1. < Prostate Cancer

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.

northoftheborder | @northoftheborder | Jun 21 2:36pm

If I understand the video I watched from a Mayo oncologist correctly, for mCSPC, in addition to treating the prostate itself (radiation or surgery) and starting on ADT and an ARSI, there are two different paths for a proactive treatment:

1. Many metastases: use chemotherapy to attack the cancer preemptively.

2. Few metastases ("oligometastatic"): apply separate radiation therapy to each of the metastases.

I had just one (large) metastasis to my spine in 2021, so at my cancer centre in Canada we took the second approach after debulking surgery to remove most of the lesion. Now it's 2024, and so far, so good.

***

Notes:

mCSPC: metastatic castrate-sensitive prostate cancer (still responding to ADT)

ADT: androgen-deprivation therapy (e.g. Firmagon)

ARSI: androgen-reception signal inhibitor (e.g. Erleada)

REPLY
ecurb | @ecurb | 6 days ago
In reply to @retireddoc "I am 4b as well. I had essentially the same therapy as you (Johns Hopkins calls..." + (show)
@retireddoc

I am 4b as well. I had essentially the same therapy as you (Johns Hopkins calls it Total Eradication Therapy-TET). My PSA is currently undetectable one and a half years after treatment and I am off all meds. My MO at Hopkins is heavily involved in research and I have read some of his articles. When cancer cells are stressed (chemo, radiation etc) some of them go into a hibernation state with double DNA; the cells look different under the microscope than the other cancer cells. After a time (don't know how long) when the stress is no longer present they begin dividing again. That is why some MO believe it is futile to have excessive chemo treatments which can have significant side effects. No matter how many you get you won't kill them all. The first 4 or so treatments kills 99% of what the chemo will do.

Good luck to you.

Jump to this post

Hibernation state is a great description since I was exposed to agent Orange in 1972, then the stage 4 cancer shows up in 2022 with pelvic lymph node involvement too. How to keep them in hibernation is the big question for me??

REPLY
wooldridgec | @wooldridgec | 3 days ago
In reply to @sixto "What Stage 4 do you have? Stage 4A is contained within the pelvic region. I was..." + (show)
@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?

Jump to this post

The doctors really do not know how long you will live with this disease. I have a friend that coming up to his 9 years anniversary. He started de novo with cancer in his lymph system and a PSA over 1400. Everyone responds to treatment differently. I just had my 2 year appointment with my oncologist and she said some patients get radiation, ADT, an ARSI (darolutamide, apalutamide, xdandi) and 6 chemotherapies (docetaxel). For some men, their PSA continues to rise and they do not respond. Even with a few metastases. On the other, some men with a higher volume of metastases receives the same treatment and their PSA drops < 0.100 and stays there for many many years. If we were all being honest, this disparity is what scares us, because you just do not know how you will respond to treatment. One man's Adenocarcinoma cancer is different that another's. This drives me crazy, because I am software developer. I deal in logic and repeatable facts. This all seems like gambling to me. Regardless, my oncologist said I have beaten all the milestones and odds. I think you know when know when you know. My cancer is not coming back. There is a small percentage of men that remain castrate sensitive for extended years and some never become castrate resistant.

REPLY
View MoreView Less
Please sign in or register to post a reply.