Stage 4: What are my options?

Posted by briang1958 @briang1958, Dec 1 10:28am

The VA used the terms metastasized, incurable and palliative at my latest appointment with these notes after a "PET PSMA demonstrated a tiny 4 mm left common iliac lymph node with SUV max 6.68 PSMA radiotracer avidity.
Upon review of the prior radiotherapy treatment plan there is no anticipated critical overlap between the salvage radiotherapy treatment plan and this lymph node that would make focal SBRT prohibitive."

They said I will die with prostate cancer but not necessarily from prostate cancer, does this diagnosis mean I have stage 4 cancer?

Not a fan of ADT which is what they want to do for the rest of my life.

I have an appointment at Mayo next week and am anxious to know what other options might be for me?

Already had radical prostatectomy in 2014, 35 radiation treatments with ADT in 2015, now this.

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

I'm so sorry for your news. It's tough hearing that. I think your cancer is stage 4a (still in the pelvic area) vs stage 4b (far from the pelvic area), but you will need to confirm with your oncologist.

The good (??) news is that it's oligometastatic (just one known metastasis in your case), which many oncologists are now starting to treat differently than high-load metastatic. If you feel strong enough, you can discuss with your team whether you want to treat the cancer "curatively" rather than palliatively; that doesn't mean they can actually cure it, but it does mean that they'll attack the cancer aggressively (e.g. by removing or radiating lymph nodes) rather than just focusing on keeping you comfortable ("palliative").

In my case, I was diagnosed with stage 4b oligometastatic PCa in 2021 (one metastasis to my spine). I was only 56 at the time, and I made it clear to my oncology team that I wanted to fight, so we took a very aggressive approach. So far, at age 60, there's no sign of progression and I remain in full remission (supported by ADT and ARSI). I have a good quality of life, but there are consequences to taking a more-aggressive approach, so take your time deciding. If you're at an advanced age already, and they expect the cancer to spread slowly, it will be a hard decision whether you want to put yourself through that.

As for ADT, it never gets "easy", but I definitely find it less difficult after over 3 years on it. One can get used to things, and I feel like the quality of my life is very high, despite the side effects from radiation and medication, and the spinal/nerve damage from the lesion and emergency surgery to remove it. I wake up most mornings happy and joyful, more so than before I had cancer (go figure).

As always, your mileage may vary.

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I had a prostatectomy in 2010, Radiation In 2014 And I’m still here 15 years later. I hit stage four in about 2020 with one metastasis, I was able to have it zapped With SBRT.

Have they discussed the option of using surgery to remove that lymph node? Stage four is when the cancer spreads outside the prostate, which yours has.

Going on Lupron is the easiest way to extend your life, but, you Could go on an Estradiol Patch instead of Lupron. The recent patch study conclusion found that it worked just as well, but had many fewer side effects. You wouldn’t need genetic testing to make sure you don’t have BRCA1 or BRCA2 which makes that patch deadly. You Should get hereditary genetic testing, you can get it from Mayo without a problem, just ask. One of these drugs will stop your cancer from growing and can shrink it, That’s why you want to use them.

I was on Lupron for seven years and Orgovyx for one year, Yes, it gives me hot flashes and my muscles deteriorated a lot so I have to go to the gym three days a week to get my strength back. The brain fog is no fun, but there are ways to work around it when talking to people. You need Lupron or Estradiol, don’t let the fear of those drugs shorten your life. You get used to the drugs after a while?

We could give you a lot more information If you told us what your Gleason score was after your prostatectomy, That tells how aggressive your cancer is. You may need more than just Lupron if it is high, Something like Zytiga or One of the lutamides.

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@jeffmarc

I had a prostatectomy in 2010, Radiation In 2014 And I’m still here 15 years later. I hit stage four in about 2020 with one metastasis, I was able to have it zapped With SBRT.

Have they discussed the option of using surgery to remove that lymph node? Stage four is when the cancer spreads outside the prostate, which yours has.

Going on Lupron is the easiest way to extend your life, but, you Could go on an Estradiol Patch instead of Lupron. The recent patch study conclusion found that it worked just as well, but had many fewer side effects. You wouldn’t need genetic testing to make sure you don’t have BRCA1 or BRCA2 which makes that patch deadly. You Should get hereditary genetic testing, you can get it from Mayo without a problem, just ask. One of these drugs will stop your cancer from growing and can shrink it, That’s why you want to use them.

I was on Lupron for seven years and Orgovyx for one year, Yes, it gives me hot flashes and my muscles deteriorated a lot so I have to go to the gym three days a week to get my strength back. The brain fog is no fun, but there are ways to work around it when talking to people. You need Lupron or Estradiol, don’t let the fear of those drugs shorten your life. You get used to the drugs after a while?

We could give you a lot more information If you told us what your Gleason score was after your prostatectomy, That tells how aggressive your cancer is. You may need more than just Lupron if it is high, Something like Zytiga or One of the lutamides.

Jump to this post

My voice recognition Messed this up it should say “ Would need a genetic test for BRCA1 or BRCA2.

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@jeffmarc

I had a prostatectomy in 2010, Radiation In 2014 And I’m still here 15 years later. I hit stage four in about 2020 with one metastasis, I was able to have it zapped With SBRT.

Have they discussed the option of using surgery to remove that lymph node? Stage four is when the cancer spreads outside the prostate, which yours has.

Going on Lupron is the easiest way to extend your life, but, you Could go on an Estradiol Patch instead of Lupron. The recent patch study conclusion found that it worked just as well, but had many fewer side effects. You wouldn’t need genetic testing to make sure you don’t have BRCA1 or BRCA2 which makes that patch deadly. You Should get hereditary genetic testing, you can get it from Mayo without a problem, just ask. One of these drugs will stop your cancer from growing and can shrink it, That’s why you want to use them.

I was on Lupron for seven years and Orgovyx for one year, Yes, it gives me hot flashes and my muscles deteriorated a lot so I have to go to the gym three days a week to get my strength back. The brain fog is no fun, but there are ways to work around it when talking to people. You need Lupron or Estradiol, don’t let the fear of those drugs shorten your life. You get used to the drugs after a while?

We could give you a lot more information If you told us what your Gleason score was after your prostatectomy, That tells how aggressive your cancer is. You may need more than just Lupron if it is high, Something like Zytiga or One of the lutamides.

Jump to this post

Thanks for the feedback guys.
I had multiple carcinomas 4+4=8, 2 x 3+3=6, and 4+3=7. 20% of prostate. I was only 55 when diagnosed. I also had a bladder lesion that had to be removed while he was in there, had to cut off a piece of my urothelium and reattach.
I did have some genetic testing and was told I did not have anything that could have caused the cancer.

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@briang1958

Thanks for the feedback guys.
I had multiple carcinomas 4+4=8, 2 x 3+3=6, and 4+3=7. 20% of prostate. I was only 55 when diagnosed. I also had a bladder lesion that had to be removed while he was in there, had to cut off a piece of my urothelium and reattach.
I did have some genetic testing and was told I did not have anything that could have caused the cancer.

Jump to this post

Just so you know, The Gleason score is based on your highest Gleason number and you are a Gleason eight, The other numbers do not matter. You could request that your slides be reviewed for a second opinion, Sometimes they come out with a lower score.

Your cancer did come back quickly after the surgery, That seems to show that your Gleason score of eight, Being very aggressive, was correct.

At this point, they would put you on Lupron and another drug normally, Zytiga If you don’t have serious heart issues. They also might put you on a lutamide.

Have they talked to you about chemo yet? Sometimes they like to combine Lupron with chemo in your situation, To try and knock out the cancer.

Your best bet is to get on Lupron and see if it knocks your PSA down to undetectable, you could also request an estradiol patch. Talk to your doctor about that. Estradiol would be a lot Easier on your body and works just the same on the testosterone.

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@briang1958, how are you doing? What did you learn at your second opinion appointment with Mayo Clinic?

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