11 anniversaries since diagnosis of stage 4 prostate cancer

Posted by mccsjm @mccsjm, May 25 12:47am

Diagnosed at 63, I did not have the confidence at that time to believe I would live another 10 years. Yet, I just completed another follow-up visit in the past two weeks. My semiannual routine includes a blood draw for PSA and metabolic panel, followed by a visit to my oncologist's office. Given the many years of hormone therapy, they added a DEXA scan to check my bones.

Overall, they are happy with the results. PSA remains undetectable (might not be the most sensitive assay. My lipid levels remain elevated, so lipid-lowering medication may be inevitable in the near future, but it's not the end of the world. I hope my experience can encourage my fellow warriors. Living with prostate cancer is entirely achievable.

I also learned that the website for clinical trial matching that my oncologist pointed me to previously (inforeach.org) has added search for treatments recommended by clinical guidelines. It's quite intriguing as you can check if your treatment is consistent with the standard of care. Sharing this information for anyone who may want to check it out.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

AWESOME!! Thank you so much for sharing. I am one year into my journey with stage 4. This news is so very encouraging. This site continues to be so helpful to me and I thank all who share their stories on here. mccsjim, I hope you can understand how much this means to me and I wish the best on your journey. Best to all.

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Huge congrats! Certainly not an easy path to navigate and gives a lot of hope to others here.

Posting more info with what worked (and didn't) for you may also help readers. We have a need to read!!

Real data from real people is what we want.

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You brought up an interesting point about PSA. What is the lowest level of PSA detected by PSMA Pet scan which indicates cancer is still present, or recurrence? The current consensus is above 0.1 or 0.2. Some suggest it might be 0.5. Are there any recent studies or clinical experiences which indicate otherwise? Just inviting discussion.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

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What Stage 4 do you have? Stage 4A is contained within the pelvic region. I was diagnosed with Stage 4B metathesis throughout my body to my lymph nodes in my upper body - chest, neck , thorax etc.
Diagnosed in August, 2023. My prognosis is 50% survival to 5 to 7 years after diagnosis.

Does anybody else have Stage 4B?

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Congratulations and Happy Anniversary.
And thank you for posting today.
It is uplifting to hear some positive news and much appreciated.
Here's hoping and praying that you feel well and continue to do well in this battle.

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Congratulations. A Great Milestone!

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@sixto

What Stage 4 do you have? Stage 4A is contained within the pelvic region. I was diagnosed with Stage 4B metathesis throughout my body to my lymph nodes in my upper body - chest, neck , thorax etc.
Diagnosed in August, 2023. My prognosis is 50% survival to 5 to 7 years after diagnosis.

Does anybody else have Stage 4B?

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Apparently, there is a study conducted by Xtandi. This were randomly selected to include all different levels. Their conclusions is those who were given ADT + Xtandi had a recurrence rate of 10%. That would be somewhat at odds with your figure, which is possibly drawn from an older study. The science has made such progress some times the studies do not catch up. So do give you a warning in the footnote that the study may not be current etc etc.
The presumption here is if you have chemo on top, ie triplet treatment, the outlook would be even better.
At the end of the day, regardless of staging, it depends on your treatment and how well you respond to it. The best case is if the PSA falls by 90% in the first month, and < 0.1 within 4-6 months.
Some may have stage 3 but does not respond well. That may be more serious than stage 4 that responds well.
Also remember that recurrence does not necessarily mean terminal as far as PC is concerned.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

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I have stage 4 metastatic, bones and a lymph node , I'm not sure difference between 4a and 4b, and I probably don't want to know, lol, but this posting of 11 years is just so great. We all need a positive to grab hold off and this certainly does the trick for me. Best to all.

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@wellness100

Apparently, there is a study conducted by Xtandi. This were randomly selected to include all different levels. Their conclusions is those who were given ADT + Xtandi had a recurrence rate of 10%. That would be somewhat at odds with your figure, which is possibly drawn from an older study. The science has made such progress some times the studies do not catch up. So do give you a warning in the footnote that the study may not be current etc etc.
The presumption here is if you have chemo on top, ie triplet treatment, the outlook would be even better.
At the end of the day, regardless of staging, it depends on your treatment and how well you respond to it. The best case is if the PSA falls by 90% in the first month, and < 0.1 within 4-6 months.
Some may have stage 3 but does not respond well. That may be more serious than stage 4 that responds well.
Also remember that recurrence does not necessarily mean terminal as far as PC is concerned.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

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My apologies to @MCCSLM and congratulations to your achievement.
To wellness100:
History:
9/16/2023: prostrate removal robotic
10/9/2023: PSA 16.2 before first Eligard every 3 months
10/16/2023: commenced Zytiga with prednisone daily
11/17/2023: PSA 0.397 before my 1st Chemo injection Docetaxel
03/17/2024: PSA 0.076 before my 6th/last Chemo injection.
05/3/2024: PSA 0.055 - not considered remission
06/03/2024: A new PMSA full body scan (2nd scan)

Honestly I was optimistic in achieving non detectable or Zero PSA on the May 3 blood test but felt letdown since the original PSA was 0.367 prior to my first chemo.
That said I did have the (triple treatment). Staying positive as everyone tells me.
Wishing all posters good health and a long life.

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You broke what Dr. Scholz calls the threshold, PSA < 0.1 . That is considered a good outcome. It seems to take 6 months to get to that point, which is a little over the 5 months. Still not too far off. It may be that the doctor added Chemo because your PSA was not falling fast enough after surgery. May be it is more appropriate to question why surgery if he was intended to give the triple treatment? It would have spared a lot of expense and negative physical effect. Put another way, if you have started off with triplet right from the get go, without surgery, would you have arrived at the same result, or e perhaps even sooner, say within 5 months? It bears thinking about.
Dont mind me. I am just another layman trying to make some sense.

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