Active surveillance....trending down

[cmaseo]

Hello all,

I'm a new member to the club and also been a "lurker" since the diagnosis of PCa was made.

My story, I'm a 42 year old African-American male. I went to my primary for a routine visit (8 months ago) and my PSA was elevated at 7.1. I then went to a Urologist, had and MRI - negative, no focal lesions and a repeat PSA 6. Due to the negative MRI and elevated PSA we decided to do a biopsy. Results 9 of 14 cores were positive, all Gleason 6. I recently repeated my PSA after 3 months and it is 5.5.

My plan with my Urologist is to continue following my PSA levels and if there's any uptrend then have RP.

For those who have or are currently going through active surveillance, are recommendations? Would you consider getting RP due to my age and biopsy results? I know each experience is unique.

Of course, knowing I have this inside of me is causing considerable reflection and anxiety so I felt it was time to reach out to others.

- C

[Magnus1964]

I was 46 at diagnosis, it's difficult to face surgery or radiation at that age. The usual treatment now is receive ADT then radiation.

[Tall_Allen]

I think you should reconsider your plan. You obviously have some prostatitis so your PSA will probably see-saw over time. In most AS protocols, they do not use PSA as a trigger - it is too unreliable. You might consider monitoring with Prostate Health Index (PHI) instead - it is less affected by inflammation.

Almost all AS protocols include a confirmation biopsy (usually mpMRI-targeted) within a year of diagnosis. The biopsy should include cores taken from the anterior (front) part of your prostate, which has higher prevalence in African-American men. Some believe that African-Americans should not do AS, but I know an African-American man who has been on it for about 5 years so far.

Age should not affect your decision.

[cmaseo in reply to Tall_Allen]

Thank you for the quick reply and information. It's my understanding that the PHI is a calculation using three blood tests, which provide the probability of find PCa on biopsy. So it's used in cases of men monitoring for potential PCa.

[Tall_Allen in reply to cmaseo]

It can also be used for active surveillance:

meetinglibrary.asco.org/rec...

[cmaseo in reply to Tall_Allen]

Thank you!

[dentaltwin in reply to Tall_Allen]

cmaseo doesn't say if any symptoms prompted the original PSA. Given his youth, PSA trajectory and lack of lesions on MRI, would you advise having his biopsy re-read? It is possible he has a family hx which would put him at especially high risk, but I'm thinking--given 9 of 14 cores were read as positive, wouldn't you have expected SOMETHING to show up on MRI?

[Tall_Allen in reply to dentaltwin]

Yes. Always a good idea to get a second opinion from Epstein. mpMRI doesn't show most GS 6 lesions, unless they're very big.

[dentaltwin in reply to Tall_Allen]

Thanks. I have absolutely no idea what guidelines the urologists are using for screening these days--we know the checkered history of the USPSTF in this regard.

[Tall_Allen in reply to dentaltwin]

USPSTF has basically adopted the AUA screening guidelines.

[dentaltwin in reply to Tall_Allen]

You mean--upgrading PSA from a D to a C recommendation for men 55 to 70?

[Tall_Allen in reply to dentaltwin]

Here are the AUA guidelines:

auanet.org/guidelines/prost...

Here are the USPSTF guidelines:

"For men aged 55 to 69 years, the decision to undergo periodic prostate-specific antigen (PSA)–based screening for prostate cancer should be an individual one. Before deciding whether to be screened, men should have an opportunity to discuss the potential benefits and harms of screening with their clinician and to incorporate their values and preferences in the decision. Screening offers a small potential benefit of reducing the chance of death from prostate cancer in some men. However, many men will experience potential harms of screening, including false-positive results that require additional testing and possible prostate biopsy; overdiagnosis and overtreatment; and treatment complications, such as incontinence and erectile dysfunction. In determining whether this service is appropriate in individual cases, patients and clinicians should consider the balance of benefits and harms on the basis of family history, race/ethnicity, comorbid medical conditions, patient values about the benefits and harms of screening and treatment-specific outcomes, and other health needs. Clinicians should not screen men who do not express a preference for screening."

uspreventiveservicestaskfor...

[cmaseo in reply to dentaltwin]

I was asymptomatic, my primary doc decided to get the PSA due to his history of diagnosing African American men with PCa under the age of 45. I don't have a family history, not in my immediate family.

My biopsy was performed at Memorial Sloan Kettering, which is pretty good I hear. But having it re-read isn't a horrible idea.

To help alleviate my concerns, I'm getting a genomic test performed of the biopsy to provide the level of aggressiveness and help aid in my decision making.

[dentaltwin in reply to cmaseo]

Fair enough. I know use of PSA for screening is controversial, and once it's high (esp. given your low-risk biopsy) it's tough to put the genie back in the bottle. I was treated last year at MSKCC--but I'm a lot older than you, my PSA was going in only 1 direction, have a strong family history, and my biopsy was intermediate risk.

[cmaseo in reply to dentaltwin]

I see, thank you for your input.

[ASAdvocate]

Nine positive cores is concerning, as a high load of Gleason 6 can often mean that a higher grade may be found on the next biopsy.

I recommend that you follow TA's advice and have a confirmatory biopsy. Also, switch to PHI instead of just PSA (a component of PHI).

I also suggest that you buy a copy of Dr. Mark Scholz' The Key to Prostate Cancer. He interviewed 30 prostate cancer experts, and presents their descriptions of the treatments that they offer.

Men today are choosing AS, surgery, and radiation in equal numbers. If you are considering treatment, be sure to research the various types of radiation therapy, and consult with some radiation oncologists.

[cmaseo in reply to ASAdvocate]

Thank you. Yes, I got Dr. Scholz' book, quite informative.

[wmcrgood]

I can't understand how you have a falling PSA level. I think eventually you will be back above 7.1 and will eventually have to have some type of surgery to kill or remove the Prostrate Gland. You are relatively young. Do you want to have that cancer in you til your 80? Looking back....I would have had it removed if I was in your shoes. I had Gleason 7....PSA 7.3....stage 2....at age 52. It's not all that bad...if you have a good surgeon.

[cmaseo in reply to wmcrgood]

yes, I feel the same. Although I did some serious dietary changes and included supplements, but I agree with you, I didn't expect the PSA to fall from 7.1 to 5.5, which further complicates my decision.

I don't want to be 80 with known cancer lurking, or a poorly treated cancer inside of me.