64 and recently diagnosed with prostate cancer, options?

Posted by lwhines @lwhines, 4 days ago

I was just told biopsy showed Gleason 9 in base and mid gland of prostate with PNI. Currently waiting on genetic test and reviewing treatment options. Any advice/suggestions appreciated.

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Profile picture for kujhawk1978 @kujhawk1978

Well..

Others have provided solid feedback.

A starting point may be to start learning the language, terms and their definitions. It's an alphabet soup but if you want to have graduate level dialogue with your medical team, then you cannot be having the "deer in the headlight" look about ADT. ARI, PFS, RPFS, PSADT, PSAV, IMRT, HIFU, Proton Therapy., PARP Inhibitors...

Next up, be one familiar with the baseline science - the clinical guidelines such as NCCN, AUA...these should be the starting point for discussion with your medical team.

After that, read up from patient centered sites...two I use (among many others) are Prostate. Cancer Research Institute and Prostate cancer Foundation, they have invaluable patient centered education resources.

Understand that there likely is no single "right" decision. There are "good" decisions..

Surgery could be a good decision
Doublet or triplet therapy could be a good decision.
The addition of radiation to doublet or triplet therapy could be a good decision...

You get the idea...the underlying principle that may drive a decision is "high risk PCa may necessitate aggressive treatment choices.". Do not underwhelm your PCa or it may overwhelm you!

My experience says applying the science to one's own clinical data, or as I call it, the art of medicine, is a good way of approaching treatment decisions.

As others have indicated, a PSMA PET may be useful in informing the discussion and subsequent decision between you and your medical team.

As others have indicated, you may be around a while, cured, maybe, managing this as a "chronic" disease, possibly.

I'm going on 12 years, high risk...only three of this years have been on treatment, the rest off. I'm on a break from doublet therapy, 20 months now, labs yesterday showed no change, PSA stable at .03. It's likely at my consult with my oncologist we'll talk about our vacations and agree to the time of our next labs and consult. I may be bold and go four months, that would take me to a two year treatment break.

I was 57 when diagnosed. The words of my urologist still "haunt me, "Kevin, you have prostate cancer and it's aggressive...!" Talk about a shock to the system! I had my pity party then got busy .

My options then were binary and sequential, each destined to fail, death the outcome.

Today, you have a plethora of choices brought about by medical research, combining treatment and bringing them forward in the disease state vice waiting for failure and castrate resistance. Heck, even the castrate resistance state has choices!

I'll close for now, you have lots of homework to do, get to reading. As always, come back up on the net, members on this forum will share their experience, knowledge and insights from the "school of hard knocks!"

Kevin

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@kujhawk1978
I’ve run into so many people whose doctors said to them you have aggressive cancer and they anre only going to live 3 to 5 years. After double that time alive, they understand that making those types of statements is not beneficial and can actually be harmful.

Prostate cancer patients are living a lot longer with the treatments we have now.

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Profile picture for keywest19 @keywest19

@lwhines my names is Jim Woods. Look me up on Facebook and message pm me if you have any questions on my experience. I’ll shoot you my #

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@keywest19
Too many Jim Woods on facebook, how can I PM you in this forum?

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Profile picture for lwhines @lwhines

@keywest19
Too many Jim Woods on facebook, how can I PM you in this forum?

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@lwhines
You can’t private message for a few weeks because you just joined up. They put it away and don’t lie to you to do it right away.

After a few weeks, an envelope will Appear next to the bell in the upper right hand corner, and you will be able to send private messages then.

If the other person who’s been here longer private messages you then you can respond.

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