Why not start therapy the moment you know you have PC?

[bglendi53]

I've often wondering why know hormone therapy was given until I blew my PSA out of the water 14 weeks after the Radical Prostatectomy.

1) I found out I had cancer in later Feb 2020

2) I met with a urologist/surgeon on March 13, he recommended Robotic

3) I meet with the Robotic Surgeon on March 30th

4) Surgery was on April 28th, told I still have some cancer a week later

5) Fist PSA test on August 3rd was 52

6) Second PSA test on August 10th was 67

7) Third PSA test on August 24th was 165, along with another bone scan at CT scans...Result Bone Mets, Met with an MO the very next day

I won't go into the rest of the journey but why not start some kind of mild hormone therapy as either as soon as you know you have cancer, or certainly after they tell you you still have cancer a week after the surgery. Of course we all get the same old story probably from the surgeon, " I'm pretty confident I got it all". Yea right.

[Tall_Allen]

Although it serves no purpose to rehash it now, it seems they did not give you a full work-up for distant metastases at the start. They might have spared you the surgery.

[bglendi53 in reply to Tall_Allen]

Because my Gleason score was 9 and my grade was 5, they pushed surgery. I should have mentioned that I had a bone scan and 2 CT scans on March 25th, everything came back clean, no mets. But I'll never know if the mets came before or after the surgery and April 28th. Keep in mind this was right at the beginning of COVID so that may have had something to do with not getting the surgery for another month between the scans and the surgery date. Or, I just have bad luck. Or both.

[noahware in reply to bglendi53]

" I'll never know if the mets came before or after the surgery "

You can rest assured, you had the mets before... it's just that they were below the threshold for detection (with the methods most commonly used).

PC usually has a long and slow development relative to other cancers. The primary tumor has shed cells into the bloodstream well before the tumor is clinically significant. The question is, will those straying cell develop into micro-mets that then develop into clinically significant mets? And how long might that take? By all accounts it is a years-long process, if it happens at all, and not a months-long one.

Some docs (but NEVER a surgeon) do indeed believe in the pursuit of systemic treatment right from the get-go, even in the absence of detectable mets, with a higher Gleason like yours. That would be an MO. A urologist/surgeon will always want to remove the primary... it's what pays the bills.

[spw1 in reply to bglendi53]

Given this profile, I am surprised that you did not start with hormone treatment anyway at diagnosis. My husband's urologist was similar. At 50 PSA ordered a biopsy which took 3-4 weeks to send results back. Then ordered scans saying that he could do nothing until he had the scans and avoided giving an ADT injection or starting Casodex, and then saw the mets and asked 'Did I give you an injection the last time?' He had already wasted almost a year of monitoring PSA growth without ordering a biopsy because he believed that PCa was a slowest growing cancer and nothing to worry about even if my husband had cancer. My husband's cancer is pretty fast growing and we have been on a rollercoaster since of treatments. I started to read up and not trust the specialist alone because of that experience. We got much better advice since we started seeing oncologists.

[Hidden in reply to bglendi53]

Those scans aren't sensitive and not very useful for picking up mets that aren't dramatic.

[bglendi53 in reply to Hidden]

And of course that was before a PSMA-Pet was FDA approved, so I had that going for me too.

[Magnus1964]

When you say you found out you had Pca in February, did you have a biopsy, scans? I do think your doctors missed the mark. You should have had a scan to determine if you had distant metastasis.

[bglendi53 in reply to Magnus1964]

I live in a small town with one urologist. I first went to that urologist in October 2019 after a routine PSA came back at 5.3 ( which by the way my doctors office never checked me for 3-4 years previous. So from October to January I had a couple more PSA tests until I finally hit 8.4 on January 28th or so. Then I got the traditional biopsy with ultrasound. I asked this urologist "shouldn't you do this with an MRI" and he said no, they are no better than the ultrasound. I believed him, and he diagnosed me with Advanced PC with Gleason 9 on February 26th. In retrospect, I should have got out of town to a bigger hospital, but my mother was actually dying of stomach cancer, and I didn't think of myself as much as I should have. She died on March 8th. I think there are a lot of people who let me down, but how can one be sure.

[Magnus1964 in reply to bglendi53]

I am truly sorry for your loss. My situation at diagnosis was similar. I had a urologist who didn't bother with a PSA for a year. Then before I knew it I was in the big city for surgery. I was then diagnosed with stag 4 Pca. Needless t say I fired that urologist. Patients need to do there own reading and research. Doctors make too many mistakes.

[Jac_J in reply to Magnus1964]

'I fired that urologist'. You savage beast ;). What if he cant feed his family anymore?

[Seasid in reply to Magnus1964]

i agree

[Muffin2019 in reply to bglendi53]

My PSA went from 2.4, then 5.4, then 7.9 over a span of years but the doctor never did a DRE until I had symptoms then it hit 156.6 with Gleason 9 and 10 and spread to three places in the bones. I live in a large city with a cancer center but he dropped the ball by not insisting on more tests, depends on the doctor.

[bglendi53 in reply to Muffin2019]

That sucks man, hope you are doing well.

[Hidden in reply to bglendi53]

I am curious -- did your primary care doctor ever perform a DRE on you? How about your urologist? I had to nag my primary care doctor to do that; it is what got me sent immediately for a biopsy which was gleason 8 positive.

[bglendi53 in reply to Hidden]

Yea that's another thing. I had a female PA and not an actual doctor in my home town and I swear they don't want to be bothered with DRE on men. She only did me once in four years and honestly, I don't think she'd know what to feel for anyway. You'd be better off going to and experienced escort.

[Hidden in reply to bglendi53]

I'd call that neglect but a DRE is so awkward and fraught that I could understand her reluctance. Good medical people do the right thing, awkward or not. She didn't do the right thing. Too many don't. I had a great doctor who included that fickle finger test in every annual physical starting in my mid 40's. I had to change doctors with a change in insurance so it was a different primary care doctor who performed the winning (losing?) DRE that got me sent to a urologist. Your story also illustrates the bad luck when you are stuck in a modest home town lacking in medical care. My brother is in that situation.

[bglendi53 in reply to Hidden]

I'm not a big fan of insurance companies, but if they were proactive instead of reactive, they would demand that the DRE would be preformed and a PSA test done on all men starting at 40, or they don't pay the doctors office for the yearly physical. They promote women to get mamograms starting at 40, so why not men.

[bglendi53]

Makes you wonder just how much they care sometimes doesn't it?

[ARIES29]

I have fired two urologists & one MO so far & I wish I would have found a good MO from the start, it would have saved time & given me extra years.

[Tony666]

You are absolutely right. I am part of an NIH study where if you have a high Gleason but no evidence it is outside of the prostate they give you 6 months of intensive ADT BEFORE surgery. The principle is the intensive ADT mops up any micro cells that have escaped (since with high Gleason it is likely that some has escaped even if no evidence) while the surgery takes care of the mother ship. For me, I was Gleason 9. Now 2 years after surgery psa is undetectable. It is not soc now but I bet it will be soon.

One caveat. It has to be intensive ADT (ADT plus newer antagonists). Past studies have shown that 6 months of regular ADT before surgery isn’t enough to make a difference.

[bglendi53 in reply to Tony666]

I guess the news travels slowly to some of these places.

[Dlanghorne]

Started with biopsy in Dec 2018....had some gleason 10's!Wanted to be aggressive and had Robotic Jan 7, 2019.

Removed Prostate and 19 lymph nodes (no obvious lymph issues noted)

watched PSA which rose to .6 by Jun. got second opinion at Cleveland Clinic

and they gave me a Lupron shot that day. Returned to my surgeon/oncologist who

recommended adding Zytiga and Prednisone to the Lupron. Have been on Lupron, Zytiga, and prednisone since. Also have a MO in Florida (I am a snowbird) who was at Moffitt before.

Current PSA is undetectable. Get tested every month. Both Docs want to do Provenge

with ANY rise in PSA. So, I am just hanging in and testing every month and waiting to the next event. Have had multiple scans in past with no results but may get one this year after talking to Doc in August??

Sideline....Incontinence was very bad after surgery ...went 3 years with 5-6 pads per day.

Got artificial sphincter in Dec 2021 and life is pretty normal with 1 small pad per day!

My personal recommendation is to always act fast and strong....do not wait as PC is a nasty disease!

[bglendi53 in reply to Dlanghorne]

I go to the Cleveland Clinic as well, that's where I had the surgery. I'm more dissapointed in the surgeon than the oncologists, it seems like they have to clean up what he should have attended to. Of course that surgeon is gone now.

My MO just started me on Zytiga July 1, along with the Lupron. Before that I was on Erleada for the first 12 months with the Lupron, and we tried Xofigo for three months but the PSA just continued to rise, even though the bones cans didn't show many new lessions. My PSA was 33 on June 1st and is now down to 24 after one month of Zytiga, hopefully that trend continues.

[MateoBeach]

Other than the Gleason 9, you had negative initial scans and PSA not terribly high. So reasonable to expect that RP surgery had a 80+%chance of providing definitive cure. Now we know that you were already metastatic even with initially negative scans. ADT plus AR drugs certainly slow growth and progression and prolong OS. But I know of no evidence indicating that they can cure, kill all of the cancer, even if used early. Yes, they should have been started because of the Gleason 9, but I don’t think you actually lost an opportunity for cure, just to slow progression earlier. So no need to lament it too much. Just go forward with best treatment choices and support. Have you discussed and considered a round of early chemotherapy for de novo metastatic PC?

These are just my opinions, not judgements.

[CAMPSOUPS in reply to MateoBeach]

I agree. There is some unadulterated common sense born from medical knowledge and a reason not to live in the past.

[noahware in reply to MateoBeach]

A quick thought on the "80+% chance of providing definitive cure" here: at the time of RP, just as we cannot know (until later) which men already have micro-mets that will develop into full-blown metastatic disease in spite of RP, we cannot know (ever!) which men have tumors that are never destined to develop into full-blown metastatic disease even if the prostate is left intact. Can we really say a man is "cured" of a life-threatening disease when the disease would never have threatened his life?

So after RP we don't truly have only the two groups, of 80% "cured" men and 20% "not cured" men. Rather we have three groups: 1) the 20% "not cured" men, and 2) the "cured" men who needed cure and got it, and 3) men who never needed a cure but underwent a precautionary removal of the prostate anyway. The latter two groups together comprise that 80%.

Realize, the man who had an indolent cancer that would never kill him, but still gets an RP and dies of surgical complications a week later... he is counted as "cured!"

I think we have come a long way since the 1990s in keeping fewer "men who never needed a cure" from getting a surgery that they may not need. But as long as men follow the instinct of "get that thing out of me!" and urologist surgeons follow... well, follow the money... there will still be men who get needlessly "cured" instead of just remaining on AS and discovering their PC was going nowhere in a hurry.

[bglendi53 in reply to MateoBeach]

My main point was to ask why they don't try at least something while you wait 15 weeks to get your first PSA test after surgery. Something to at least weaken it and slow it down.

According to my MO, once you're metastatic, there is no cure, just treatment. My MO also said that my next option might have to be to ad some chemo.

[Bowmaster]

I had my prostate taken out 2002 and for five years my PSA was -0 on the fifth year the psa came back and has been going up steady ever since . That was done in Canada . Now i live in Bulgaria and my psa is at 40 two weeks ago . Went for a scan on my bones and there is no cancer in the bones . I have never taken any meds or hormon therapy and the doctors keep on telling me not to worry because many years have past since the surgery . I am very worried now and don't know what to do . Any help from anyone ? Thanks and be safe .

[bglendi53 in reply to Bowmaster]

Firsts, see if you can get a second opinion. Second, request a PSMA-Pet scan which will be much more sensitive that the typical bone scan.

[Seasid in reply to Bowmaster]

i would request ADT. Your PSA is high.

after starting ADT your PSA should drop.

[ShipModeler]

My GP ran my blood for my annual physical. PSA came back at 8.1. a week later I was retested. 8.5. The following week I was being seen by a Urologist. He backdoored me and determined I had suspicious lesions on my prostate. Within a few days I was biopsied. As soon as the results were reported I was called and instructed to meet with an Oncologist the following week. The Oncologist reviewed my biopsy results and gave me a Lupron injection. This was followed by an MRI and PSMA. Once the scans were reported my case was submitted to the hospital Cancer Board. I started EBRT. In my case I cannot imagine how my team could have acted any faster. My PSA has been .04 since completing the rad treatments. My opinion is the aggressiveness of treatment is predicated on the caregivers compassion.

[groundhogy]

I also wonder the same.On the desk with your positive biopsy results should also be a shot of lupron.

Hi, you have cancer, now bend over.