ADT and Castrate Resistance

At diagnosis and surgery-- Stage 4a, Gleason 9, Decipher .99.

Surgery then radiation and ADT. PSA < 0.01 for over 2 years.

Comorbidities are diabetes type 2, high blood pressure, and reduced kidney function (eGFR ~40). On medication for all.

I was never tempted to second-guess you — we all make the choices we live with — but with your comorbidites and polypharmacy, it sounds like a wise choice. Those would probably tip me towards an ADT holiday as well.

Best of luck with everything!

I feel good about my Drs. I'm in good hands. Sometimes they don't communicate well, however.

In your opinion, what could be the reasoning behind them wanting me to stop ADT? What's to gain? I'm just scared we're giving an aggressive cancer a chance to start up again.

The forum isn't letting me reply. I must be accidentally triggering a keyword.

Please keep trying.

OK. I'll start with a simple reply and see if I can add to it. I have no medical expertise, but I think your medical team is trying to balance different risks. On the one hand, staying on ADT will reduce the risk of cancer progression. Going off ADT will reduce the risk of further damage to your kidneys or heart, or exacerbating the diabetes. Since they're not 100% sure you need the ADT, they're worried about you ending up on dialysis or needing an amputation because of a medication that you might not even need (at least for a while).

Unfortunately, the only way to find out if it is required is for you to go off it for a while and see what happens. So you have no safe option: either staying on or going off ADT comes with risks. That's a tough spot to be in — I've been there in a different medical context — and the choice is yours alone, since it's your health and future. I suggest having a frank talk with your medical team about the costs and benefits of both options, and tell them what's important to you and why. And best of luck, whatever you decide.

My MO says the benefits of ADT begin to decline after a couple of years anyway and staying on it longer is less beneficial. Other posts here say if I go off and PSA starts to rise, I can start back or go on to another treatment. With my cancer being of the aggressive type, I just don't want to do anything that might give metastasis and foothold. But, one way to look at it, a rise in PSA is called a "chemical recurrence". If it rises, we would be on it very quickly. But, I'm still scared about all this.

At diagnosis and surgery-- Stage 4a, Gleason 9, Decipher .99.

Surgery then radiation and ADT. PSA < 0.01 for over 2 years.

Comorbidities are diabetes type 2, high blood pressure, and reduced kidney function (eGFR ~40). On medication for all.

I had a similar diagnosis and an RP in December 2024. I was already on ADT and stayed on (degarelix) until 6 weeks ago.

PSA was consistently < 0.05, then 0.05

Yesterday my PSA reading was 0.09. This was my first reading since going off.Degarelix only six weeks ago.

My question for you is, what did your doctors do regarding your lymph nodes? I assume when you say radiation that it means your doctors targeted the lymph nodes among other areas.

My doctors have done nothing explicitly for my lymph nodes. Nothing. I went into surgery assuming they would be taken out; they were not. My doctor talked me out of radiation because he said he’s concerned about downstream cancer caused by radiation. Sounds good, except for the part where the near stream cancer is acting up because we did nothing with the lymph nodes.

When I read your post, I’m reading what I thought my post Surgery experience would be

however it is already a nightmare because my PSA is already increasing immediately after going off ADT.

My question for you is - did your doctors talk explicitly and aggressively about how to attack the lymph nodes? It sounds like there was a plan and the plan has worked.

My oncologist kept saying maybe you’re cured and I thought I was going insane because I saw the lymph nodes put up a 7 to 8 SUV uptake and thus I was almost certain that they were cancerous

So what did your doctor say about lymph nodes going into your surgery?

and for anyone reading this am I the only one who thinks it’s nuts that my oncologist and surgeon are kind of blasé about my lymph nodes?

I had a similar diagnosis and an RP in December 2024. I was already on ADT and stayed on (degarelix) until 6 weeks ago.

PSA was consistently < 0.05, then 0.05

Yesterday my PSA reading was 0.09. This was my first reading since going off.Degarelix only six weeks ago.

My question for you is, what did your doctors do regarding your lymph nodes? I assume when you say radiation that it means your doctors targeted the lymph nodes among other areas.

My doctors have done nothing explicitly for my lymph nodes. Nothing. I went into surgery assuming they would be taken out; they were not. My doctor talked me out of radiation because he said he’s concerned about downstream cancer caused by radiation. Sounds good, except for the part where the near stream cancer is acting up because we did nothing with the lymph nodes.

When I read your post, I’m reading what I thought my post Surgery experience would be

however it is already a nightmare because my PSA is already increasing immediately after going off ADT.

My question for you is - did your doctors talk explicitly and aggressively about how to attack the lymph nodes? It sounds like there was a plan and the plan has worked.

My oncologist kept saying maybe you’re cured and I thought I was going insane because I saw the lymph nodes put up a 7 to 8 SUV uptake and thus I was almost certain that they were cancerous

So what did your doctor say about lymph nodes going into your surgery?

and for anyone reading this am I the only one who thinks it’s nuts that my oncologist and surgeon are kind of blasé about my lymph nodes?