Rising PSA post RARP + new pet scan results

Posted by ucla2025 @ucla2025, 16 hours ago

I’m new here and I have greatly appreciated everyone’s input. My husband’s PSA has been rapidly rising since his RARP in early June. We knew going in there were some pelvic nodes that were infected. Our wonderful surgeon told us he would try to remove the infected nodes during the surgery and he did successfully remove two out of three. He told us we were likely looking at follow-up radiation down the road. OK, we get it. However, the PSA since then, a few months ago, doubled and then tripled very quickly. So we were of course getting quite worried. Our insurance made us wait for THREE PSA tests before they finally agreed to cover a new PSMA pet scan. Anyway, we had that scan yesterday and I am pleased to say it detected several pelvic nodes that are infected including the one the surgeon couldn’t get out during the RARP. Why am I pleased you say? Because what we can see is still in the pelvic area. And the node that wasn’t removed had reduced its suv max value by 40% in two weeks on Orgovyx. Our oncologist gently prepared us for something worse because of the Gleason 9, cribiform, and a bunch of other very aggressive factors. We are headed for radiation + doublet therapy for two years…and one margarita each before dinner.

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jeff Marchi | @jeffmarc | 15 hours ago

You really need to get a second opinion from a center of excellence. Sounds like the doctor you’re going to is not keeping up. You should have been given salvage radiation when your PSA hit .2. That could’ve prevented the spread of cancer that you now have. Leaving it go past .2 is very risky and the doctor that would do that should not be the one that you wanted to depend on for your care.

You now have a serious case of cancer and you may need chemo or Pluvicto.

They are not considered infected. They are tumors called metastatic prostate cancer.

If you have more than five of them, then chemo is usually what is done.

Please find yourself a center of excellence and get yourself a better doctor to handle your care.

ucla2025 | @ucla2025 | 14 hours ago

In reply to @jeffmarc "You really need to get a second opinion from a center of excellence. Sounds like the..." + (show)

Wow, okay. We are receiving great care from UCLA and I’m surprised you question our decisions.

jeff Marchi | @jeffmarc | 13 hours ago

In reply to @ucla2025 "Wow, okay. We are receiving great care from UCLA and I’m surprised you question our decisions." + (show)

You’re right I UCLA is an excellent place to get treatment. I forgot you had your treatment there.

You could do something like see Dr. Scholz and Marina del Rey for a 2nd opinion. I know a lot of people that have done that.

ucla2025 | @ucla2025 | 12 hours ago

UCLA was our second opinion. We are under the care of Dr. Robert Reiter and Dr. Amar Kishan. I know the nodes are metastatic cancer. So what if I said they are infected. They are infected with metastatic prostate cancer. You act like we don’t know it’s a serious case. We most certainly do and that’s why we sought out some of the best care to be found. I thought this was a support group.

jsh327 | @jsh327 | 3 hours ago

In reply to @ucla2025 "UCLA was our second opinion. We are under the care of Dr. Robert Reiter and Dr...." + (show)

Congratulations on taking the time to celebrate, support your husband on his (and yours) PCa journey, and continuing to solicit input from the experienced members of this group.

Sometimes there is a difference of opinion amongst even the best doctors of next treatment steps.

If a doctor or doctors do not use the most recent care guidelines for treatment, it is often helpful to have as much information as possible so that you can learn why they are not following a more recent recommended treatment plan for your husband’s specific condition.

While Drs. Reiter and Kishan are well respected within their field, you want to make sure that you have the benefit of other PCa specialists that in this case are focused in systematic (metastatic) treatment. In particular, so that you understand why doublet treatment was not already started and why doublet treatment is being recommended over triplet therapy at this stage, given the characteristics of your husband’s PCa.

mjp0512 | @mjp0512 | 3 hours ago

I'm sorry but I have to disagree with you. Switch to a nice single malt before dinner. Margaritas are way too sweet for cancer patients. 😁

But seriously, good to hear you're pleased with the scan but sorry to see the PSA going in the wrong direction. Best wishes as you continue on this crappy journey. I start radiation next Tues. Not looking forward to the month plus back and forth and even less to the side effects. Fingers crossed they won't be too bad, and I've got my "Cancer Sucks" wardrobe ready to go. Even got some "This End Up" stickers to help the techs out.
Doublet started in June. No surgery in my case, though. I am really looking forward to the month of November off before another progress peek in Dec. Best to hubby!

web265 | @web265 | 3 hours ago

I'm glad for you in the sense that you and your husband now have the answer to the problem of the increasing PSA numbers, but feel bad that that happened to him.

I noticed in your post you really didn't ask any questions. I'm posting this comment not so much for you as other folks that might read it.

You mentioned that "Our insurance made us wait for THREE PSA tests before they finally agreed to cover a new PSMA pet scan" Was that 9 mos? No bueno in my mind, that's a long time to have things growing in an aggressive situation like this.

I was in a similar situation although my numbers weren't as elevated. My doc said I needed the scan but knew my insurance wouldn't pay for it. I negotiated with the hospital for a cash payment, it was about 60% of the "list price" for the scan. I got the scan, then fought with the insurance company, ultimately they paid for it.

I WILL NOT let insurance companies dictate my medical treatments. I'd sell the house or a car first. I realize the luck/blessing I have being able to do this, knowing not everyone can. I trust my doctor, not my insurance company. I have about a half dozen instances of things like this where I went out of pocket for things, mostly x-rays and scans, you'd be surprised what you can negotiate the cost down to, but, that number is still often higher than the negotiated price the insurance company pays, it's still in the facility's best insterest. The scan was clear which showed us it was likely just some cells in the pelvic region, was under the IMRT machine the next month for marking and measuring.

Just something for the group here to think about.

Best of luck to you @ucla2025 and your husband!