First phone visit with academic hospital on my biochemical recurrence post robotic radical prostatectomy (University of Wisconsin - Madison)

[searchingtom]

Met with Dr. David Jarrard from UW Madison today over the phone. He is recommending the Axumin scan and I will most likely proceed with that as my next step. UW Madison has a similar perspective to my local urologist (Dr. Robert Vlach at the Wisconsin Institute of Urology) of having the scan, and then assuming the scan is clear, proceeding with radiation to the prostate bed and doing ADT concurrently. It seems to be the default standard approach in Wisconsin even though some of the literature suggests ADT does not add value given that my PSA is .38. They both stated that ADT "conditions" the cancer cells to better respond to the radiation. I will also call my Froedtert academic hospital as well and then make a decision. It is interesting that the Decipher RP score does not seem to factor into any of the therapy approaches.

All feedback welcome.

[Tall_Allen]

I don't understand why you are taking the advice from two urologists who have no experience treating with salvage radiation. Is there any reason that you can't talk to a radiation oncologist (Paul Harari?)? I assure you, it is not the default standard approach anywhere to give adjuvant ADT when a patient has low PSA and low Decipher scores. I strongly suggest you talk to a radiation oncologist and email him these in advance of your meeting:

jamanetwork.com/journals/ja...

redjournal.org/article/S036...

urotoday.com/conference-hig...

[searchingtom in reply to Tall_Allen]

Sorry if my previous posts weren't fully clear as I did talk to a radiation oncologist at ThedaCare in Appleton Wisconsin - Dr. Michael Ray. His recommendation also was to administer ADT for 8 weeks prior to starting the radiation therapy. The Decipher score seems to have little impact on the recommendations for some reason. I will be talking to a radiation oncologist at UW Madison after the Axumin scan. I also will be following up with Froedtert (an academic hospital near Milwaukee).

Thank you so much for your links. I will read them and forward to my oncologists for comments.

[Tall_Allen in reply to searchingtom]

You may enjoy this video interview with Feng.

"And so for example, patients with high Decipher® score, high PSA, they should definitely get androgen ADT, androgen directed therapies [with SRT}. Patients with low Decipher® score, low PSA should, in my opinion, not. "

urotoday.com/video-lectures...

[searchingtom in reply to Tall_Allen]

Awesome. Thank you for this. I will check it out.

[JPnSD in reply to Tall_Allen]

Thank you so much for the coaching you provide to all of us. I have also noted the articles you highlighted given my situation is very similar (1 year post RP, < .001,10/2019 and now PSA at .08 and holding for 3 months (following Zinc protocol in Costello article since 7/15/20), received Epstein's 2nd opinion last week...nothing to add to original observations of 4+5 (grade Grp 5) for Dom. nodule, other than 3+3 for 2ndary nodule (Grp 1). Overall -organ confined - pT2(confined) and pN1 Metasasis in 1 regional lymph node (metastatic prostatic adenocarcinoma with ductal features (8 mm) in 1 of 4 lymph nodes). I am awaiting submission of tissue for DECIPHER Test (Requisition submitted 8/26).

I truly appreciate your feedback on the LA support call.

[Tall_Allen in reply to JPnSD]

I think your positive lymph node puts you in a different category altogether. Also, the ductal. There is just no question that you require salvage radiation with long-term ADT.

[Hidden]

I too did adt prior to 8 weeks radiation ..and it’s worked so far over four years in clear status . Try to prevent osteo issues by doing weight bearing exercises. Also eat for heart heath . Adt promotes muscle and bone ..loss Working out and eating right can help much .. It’s a sound plan ... do anything to boost your immune system now . Adt should assist the rt in effectiveness.. good luck Tom .

[searchingtom in reply to Hidden]

Thank you for your comments Whimpy-p. I want to make the most informed decision that I can and contributions like yours are invaluable. Take care!

[Hidden in reply to searchingtom]

I can only wish that I had found this cite upon dx. I didn’t . I found it three years after .

[searchingtom in reply to Hidden]

One additional question please. Which ADT protocol did you undergo? What it Lupron? How long were you on it (3months)? How bad are the side effects? Thank you so much.

[Hidden in reply to searchingtom]

My first shot was a one month shot of firmagon ., then onto tri-monthly Lupron shots for 18 months . That I teamed up with tak-700 a now defunct adt drug drug that I’m still on today . I did an orchiectomy 9-17 allowing me to drop the Lupron shots . I’m still on the tak-700 today . The only one of us on HU . I was hit hard by muscle and bone loss with the accompanying pains and aches . I went through depression and suicidal thinking on and off for three years. Sam-e helped me get out of lethargy and helped me to have a touch more energy . I felt like I was the worst case scenario with all of the adt side effects. I fought self the entire time. Mad at myself for throwing my life away. Then After imrt and double adt I went into an undetectable mode . I’ve stayed here over four years.. some men here say they have breezed thru adt .? Others like me got hit hard. Because I couldn’t lift more than 10 lbs for almost two years ( due to the tubes out of my kidneys) I was hit hard by osteopenia. This is now a major issue for me . If you can do any weight bearing exercises? you might Lessen or avoid avoid the osteo problems. ?? You will do what best for you . I want to put the pc to sleep for decades. 🙏

[searchingtom in reply to Hidden]

Thanks for your forthrightness. This is humbling and scary to say the least. My radiation oncologist really underplayed the side effects.

[Hidden in reply to searchingtom]

They do that . Every treatment choice will have side effects. Drs concentrated on ridding the pc . Side effects are just collateral damage to them . It’s up to us all to try to negate these side effects . Healthy diet and much exercise is the path to do so . Good luck 🍀

[marlins1]

Perhaps getting concurrent ADT is overkill, but I am glad I did it. I suspect you will too.

[Hidden in reply to marlins1]

Maybe better over kill than under kill.? Save the host but destroy the pc !😷

[Peppertree602]

I recommend speaking with Dr Kilari MO and Dr Coleen Lawton RO at Froedtert. Kilari I feel thinks out of the box.

[searchingtom in reply to Peppertree602]

Thank you. I have a message into Froedtert right now. Keeping my fingers crossed,

[ImaSurvivor1]

I think the Axumin scan is a waste of time and money, given your PSA of 0.38. There are significantly better scans now, but even the best are unlikely to find any recurrent prostate cancer below PSA of 1.0 or more. A small percentage have been positive at around 0.5.

[searchingtom in reply to ImaSurvivor1]

Gotcha. Thanks for your comment.

[Hidden]

Hey Tom ! You’ve received some blunt answers . You will get the truth here. Keep asking and being proactive in this . Good luck !

[j-o-h-n]

Here I go again (regarding frying the bed):

I've posted before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also I don't know if this would apply to you but guys here recommend "A PADDLE" to be inserted for protection of parts of your body. Make sure you ask your R.O. about the paddle and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

J-o-h-n Tuesday 09/01/2020 5:09 PM DST