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Posted 3/30/2021 2:11 PM (GMT 0)
Tried surgery (2018) and still had a PSA. Tried radiation (2019) and still had a rising PSA. Next blood draw is tomorrow with urologist appointment next week. Last time I saw my urologist (March 2020), he mentioned Lupron and gave me a book to read on ADT. Not sure whether to start ADT or put it off. Currently experiencing no symptoms and since ADT normally only works for a few years and then we become CR I wonder if I might be better off waiting to start. Any opinions on whether it is better or worse to delay until I encounter symptoms? Should I get other tests or scans before proceeding to more treatment?
Posted 3/30/2021 3:19 PM (GMT 0)
Well, Lupron(ADT) is pretty variable in how long it will work. 2-3 years is the average.
I myself have been on intermittent ADT for 7 1/2 years and it's finally wearing out.
There are men who have been on it longer.
Posted 3/30/2021 4:23 PM (GMT 0)
Bill, if I were in your position, I’d be moving on from my urologist, and seeing a medical oncologist who’s practice is focused on PC.
There is no standard answer to your question, there are many opinions. But an MO can point u in the right direction and work with you to make a shared educated decision
Posted 3/30/2021 5:23 PM (GMT 0)
As you can see from my signature, I'm in a similar situation. Your urologists work is done. At the very least you should be discussing with your RO, hoping he/she has in-depth PCa experience. If not start hunting for an MO who specializes in prostate cancer and persistent PCA. Be forewarned, they aren't easy to find.

That's a big jump you had last September. The experts at Mayo Clinic are 'only' about 900 miles away, and if I'm reading your 9/20 PSA correctly, at 2.3, that BCR, and you need to be at Mayo now.

Your urologist should have done lots more than hand you a book. uPSA test every few months, and a scan would have been a fine start. IMHO, ADT is not your answer right now, would cloud the problem, and seems like an easy answer from a urologist, you NEED to fire.

Good luck, and get active!

Post Edited (garyi) : 3/30/2021 11:38:51 AM (GMT-6)

Posted 3/30/2021 11:17 PM (GMT 0)

Hello LARGEBILL68 ~~~

Wanting the best for you ...

The RED FLAG in your post is the missing word ONCOLOGIST, as others have noted.

My original urologist only talked about the next LUPRON shot for me --- which had to be ordered from the oncology department, anyway.

I asked for more treatment ideas, but he was a "one trick pony" --- and even refused to try anything else but LUPRON.

I then told him I was transferring my care over to the oncology department. No looking back!

When I met my oncologist, he found LUPRON wasn't even suppressing my testosterone very well, which was needed to help keep my PSA controlled --- and I ultimately switched to ZOLADEX instead.

A simple testosterone test showed the need for that!

Make sure you get a testosterone reading, to make sure your ADT shot is working to its greatest advantage.

My oncologist was visionary --- he got a new treatment plan going from the minute I met him. It was incredible.

So ---- I know what it's like to reach a brick wall ...

I needed an oncologist who could find doors and windows in that brick wall ---- and that, my good sir, is my sincere wish for you, as well.

You need a doctor with a forward-thinking vision of treatment possibilities --- a doctor who is proactive and insightful!

I like the old saying that states, "When you want your story to change, sometimes you gotta' turn the page."

With my very best, sent to you ~~~
CYCLONE ~ # Iowa State University
Posted 3/31/2021 1:45 AM (GMT 0)

Cyclone-ISU said...
I needed an oncologist who could find doors and windows in that brick wall ---- and that, my good sir, is my sincere wish for you, as well.

The best advice from someone who has been there.

You need a medical oncologist at this point. Specialized skillset. Waaaay different than a urologist.
Posted 3/31/2021 12:15 PM (GMT 0)
Thanks for all the replies. I'll look for an oncologist to take over my treatment plan.
Best wishes to all in this fight.
Bill
Posted 3/31/2021 12:36 PM (GMT 0)
All I can say is I was in that the same situation. Had my radiation, but my psa started to rise again.... I question myself if putting it off caused it to metastasize. But now on ADT for 9 months it isn't spreading and I am hoping my nodules are gone when I have my next CT.... Side effects for me are minor
Posted 3/31/2021 12:47 PM (GMT 0)
Remember, the studies showing times to refractory are measured by median not by average (mean). These can be significantly different. The studies give you direction and guidance, but don’t tell you what exactly you will experience. Some men start with disease that is not ADT sensitive and other men use ADT successfully for more than a decade. Just because a GnRH drug like Lupron stops working doesn’t mean that other forms of ADT won’t work like the blockade drugs Zytiga, Xtandi or Erleada.

Get with a great medical oncologist that specializes in PCa. The work of your urologist and radiation oncologist is over as their efforts were unsuccessful to cure. Now you must manage and control. That is the work of the medical oncologist.
Posted 3/31/2021 12:52 PM (GMT 0)
While I agree generally with advice to move to MO, there are UROs who are experts in treatment of advanced prostate cancer. Eric Klein at Cleveland Clinic to name one.

Post Edited (Duck2) : 3/31/2021 6:55:22 AM (GMT-6)

Posted 3/31/2021 1:17 PM (GMT 0)
Bill, Cleveland Clinic is not very far from Cincinnati and enjoys the reputation of being one of the very best. All of my followup with CCI has been virtually and I’ve found it works very well. Good luck and keep us posted since we all learn from one another’s experience. Terry
Posted 5/1/2021 7:27 PM (GMT 0)
JNF; what MO do you use? I'm about 2 hours south of you in east central AL. I have an appointment with an MO with Urology Clinics of AL in Birmingham on Monday but don't know much about her.
Posted 5/1/2021 10:22 PM (GMT 0)
Hi Edwardo43.

I am still with my urologist as I am still in remission from my initial treatment. The medical oncologist I would likely use is Oliver Sartor at Tulane in New Orleans. If that happens, I would also ask my urologist for suggestions in Atlanta. One I know is Vaughn Kasabian. He is an ontological urologist. A bit different than a medical oncologist, but they do the same things. I would think that you should have some good choices in Birmingham, but I don’t have any suggestions.

Be sure the oncologist primarily works on prostate and breast cancer. These are the hormonal cancers. If the oncologist works on everything then they won’t be a PCa specialist. You want the PCa specialist. You need someone that works PCa everyday.

Best wishes.
Posted 5/1/2021 10:42 PM (GMT 0)
Edwardo, what is the name of the oncologist you are going to see?

Is it Dr. Joelle Hamilton?
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