My turn for advice: Diagnosed August... - Prostate Cancer N...

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My turn for advice

diatom profile image
22 Replies

Diagnosed August 2018. Gleason 9, biopsy 12 of 12 positive. PSA was 38.

Had external beam radiation and brachytherapy with 2 years lupron. PSA was undectable during this time.

6 months after stopping lupron the PSA went to 0.8. Now 6 months later it is 3.8.

Got PET PSMA results back today with spread to lymph nodes in groin.

Starting on casodex and lupron with scheduled biopsy..

Would it be advisable to treat prostate with cryotherapy or brachytherapy.. Are the casodex and lupron the best medication for treatment and how should I treat the lymph nodes..

Thanks for any and all advice.

Dan

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diatom
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22 Replies
Magnus1964 profile image
Magnus1964

Two questions, why did your doctor stop Lupron and why are you getting a second biopsy? You Gleason score won't change, so a second biopsy is useless and stopping Lupron while it is still working I think is a wrong move.

diatom profile image
diatom in reply to Magnus1964

Looking at it now, you’re right. That was the plan of my oncologist..

Radiation and 2 years lupron

Magnus1964 profile image
Magnus1964 in reply to diatom

I would get back on Lupron and add casodex.

diatom profile image
diatom in reply to Magnus1964

Thanks. That’s the plan.

Boywonder56 profile image
Boywonder56

Lupron + aplutimide.....and im with mag ...why did you stop if you kept the walnut....

diatom profile image
diatom in reply to Boywonder56

I didn’t know any better.

Tall_Allen profile image
Tall_Allen

So the good news is that you were successfully treated for prostate cancer in your prostate and pelvic lymph nodes. The bad news is that some cancer had already escaped to your groin lymph nodes, which means the cancer is systemic (stage M1a).

There is nothing to treat with brachy or cryo anymore. IDK if there is any benefit to irradiating the groin lymph nodes, but it might risk lymphedema.

Systemic therapy with Lupron is certainly your best therapy right now. Maybe the biopsy will indicate a direction for another therapy in addition to Lupron. Some trials have successfully added a short course of advanced hormonal therapy or phenelzine.

diatom profile image
diatom in reply to Tall_Allen

I’m not sure my prostate was successful treated as it has enlarged again which I take as due to cancer growth. What do you think about taxotere?Lu177 PSMA

Tall_Allen profile image
Tall_Allen in reply to diatom

Enlarged doesn't mean cancerous.

diatom profile image
diatom in reply to Tall_Allen

What do you think about this study. 2021Abiraterone+docetaxel+ADT for newly diagnosed metastatic men beats docetaxel+ADT (or abiraterone+ADT)

(

Schwah profile image
Schwah in reply to Tall_Allen

Why wouldn’t you advise him to start Zytega and or chemo too. Is he not newly metastatic? Even if not, wouldn’t that probably be best since it’s spread?

Schwah

Tall_Allen profile image
Tall_Allen in reply to Schwah

No, he is recurrent, not newly metastatic- different animals. And the groin LN was only discovered on a PSMA PET/CT. The evidence so far is that Lupron is a good choice for recurrent PCa. What I wrote was "Some trials have successfully added a short course of advanced hormonal therapy or phenelzine." Certainly not chemo.

diatom profile image
diatom in reply to Tall_Allen

Ouch! I have just entered “The Walking Dead” club.

esperandrich profile image
esperandrich

Good info from the other comments but if you haven't done it yet I would look at going to NCI designated cancer center. Maybe you have already. Just an idea.

diatom profile image
diatom

That’s my thinking also. I’m in Little Rock.Thinking of going to MD Anderson in Houston.

Thanks

ADTMan profile image
ADTMan

Does anyone disagree that genetic testing would be helpful?

diatom profile image
diatom in reply to ADTMan

What type of results would I look at?

ADTMan profile image
ADTMan in reply to diatom

Certain types of immunotherapy are determined by genetic testing. Also, they may be able to tell how aggressive the disease is which may help to determine whether chemotherapy would be helpful. But, certainly hormone therapy for hormone sensitive disease is appropriate. How many mets do you have? If its 1-2 they should be able to use SBRT to get rid of it without a lot of systemic therapy.

Max225 profile image
Max225

Also Gleason 9 here. Still on Lupron for 24 month ending on January 2022. Also got RT and HDR Brachytherapy. Did you have your lymph nodes radiated as well?

diatom profile image
diatom in reply to Max225

Hi Max

No I didn’t.

I probably had lymph node involvement when I was diagnosed but didn’t have the more sensitive PET PSMA scan available 3 years ago.

I recommend 3 month PSA testing instead of 6 months since we have aggressive cancer. I would have restarted lupron sooner if I had been tested every 3 months instead of 6.

Hope you have responded well to your treatment.

I restarted my lupron yesterday and hope I will respond well to it for several more years.

Dan

Max225 profile image
Max225 in reply to diatom

Thank you, diatom. My PSA has remained undetectable so far, but I have a 40 - 50% chance for BCR. I’ll see what happens when Lupron stops. Thanks for the good wishes. Hang in there, there is always hope. Best of luck to you.

bigbassman profile image
bigbassman

My onco added Avodart to Lupron and Casodex for 18 months. I had RT 38 sessions plus another 10 focusing on pelvic lymph nodes, then low dose brachy. I was G8, 9 of 10 samples. PSA WAS 20 at max. Note: several DREs and Prostate USs wete “normal” before Dx. PSA has been undetectable for 4 years now. Of course, each patient’s disease and treatment outcomes are unique.

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