Consult today about lymph node involvement

Sorry for the length of this post.

Here's some background info: My husband had RALP in 2014. His PSA first became detectable in June 2020. It has been rising steadily since then and, most recently, went from 0.1 to 0.15 in three months.

We've already made the decision to start salvage radiation to the prostate bed and lymph nodes, and to combine it with a short course of hormone therapy (6 months). This seems to yield the best outcomes according to recent studies.

In the meantime, my husband had a PYLARIFY PSMA Pet/CT scan. The imaging report said that it was equivocal/suspicious for prostate cancer in one internal iliac node. When we met with the doctors, we were kind of surprised that they acted as if it IS cancer--even though the report said equivocal/suspicious. OTOH they said to not worry about something that showed up in the lung, or some "bone islands" that were identified as not prostate cancer on the iliac bone and two ribs. (Of course I'm worried about bone islands because that was exactly what they called rcroller's misdiagnosed bone mets.)

Today we're meeting with my husband's urologic oncologist with a couple questions:

--a friend who is a doctor asked why they're not removing the "hot" lymph node. Do they do that? We'd still do the radiation plan after removal.

--assuming it's in the lymph node--which they seem to be doing--is it time to have a medical oncologist?

--again, assuming it's in the lymph node, is my husband looking at a longer course of treatment of ADT?

--is it reasonable to have the PSMA scan read by someone else? These are relatively new and I have no idea how experienced the doctor was who did the report.

--most important, what exactly does this mean for the future? My husband has become focused on the stage 4 label and words like incurable--none of which came from his doctors btw.

Any insight would be most welcome. Thanks!

Well, I agree with F8 that the primary concern is quickly getting the ADT shot to shut down the PSA uptick before he has RT.

As for the hot node, taking it out likely wouldn't accomplish much. If there's one node that's detectability hot there are probably other nodes that are undetectably hot. The RT can hopefully get it all.

Melaine said...
Thanks F8 and Mattam.

My husband is getting his first shot on Thursday, and then his first radiation treatment on Monday. His doctor likes to do HT concurrently with RT rather than waiting a month or two before starting RT—even with radiation to the lymph nodes.

There are only so many decisions I can question.

i think the treatment plan sounds great! you'll never hear me say: "you have plenty of time to make a decision". you have one shot to beat this thing. hit it fast and hard!

I too was 50 when diagnosed and had RP only to have BCR afterward. My Axumin scan didn’t find anything, but knowing that I had LVI and one shot to knock out the cancer for good, I opted for radiation to my entire pelvis and six months of Lupron. I’m glad I took that aggressive approach, as I have been undetectable since — almost three years. My point is this: you will want to hit it fast and hard. I wish you both all the best.

Melanie,
I’m glad to hear that you and your husband are feeling more positive after visiting with your doctor. I’ve personally found that half the battle with cancer is mental. In fact, I’m sitting in the parking lot now after getting my 6-month PSA draw. Results are due in a couple of days. I purposely think only positive thoughts during this process. With regards to LVI on my post-RP pathology report, LVI stands for “lympo-vascular invasion.” You will need to Google that, as I don’t think I can accurately describe exactly what that is here. My uro called it a “very soft finding” when I questioned it, but other doctors later told me it is indeed something you’d rather not see on the report. I am under the impression that it increases the likelihood of recurrence / spread beyond the prostate. Sure enough, I had BCR right after surgery. Was it due to LVI? I don’t know, but the rest of my pathology report was clear. I later fired that uro and got a new team. I wish you and your husband all the best as you move forward!

You are right that local LVI is not stage four.

But once they become regional or distant then they jump to stage four.
IVA - regional
IVB - distant, my case, I have no mets to organs or bone, but because I have distant LVI, I am Stage IVB

Staging and Grading

Melaine,
My PCa history is somewhat parallel to your husband's, though I had more extensive involvement shown at biopsy and was also positive for SVI. But even with that somewhat more aggressive pathology I went nearly 8 years before having SRT. Based on what we know today, I'd have done it a year or two earlier while my PSA was still in the range your husband's is showing now. At the time of my SRT, a scan showed one hot lymph node. The radiation team was able to target that node as part of each treatment for the first 5 or 6 weeks of the 8 weeks of radiation. My RO said that was the maximum dosage he could use for that node without risking collateral damage. After SRT my PSA remained completely undetectable for several years (see my signature below), and even though PSA returned it remained very low for a couple of more years.

My message to you and your husband is that he may have a better chance of a compete remission, given his pathology at the time of surgery was more favorable than mine was. But even if treatment doesn't produce a permanent remission, he will highly probably have many years of successful PCa management with the many treatments that are available these days. I was 55 when diagnosed. I'll be 76 in three weeks. And though my cancer has never been cured, successive treatments have kept it at bay and kept me in good health otherwise. I spent three hours snow blowing and shoveling on Sunday. In a couple of months I'll resume my spring, summer, fall volunteer work mowing and brush cutting and chainsawing fallen trees and branches and monitoring invasive growth on 62 acres of conservation land and a 30 acre pond.

I know many report unpleasant reactions to ADT treatment. Maybe I'm luckier than most, or maybe just knuckle-headed. But other than expected loss of sexual function, my side effects through treatments with Degarelix, Lupron, and now Lupron plus Zytiga have been only occasional mild warm spells - no severe hot flashes or night sweats; no fatigue, no brain fog that I've noticed other than the usual "where did I leave my keys." I do need to take more frequent rest stops when doing heavy outdoor work, but that could also be due to my age, even though in my own mind I'm still only 39.

Best of luck with the treatment. I'm sure it will go well.
Jim

Motown Paul: Yes, you're so right that an important part is mental. That's why I'm so relieved that he's able to continue with exercise which helps keep him balanced and happy. (He had a rough start with radiation but seems to be beyond that now.) I was happy to see that you got a great result with your blood work!

Duck2: I have heard of Dr. Kwon's approach. A second opinion advised us to wait until my husband's PSA was 0.2, and then have scans. We weighed the pros and cons and, for us, waiting did not make sense. As it turns out, we didn't need to wait because something showed up on the scan at a lower PSA. As our doctors have discussed with us, everyone needs to do what is comfortable for them. Some people can take the wait while others cannot. Good luck!

Alephnull: Thank you for that info. According to that website, my husband is indeed stage IVA (regional lymph nodes), but his doctor doesn't seem to agree with that categorization. If it makes my husband happier to not think about the stage IV label, then I'm all for it.

Djin: I'm pretty sure we read that study, or we have discussed it with one of the ROs with whom we consulted. We've looked at this from so many different views and decided to hit it hard even if the studies didn't necessarily support it. As one doctor explained, men with my husband's numbers don't necessarily benefit from all 3 (prostate bed + PLN + ADT), but that's because the follow-up hasn't been long enough. He thinks that's where it's going, however, and that helped us decide to do all three. Then the scan showed PLN involvement and the decision was reinforced.

Is it a perfect solution? No, especially with my husband's history of ulcerative colitis. But his UC has been under control so it's a risk he's willing to take especially given his age (58).

Jim: thank you for posting your treatment journey and encouraging thoughts. I will share your words with my husband. It's good to know that, after 20 years, you're leading a very active life. I wish you all the best.

Thank you again for all your comments! I wish everyone continued good health.