Did you start radiation immediately or wait until PSA was 0.2 ng/ml

My husband has been treated and monitored since January 2011 by Dr. Kwon at Mayo Rochester, and by several radiation oncologists there as well. Every single one of them repeats the statement "We can't treat what we can't see." I know it is frustrating to wait for something to show up, but it's probably better than taking a shot in the dark that might cause harm and do not good. Hang in there!

You are not getting the recommendations from the doctors you should really be speaking to. Dr. Kwon gives fantastic speeches, but he’s a urologist. Dr. Heath is at the same Mayo Clinic and is a fantastic GU oncologist that really knows what to do for the best treatment. You should try to get her to work on your case. There might be other options that haven’t been addressed.

I know that Doctor Kwon Frequently does work with Dr. Heath with his patients, So doing this would not be unusual.

Jeff, we know that Dr. Kwon is a urologist, and we do have a GU oncologist among my husband's other doctors. My husband sees a terrific GU oncologist in Indianapolis with whom he has worked for years. We chose to go to Indianapolis, which is only an hour away, when my husband began docetaxel chemo in 2016 since the appointments were every three weeks and Mayo is at least a ten-hour drive away. Since then, my husband has continued under the care of both Mayo and his Indianapolis GU oncologist. We had never heard of Dr. Heath until I read your earlier comment about her on MCC. We are seeing Dr. Kwon in September, and I will ask if my husband is willing to ask Dr. Kwon then about seeing her.

Hi lag, since your husband had chemo he had metastatic cancer; did it spread after initial treatment or was he diagnosed with it from the outset?
In his case, not being able to treat what cannot be seen makes a lot of sense since his PCa cells could be literally everywhere and perhaps nothing is large enough to be picked up on scans…so what do you treat? I get that…
However, in salvage radiation - or adjuvant following surgery - it is now assumed that the cancer has a VERY high possibility of being in the pelvic nodes even though lesions cannot be seen on most scans. NOT treating them does cause more harm because the cancer is not being fully addressed and will recur, necessitating more ADT and possibly chemo as well.
That is the difference in the two scenarios. Sorry for any confusion - Hope I clarified my original statement. Best,
Phil

Hi Phil,
My husband was first diagnosed in 2005 after a local biopsy, and testing seemed to show that the cancer had not spread outside the prostate capsule, so he was treated locally with only brachytherapy and external beam radiation to his pelvic area. All seemed well for six years, when a sharply rising PSA alerted us to a recurrence. That is when my husband referred himself to Mayo and Dr Kwon. We don't know if the cancer was already metastatic in 2005, or whether it became so sometime in the next six years. It was explained to us that the prostate cancer sort of seeds the bloodstream with cancer cells, which circulate around until they finally create a metastasis, but we don't know at what point that happened. The treatment protocol at Mayo has been jokingly described to us as "whack a mole," and what follows explains why. Between 2011 and 2016, my husband had several rounds and types of radiation at Mayo, and was on various medications during that time, including bicalutamide and others I can't recall now. In 2016 it became clear that the metastases were coming fast and furious, and that chasing them with spot radiation was no longer controlling them, and that is when docetaxel was prescribed. That kept the cancer quiet for some time, but eventually more rounds and types of radiation were necessary, along with abiraterone and prednisone starting in January 2020, which kept the cancer in remission for over three years until the next recurrence. Finally in January of 2024, my husband began Pluvicto treatments, which lasted until August of 2024. It was only moderately successful. Xtandi was begun in January 2025 but was discontinued after four weeks due to bad side effects, which my husband never had with Zytiga/abiraterone. More radiation at Mayo in March 2025, after which the PSA dropped some but did not became undetectable. Scans in June 2025 didn't show where the active cancer is hiding, so we return in September 2025 for scans and labs and a conversation about what to try next.

Hi Phil,
My husband was first diagnosed in 2005 after a local biopsy, and testing seemed to show that the cancer had not spread outside the prostate capsule, so he was treated locally with only brachytherapy and external beam radiation to his pelvic area. All seemed well for six years, when a sharply rising PSA alerted us to a recurrence. That is when my husband referred himself to Mayo and Dr Kwon. We don't know if the cancer was already metastatic in 2005, or whether it became so sometime in the next six years. It was explained to us that the prostate cancer sort of seeds the bloodstream with cancer cells, which circulate around until they finally create a metastasis, but we don't know at what point that happened. The treatment protocol at Mayo has been jokingly described to us as "whack a mole," and what follows explains why. Between 2011 and 2016, my husband had several rounds and types of radiation at Mayo, and was on various medications during that time, including bicalutamide and others I can't recall now. In 2016 it became clear that the metastases were coming fast and furious, and that chasing them with spot radiation was no longer controlling them, and that is when docetaxel was prescribed. That kept the cancer quiet for some time, but eventually more rounds and types of radiation were necessary, along with abiraterone and prednisone starting in January 2020, which kept the cancer in remission for over three years until the next recurrence. Finally in January of 2024, my husband began Pluvicto treatments, which lasted until August of 2024. It was only moderately successful. Xtandi was begun in January 2025 but was discontinued after four weeks due to bad side effects, which my husband never had with Zytiga/abiraterone. More radiation at Mayo in March 2025, after which the PSA dropped some but did not became undetectable. Scans in June 2025 didn't show where the active cancer is hiding, so we return in September 2025 for scans and labs and a conversation about what to try next.

You should ask about getting Nubeqa (Darolutamide). The side effects are minimal compared to Xtandi And it works quite well. After 15 years and four remissions, I’ve had 20 months in a row with An undetectable PSA. I had Zytiga for 2 1/2 years and was only undetectable for one month.

I know a lot of people that attend the Ancan.Org Weekly online advanced prostate cancer meetings that have switched to Nubeqa And it works quite well for them. Almost all of them have had advanced prostate cancer for a long time and many are only on Nubeqa because it keeps their PSA undetectable and testosterone isn’t a problem, it works around it.

Hopefully your husband’s cancer can be treated successfully.

My God, what a scourge for both of you…but he’s still chugging along so that’s what counts, right?
Compared to today, 2005 was the Dark Ages for PCa…who knew the significance of cribriform/IDC on biopsies? And now we have PSMA, Decipher and other genomic tests to help decide which treatment might be best. Today, your husband’s treatment might have been vastly different - and 20 years from now who knows??
Whack- Mole might become the gold standard for all we know, right?😆
Phil

Yes, it has been both an ordeal and a rollercoaster ride--but my husband is still alive 20 years after diagnosis, even though he has been MCRPC for many years, so I am grateful for that. Our experience should also give hope to other men and their caregivers to hang in there and take things as they come, includng the whack-a-mole protocol. 🙂

Yes, it has been both an ordeal and a rollercoaster ride--but my husband is still alive 20 years after diagnosis, even though he has been MCRPC for many years, so I am grateful for that. Our experience should also give hope to other men and their caregivers to hang in there and take things as they come, includng the whack-a-mole protocol. 🙂