Conflicting POV from Doctors?

[JRPnSD]

My T2N1M0 post RP situation at present is PSA at .13 (was undetectable after RP...slowly increased to .08 and stayed there for the last 3 months)..DECIPHER is .78 (High)...Saw my RO and discussed the need for ADT and SRT...he felt the ADT was the highest priority and would add SRT (per NCCN guidelines) if I wanted to be aggressive in my approach. My URO the same day...said both ADT and SRT were needed. I have a 2nd opinion meeting Thursday with another RO and my MO...as I am looking for some consensus. Tall_Allen (many thanks), sent me this link...definitely says ADT +SRT.

prostatecancer.news/2017/12...

Any other feedback or questions I need to ask before Thursday? Many thanks to all...and my best to you on your journeys.

[Tall_Allen]

LOL@voting on your treatment.

First- the only kind of doctor that has authority about this are the ones that actually treat patients with lymph node metastases - that would be radiation oncologists.

Secondly, it is your life - you seem to be a smart guy who can read and understand the evidence and weigh the experience of the ROs you talk to. Consensus is not what's needed - making sure that you are as knowledgable as you can be, and that you are happy with your choice is what's needed.

[JRPnSD in reply to Tall_Allen]

Understood, but I only get 1 shot at this choice...and having my Doctors be in agreement would be reassuring. The other piece of info I got yesterday is that only 6 and 12 month doses of Lupron are available now due to shortages. So the 1 month dose I wanted initially to see what the reactions were before signing up for the long term stuff is no longer an option. I read your article...and NCCN. NCCN says that ADT is a 1 recommendation, and SRT is a level 2. Since each comes with their own "blessings" for side effects....I find this decision daunting.

[Hidden in reply to JRPnSD]

Its easy to get overwhelmed... drs do differ in their opinions..It was the same in my case . Follow who you trust . Surgery doesnt always prevent further treatments . Sometimes you’ve got to throw the kitchen sink at it. Think in years not months. It’s a pain in the butt to get monthly shots of anything . Better six months , please let us know what you end up doing.? Take care

[treedown in reply to JRPnSD]

I was given a 3 month Eligard shot in place of my 3 month Lupron shot Wed. Have you inquired if Eligard offers a 1 month shot?

[Tall_Allen in reply to JRPnSD]

I didn't know Lupron made 12-month doses. Many are substituting Eligard, which is generically equivalent.

That is true about the level of evidence. The Touijer study is level 2 evidence because there has not yet been a randomized clinical trial confirming it. What you have to weigh are these two choices - and only you can do it:

(1) ADT alone is definitely not curative, and the ADT is lifelong with the typical ADT side effects. Eventually, the cancer will become resistant to ADT, and you will have to move on to other systemic therapies that also have side effects.

(2) Salvage pelvic LN radiation with 2-3 years of ADT may be curative. If it is, you risk the side effects of lymph node radiation, and have to live through those years of ADT side effects. The upsides are that if you are cured, no further therapy is required and the ADT is for only a limited term. If the treatment does not cure you, you are in situation #1 above.

In the end, only you can assess the risks you are willing to take. It doesn't matter what the doctors (or I) would do in your shoes because we're not in your shoes.

[JRPnSD in reply to Tall_Allen]

Thank you. Your summary statements are very helpful. Much appreciated.

[JPnSD in reply to Tall_Allen]

Final consult with the 2nd RO...doing ADT for 2/months then SRT. ADT expected to run 2-3 years. Lupron availability is now an issue in this area.

[elvismlv123 in reply to JRPnSD]

ADT is not a monster decision to be feared. Its a side show and extremely effective. I am 16 years out with finasteride only. Doctors can be pains in the ass trying dissect options to a gnats ass. Just take the 5mg of Finasteride once per day and you will be happy. There are herbals out there that will mimic Lupron. Doctors will never give you their blessing on this. You have to take a stand based on good info and history of success.

[garyi]

Concur with Allen....no surprise

The major question I would ask of your PCa experienced RO is "how soon can SRT start?"

Good luck!

[JPnSD in reply to garyi]

Yeah...already did that one. Thanks.

[Justfor_]

First you double check.

My first test, 5 weeks after RALP, was 0.02. Then at 3 months, boom to 0.12! Retested same blood sample came out 0.13. Following, 0.02 for the next 5 months. Currently, 16 months post RALP, 0.05. After this sad experience I take monthly tests interleaving two different labs and of course have banned the one that was cursed with this 0.12. My future plans are to take a PSMA PET/CT after I have a confirmed >0.1. I have tried hard to find a RO that will adjust my irradiation plan according to the findings, or lack thereof, of the PSMA scan. You don't find them easily, the vast majority of them have a one-size-fits-all approach. It also has to do with the vintage of the hardware (linac) and planning software available to them.

Did I tell you to double check?

If yes, try a second lab. The same lab "golden" rule is valid for the assessment of the PSA rate of rise. You are currently trying to establish the most probable ABSOLUTE value (apples and oranges).

[j-o-h-n]

Two opposing views from two doctors? Oh my word, I think I'm gonna faint.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/26/2020 11:08 PM DST

[JPnSD in reply to j-o-h-n]

Yeah....well...thanks for that. But not getting the humor.

[j-o-h-n in reply to JPnSD]

Sarcasm.......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/28/2020 2:54 PM DST

[MateoBeach]

The cancer is relentless and will continue to spread as that one node proves. Get the SRT now including pelvic lymph nodes. ADT supports the effects of the RT. Together not as an alternative!

Whether just for six months or for two years to me is not entirely clear with your low PSA. But you have six months to consider it further. Get the first shot. If needed you can maintain castrate T with estradiol patches. treat it hard and early IMO, since you still have a possibility of cure.

[Hidden]

First step. Take an injection of Lupron or Eligard. I did every three months with monthly PSA and T. Then take about treating the nodes. Talk to another RO that specializes in prostate cancer. Take their recommendation.

When the time comes for a medical oncologist, look for one that specializes in prostate cancer, not lung, breast, etc. someone at the top of their game. I found mine is major medical school teaching hospitals and research. I was very pleased on the academia side of treating this bastard. Good luck.