Just diagnosed Gleason 3+3 AS? - Prostate Cancer N...

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Just diagnosed Gleason 3+3 AS?

cspat profile image
17 Replies

Hi everyone !

I’m 69 years old snd active in good health, wslk snd go to the gym 3x a week.

My psa came in high in february(4.8)

It had been 3.4 a year and a half prior

A nurse left a message in february about the high psa which I didnt get!

I found out about it in september

A urologist repeated the psa and it dropped slightly to 4.5 . I saw an oncologist yesterday snd his advice was AS. He repeated the psa again yesterday but received the results this morning and the psa went up slightly to 5.1

My main question I have is does this slight elevation change in psa the AS advice?

Also, what’s the variation of a psa?

The oncologist told me 4.5 and 4.8 were about the same and said it had to do with the calibration of the test

I’m leaning toward AS and have scheduled another consultation with MSK for January and would end up using them

Any help would be appreciated

Thanks!

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cspat
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17 Replies
Tall_Allen profile image
Tall_Allen

PSA increase is not a valid reason for coming off AS - only grade progression.

Behfar Edhaie at MSK is excellent for AS.

cspat profile image
cspat in reply toTall_Allen

Tad-Allen

Thanks for the information!

JVARA profile image
JVARA

Have you had a 3t mri?

cspat profile image
cspat in reply toJVARA

jvara

I did have a 3T mri that was clean

The rectal exam was also okay

PTvsPC profile image
PTvsPC

It's a tricky situation. I was diagnosed nearly 8 years ago with 3+3 as well. I went on AS, although my urologist, a surgeon, said at this stage, it's a personal choice. Some men can't stand the thought of walking around with cancer in their body. Others want to hold off on treatment, especially if it appears it's only non-aggressive cancer. Some doctors have called for taking 3+3 off the "cancer list" stating that it's just not going to progress in a meaningful way that could put one's life at risk, so why worry men unnecessarily? (Personally, I disagree with that line of thinking.)

But here's the rub. They FOUND 3+3 in my prostate and didn't find any 4. Does that mean I didn't have it?

My uro at the time told me he could "cure" me with surgery and then I could get on with my life. I chose AS. Two years ago, some Gleason 4 started to appear, although it was less than 5%. My uro said I could still make a good case for AS considering my healthy lifestyle and because I'm staying on top of checkups - MRIs, biopsies, PSA tests, DREs, etc.

My most recent biopsy showed a significant increase in Gleason 4. Instead of less than 5% in one core, now it's more than 20% in two cores. Additionally, there is suspicion of extra prostatic extension (EPE). I have a PSMA PET scan scheduled for mid January.

In hindsight, did I err by not having surgery or radiation right away? (I don't think so.) But an argument can be made either way. I lived the last 8 years with zero side effects from my cancer, but now I'm faced with the possibility of more side effects from treatment, or worse, metastasis.

I guess what I'm saying is that there's no way to know what "the right" thing to do is because cancer is unpredictable.

For someone in your position, there's the real possibility that novel, effective treatments will come in the not so distant future and with little or no side effects. Are you OK with waiting knowing it's possible you might have some Gleason 4 in hiding?

One other thing to consider: my lesion is at the very edge of my prostate right near the left nerve bundle. The one thing I might have considered in hindsight is that if the lesion then was not as close to the edge, a surgery likely would have spared both sets of bundles.

One of my clients who's 25 years my senior, had surgery about 15 years ago. He had 3+3, but decided he just wanted to be done with it. His surgeon was able to spare both nerve bundles and put him back together with no side effects at all. Now, I think it's really unusual, but it partly depends on the skill of the surgeon and where the lesion(s) are located in the prostate.

Also, typically, surgery provides definitive answers post-op on whether the cancer was confined only the prostate or escaped.

I'm not pushing for surgery or any particular treatment for you. I'm just highlighting some points of view about it. Personally, I do NOT want surgery because I know that I will lose the left nerve bundle for sure. There may very well be nerve damage on the right side as well - just no way to know for sure until they get in there.

I'm doing my own research to determine what the best option will be for me, although I need more information which I will get from the PSMA PET scan. That wasn't part of Standard Of Care (SOC) when I was diagnosed. So, you're already ahead of the game.

What's right around the corner??

Try to get some second opinions. Also, not everyone will agree with me on this, but I recommend utilizing ChatGPT to gain clarity on some possible best approaches for your situation. It's been a huge help to me.

Lastly, this forum is super helpful. I've learned a lot from reading posts - things I never would have even considered such as getting a second opinion on the biopsy pathology report through Johns Hopkins... considered the authority on pathology reports.

Anyway, lots to think about and I hope you're able to choose what works best for you.

cspat profile image
cspat in reply toPTvsPC

PTvsPC

Thanks for your history. You’ve given me a lot to think about. I ‘ll inquire about the location vs the nerve bundles.

The oncologist rated the surgery as most dtadtic choice because of the side effects and mentioned the results from radiation were about the same

Did they fo genetic testing on you when you started AS?

So you’re looking at radiation at a minimum? I wish you well ,

PTvsPC profile image
PTvsPC in reply tocspat

Yes, they did genomic testing on the cancer to see what the grade is, etc. I also had genetic testing to see if I have a predisposition for cancer and it came back negative.

As for my treatment, my choices as of now are surgery, radiation or focal therapy. I'll have the PET scan mid January and if it's negative, then all choices are still on the table. If there's metastasis, then I'm not sure what the best course will be. That'll be discussed after the results are known.

Boomer57inVA profile image
Boomer57inVA

I’m 67 but in a similar situation. After the elevated PSA my PCP referred me to a urologist, who did a DRE. Based on that, I had a prostate biopsy 4.55 (up from 3.54 in 2023 and 3.83 in 2022).

The variation between 22&23 makes me wonder if there’s perhaps some other variable that effects the score?

cspat profile image
cspat in reply toBoomer57inVA

Boomer57inVA

I thought the same. I wondered about the repeatability of the PSA test, I've been looking for any data online to shed light on that.

PTvsPC profile image
PTvsPC in reply toBoomer57inVA

PSA tests are overall a poor indicator of cancer status. It can be a good indicator if the PSA level is consistently rising up over multiple tests. Bouncing around doesn't say much. Also, the baseline score doesn't necessarily say much. My PSA was 0.5 when I was diagnosed and today, 8 years later, it's 0.7. I also have a very small prostate so it probably doesn't generate a lot of PSA. In my case, the PSA alone provides no clues about my cancer. I have G3+4 with 20% G4 in two cores.

JimsWife1 profile image
JimsWife1

My husband has been a G6 on AS for four years. His PSA stays consistent around 11 due to BPH. He has 3T MRI yearly, thankfully with no visible lesions. So in his case, the PSA number doesn’t determine further treatment. It’s important to get a second opinion on your biopsy slides to confirm a true G6.

cspat profile image
cspat in reply toJimsWife1

Jimswife1

Thanks for the headsup . I'll inquire about that when I see the 2nd oncologist next month

NanoMRI profile image
NanoMRI

My initial Gleason opinion was 3+3. Second and third opinions 3+4. Final after RP, 4+3, with spread. All the best!

cspat profile image
cspat in reply toNanoMRI

NanoMRI

Good to know.

thanks!

cscmetsfacil profile image
cscmetsfacil

You are doing many things right - getting scans, checking PSA, etc, True 3+3 almost never metastasizes but once you see some 4 you are right to take some action. Urologists are surgeons and tend to suggest surgery. Be sure to talk with at least 1 Rad Onc. There are now many options for highly effecting radiation therapy (RT) that are as effective and far less invasive that surgery (RP) You should also get a Decipher test to understand genetic and other factors that could predispose you to more aggressive cancer. As to PSA, yes it naturally fluctuates a bit. Testing more frequently (quarterly) is helpful during AS so you can see trends, not just individual readings. It's also helpful to know the size of you prostate and whether it is enlarging. The bigger the prostate, the more PSA it produces. The ration between PSA and prostate size is called PSA Density. A 30cc prostate should generate PSA 3 or les, 40cc's- 4 or less (general rule of cc's decided by 10. Finally, so much depends on where you are, what treatments and access to top doctors you have. This is the time to get multiple consultations re options. Also, I strongly suggest checking our "PCRI"''s website - the Prostate Cancer Research Institute. PCRI.org They have an excellent on-line staging guide and a great library of videos. Finally, join a prostate cancer support group. I got more useful information in my first couple support group meetings than I had gotten from multiple meetings with specialist who focused on what they do rather than me as an individual whole person.

jethrotullag profile image
jethrotullag

AS is a very reasonable choice. Almost exactly my situation. AS for 1 year now

cspat profile image
cspat in reply tojethrotullag

jethrotullag

Thanks for the input

I’m leaning that way but want to wait until the 2nsd consult

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