with Prednisone. PSA now undetectable. One of the tumors is gone and the other shrunk to half its size. SBRT to be given in 5 doses over 5 days in the next couple of weeks in an attempt to kill whatever PCa remains. That's my story...low PSAs until 1 year ago..

My advice is to make sure that your team includes a urologist, a medical oncologist and a radiation oncologist. Together they will offer you a balanced analysis and the best chance at living your best life.

[bubularich in reply to 18BlueWing]

Thanks for your story. It's very helpful to have all this information from everyone. I really appreciate it

[45RPM]

My story is very similar to yours, you can see details in my profile. LMK if you have any questions, glad to share my experience. Had never heard of this low PSA relationship to cancer aggressiveness - i had psa 0.5 for most of my life. Please keep us informed as you learn more. Great advice here on this site - most important is to get informed on your cancer and all possible treatment options and side effects before you jump. Good luck bubu!

[39cancer]

Was dx with Gleason 9 when I was 39. T3a n1m0. 4 positive nodes. PSA was like 1.5. Had rp, radiation, ADT x 2 years. Still alive and still undetectable.

[cesces]

"but they could be aggressive. "

Makes sense.

Doesn't hurt to get some second opinions

Make sure to talk to both a medical oncologist and a radiation oncologist.

You need to consider radiation treatment

If it is aggressive small cell prostate cancer you need to take action quickly, even while seeking out second opinions.

[Victor93]

If you decide to have it taken out, you have an outstanding doctor in the Philly area: David McGinnis in Bryn Mawr . He pioneered robotic surgery for RP. My brother went to him 8 years ago with excellent results. We don’t live in PA but still contacted this doctor last year to see if he could do the same for my husband. He spent nearly 45 minutes with us on the phone, extremely thorough, great human being. Turned out he agreed with our urologist that my husband wasn’t a candidate for the surgery, so we went the radiation route.

[bubularich in reply to Victor93]

Thanks Victor for the info. I'll check it out.