Start of BCR?

Today we received the 9 month uPSA result for my husband. It was 0.014.

I have to be honest, I was prepared for a rise in his PSA because of the fact that he has a margin (2mm Gleason 3 @margin), but I really didn't expect it this soon. I would really appreciate your thoughts...Is this the start of BCR?

Thank you TA. I did set up a consultation with an RO just so we are under the guidance of the type of doctor that would care for him if he needs SRT. She's at the University of Chicago as well and they only test to <0.05. I've been getting these done through Labcorp online. The surgeon moved him to a 6 month testing schedule in August after his last undetectable. I'm anxious to see how long the RO tells us to wait before retesting. This next one is going to be very important.

It means a lot to me to have your input, thank you so much!

Thank you Dorie! I do too! I will keep everyone posted.

just posting so you can see my stats. Our paths are essentially identical.

Part limbo. Part "whatever".

can be a strange place to be but your husband had several zero's .... and strange as it sounds... the margin is actually a good thing in this neighborhood ....

InTheShop,

You nailed it! The waiting is excruciating! I am getting better at it. I'm learning to cherish and value every single moment. I'm not claiming to be perfect at it, but I am better than I was 1 year ago...not sure if that's good or bad? In some sort of strange way I almost don't want to retest because I 'm afraid of what's to come/what it will say. Thank you so much!

Some steroids can reduce PSA.

We met with the RO. His case is going to be put in front of a board that will include our surgeon to see if they recommend treatment now or to wait to see what the next test says. Basically, right now I have no idea what will happen.

They took copies of all of the uPSA tests I had (did those on our own so they didn't have the results). The first uPSA to come in with a change was 0.014 and then we retested a little less than a month later to try to validate it before we saw the RO and it came back at 0.012. They only test down to <0.05 at the UC.


The RO feels he will need treatment at some point. As I said above, because he has a margin my gut was telling me all along that I should prepare to be told at some point that he'd need SRT, but I didn't expect it this early. I also didn't expect the RO to say that they may treat now. I thought she'd say we need to see what a few more PSA test tell us.

I asked if this would be considered a recurrence within the first year and I think she said no, because we're moving the goal post. I'm pretty sure about that answer but not 100% because I had a few weak moments during the meeting where I went a little numb.

We have to wait about a week to see what they recommend as the next step. We also discussed some of what would happen if/when he does need SRT. She said it will be 7 weeks, 5 days a week (we didn't discuss the Gy but I read in their brochure they use TrueBeam.

He would also get a 4 month ADT shot. I just saw this article and now I'm worried about the ADT: www.renalandurologynews.com/aua-2015-prostate-cancer/early-adt-for-recurrent-prostate-cancer-may-hike-death-risk/article/415367/

Since his margin is at the bladder neck I asked if more radiation would be applied to that area (I really don't know how it works) and she said no. There would be no radiation to the nodes. No scans or cystogram because nothing would see anything at this small level. Should I be asking for a PET scan? Is there a chance that it is in a nearby lymph node? I want to make sure I'm asking all of the right questions.

Bobbiesan,

Thank you for the link. I read it and it was helpful. I really have no idea anymore what they are going to come back and recommend so I'm trying not to play every possible situation over and over in my head but it's very difficult not to. I don't even know what they will say about the fact that I got these uPSAs on my own. I think the RO will want to continue seeing the uPSA results but this is an example of how clueless I am to what they will decide (no matter what they decide, I will still get the uPSA now for sure).

about the probable EPE finding on the MRI: I did ask if they were sure there was none at the post op pathology meeting and they confirmed there was no EPE and told me that they were sure he was indeed a pT2c. That's all I asked about it since they assured me he didn't have it and I think they have a very good pathology department.

about the <0.05 testing at UofC: Yes, exactly! If I didn't go get the uPSA on my own, we'd be celebrating a Christmas like no other this year because he'd still be "undetectable" with no changes or increases that we could see!! But...this is the exact reason I got the uPSA, so if we did have a change of any kind we could hopefully catch it before 0.03 and discuss it with an RO. I think many of the major teaching hospitals around me test to the same level that UofC does. Our primary care physician offered for us to get the test with him every 3 months but his test only goes to <0.01.

I do think UofC is ok with not testing below <0.05. The PA even told me not to seek the uPSA elsewhere (I'm pretty sure he did that to try and save me all of this anxiety) but if 0.03 is the level that you need to start watching at, I had to find a way to test to that level or lower.

about the possible residual benign tissue, the RO said there are other things (she may have said glands? but I can't recall exactly) that can generate this small amount of PSA. My thought on that is it wasn't generating it in any of the tests prior to this so I'm not going to place a lot of false hope in that.

about what's making them move on his case: I asked her what was making her even think about SRT at 0.01 and she said they like to look at each case and not just say everyone gets treated or not treated based on a .2 PSA. I'm sure his age plays into that. She also said she needs to see what the review board/team says so I'm glad our URO Surgeon will be included. She did also say she thinks he'll need treatment at some point. Maybe she said that because he has a margin and now there's been a change in his uPSA? I don't know. She reminded me of the fact that his 3+4 had <5% pattern 4 was good.

We talked a little about diet because I asked her what she thinks. She said chicken is ok (we stopped eating chicken, eggs, and dairy in April I think) and so are eggs and dairy. She said everything in moderation. There are so many different opinions on diet, it's mind boggling.

I'm glad you're posting, it helps very much to learn about what is going on with everyone else. I thought the RO was going to kick us out of her office and tell us we were silly for being there at only 0.01 but maybe that was just wishful thinking. You're right, this awful disease is very personal, so many similarities for so many of us yet each case is different and you never know what to expect.

Jack & Diane said...
I thought the RO was going to kick us out of her office and tell us we were silly for being there at only 0.01

Yep, sounds just like my visit. I am not confrontational by nature, but wanted to get the uPSA results I had collected in front of the uro. Even took copies of the “start getting concerned at .030” articles to discuss with him, as I did get up to .027 this year before seemingly plateauing. He was diplomatic, as usual, but I could tell he was getting a little “edgy”.

He told me part of what guided his thinking was a lecture he attended at UCSF conference (I forgot dr. name). Speaker made point of what quality of life is missed by worrying about things that “might” occur, esp. those with low order of probability. Uro told me, paraphrasing, “you could live ten more years, have a heart attack and die, and that is a more likely occurrence than dying of prostate cancer, which in your case, Robert, is very unlikely to happen. Think of the things you would miss or that would be 'tainted' worrying about PCa recurrence for all that time”.

I’m going to try to absorb that view. I’m really trying. But I spent nearly forty years in computer science, corporate, military, intelligence, etc. I functioned by gathering the data, analyzing it, and pushing it to “the people upstairs” to let them make the policy decisions, weigh competing priorities, do the politics, etc. Now, I am the “people upstairs” (ha). Hard switch to make.

J & D: wanted to pass on another reference for you. It is from the U Chicago Michael M Davis Lecture Series Univ of Chicago Oct. 14, 2014. Had trouble with the link but you can find it by googling “Collaborative Care for Prostate Cancer as a Chronic Disease Davis Lecture Series”. By same doctor as other link I gave. In the PDF, you can find for “ADT” or “Androgen”, etc. Many other PCa related charts therein. Just to reemphasize what good care you are getting. I think the committee approach (that includes your uro) will result in a very good recommendation for you. I will be very interested in hearing the results, if you will be so kind as to post later.

Again, so happy you are seen at a campus that has this level of forward thinking.

Robert

Saipan,

You know what's interesting? I'm looking at everyone's signatures with a little bit of a different perspective now. I'd see people that are at <0.05 and figured well it's ok that they only test to <0.02 or <0.05 because you can't get SRT until you're at .2. I have no idea why I thought that was written in stone, but I did.

Someone I follow on HW because of his young age, Zzarth, I know will begin SRT in January I think. He's even younger than my husband. Zzarth, if you see this I'd love to know how you're doing on Lupron.

Figuring out how to make the 7 weeks of SRT work logistically will also be challenging because my husband has a pretty physical job. I know my husband will try to put on the best face possible and say he's doing fine because he always tries to do that so I don't worry. He's just that way. He never ever complains or wants anything for himself. He is the most amazing man and that's why I insist on doing only the best for him.

I am thankful to be located in Chicago where we have access to the medical team we have at UofC.

Happy holidays to you too, Saipan!

Sounds like good advice. You're getting the collective opinion of 7 doctors who treat patients like your husband.

Have a happy New Year, and good luck with the next test.

Waiting for a significant PSA rise seems like a good plan.