Meeting with a radiation oncologist for the first time this Thursday.

[searchingtom]

Meeting with a local radiation oncologist for the first time this Thursday. Quick recap - Robotic radical prostatectomy in Oct 2018. PSA has risen to .38 effective a couple of weeks ago. Decipher RP score was .37.

Here are the questions I plan to ask them (they are not an academic clinic):

1. Do you see value in getting a 68Ga-PSMA-11 PET/CT scan (offered by UCLA) versus the Auxium scan? UCLA requires that the "Treating radiation oncologist intends to incorporate 68Ga-PSMA-11 PET/CT findings into the radiotherapy plan." Have you done this before? Are you capable of doing it?

2. My primary focus at this point is the potential for a cure. What treatments best fit this focus? (prostate bed only, prostate bed and pelvic area, ADT at the same time, etc.). What would be your approaches (I understand that the scans could be decisive here).

3. My second focus is minimizing the GI and GU morbidities. What approaches can be used with the state of my condition to minimize any impact? What is your opinion on proton therapy and its possible impact on minizing morbidities? I also understand the total amount of radiation is a factor.

Am I asking the right questions?

What might I be missing?

Thanks in advance !

tom

[Tall_Allen]

That's a good set of questions. Here are some more (adapt as needed):

prostatecancer.news/2017/12...

[searchingtom in reply to Tall_Allen]

Excellent! Thank you!!

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

Check his fingernails.... if they look burned.... see a new R.O.........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/25/2020 10:43 PM DST

[timotur]

Ultimately, you need to rule out M1 to achieve a cure. That leaves determining LN status to determine if there are local and/or distant LN+ nodes. If local LN+ nodes only, that sets up a potential cure with salvage radiation. A PSMA scan is your best tool at this point to get the picture and make treatment choices.

[Schwah in reply to timotur]

Agreed. I just had a psma scan at ucla last week. As far as I know, all you need is a prescription from your oncologist and $2800. There seems to be a little doubt that this is the best imaging test available right now.

Schwah

[timotur in reply to Schwah]

Yes, I had the same PSMA scan at UCLA in March 2019, before I started ADT, and it found a positive mesorectal LN, which was useful in planning the radiation field mapping of my IMRT procedure after HDR-BT. Wouldn’t have known about it otherwise as it wasn’t determinable from CDUS or staging MRI.

[Hidden]

Most important question is #1. If he/she starts mumbling about it, find another one.

Question #2 is a trap-question. Any answer other than "We will know better after the PSMA scan" defeats any positive answer to question #1.

Question #3 is redundant if there is NO such a gantry available to him/her.

The real question that, unfortunately, can NOT be asked is:

What is your priority in deciding upon my irradiation plan?

a) To cover yourself against the law by implementing existing guidelines, or

b) To plan guided by the PSMA scan, provided that the equipment and planning software at your disposal permit this option.

Please update us after your meeting.

[searchingtom in reply to Hidden]

Thank you very much for our response as i found it elucidating. I will update after my meeting tomorrow. I have my initial consultation with an academic hospital (University of Wisconsin at Madison) and their urology department (Dr. David Jarrard) on Monday.

[fluffyfur]

I would find out what type of equipment they use for radiation and do they have any bowel/bladder procedures in place prior to each session. I'd also ask how many sessions they recommend for you and why. Some doctors are doing as low as 66 gy and some as high as 72 gy. TA posted a link a while back--but seems like chance of remission increases with a higher dose.

I ask about bowel bladder protection as my husband just finished SRT. His bladder was measured via ultrasound prior to each session to make sure it was at the adequate level. His twin brother had radiation as well and his bladder was never checked. Brother now has bladder strictures.

[searchingtom in reply to fluffyfur]

Thank you so much for this information. Very good to know.

[fluffyfur]

Just found the link from TA.

prostatecancer.news/2016/11...

[Jmr11820 in reply to fluffyfur]

How’s it going. All done with radiation?

[Jmr11820 in reply to fluffyfur]

Oops. Sorry i obviously hadn’t read the post. Glad he’s done.... waiting 6 months fir PSA, that right?

[fluffyfur in reply to Jmr11820]

Yes. He finished about two weeks ago. Waiting for that six month PSA. He has been tired but started a clinical trial for fatigue so that seems to be helping.

[caltexman]

I have been on the same journey as you. My RP was in July 2018. My first PSA after surgery was .5! I had the PMSA Pet scan at UCLA in March 2019. The results were positive for recurrence in the prostate bed. I had radiation in May-July 2019 and have had few side effects other than ED. I recommend that you get the pelvic radiation including lymph nodes plus 6 months of ADT ASAP. The window for cure is short.

[George71 in reply to caltexman]

I had RP in march 2016 -- PSA 0,03 post surgery and micro mets detected in near by lymph nodes --- nothing but Avadart and various supplements till now August 2020. Currently PSA 1.3 only one spot visible in PSMA scan (in prostate bed area.. I'm wondering if RT to the single spot be a cure after such a long time. any thoughts? Thanks in advance.

[Hidden in reply to George71]

Have a look at this video:

youtube.com/watch?time_cont...

According to the study presented in 32:15, for every 0.1 increase in PSA the probability of relapse free survival gets diminished by 2.3%. Your quota at 1.3 is ~35%, as I can tell from the graph. Note that the best performance is estimated at ~70%, which means that you have spent half of you chances. I also noted that your average PSADT is ~10 months, which makes you sit on the fence between a mildly and not aggressive cancer.

To conclude my analysis, I would say that you should go on with sRT.

There is also a VERY experimental path that two users of this forum have already taken (upfront after BCR of RP) : Lu177. If your PSMA avidity is sufficient, you have the financial means and can travel during these difficult times, you may leapfrog SoC by 5 to 10 years.

[searchingtom in reply to caltexman]

Thank you for your response. Did you have the Decipher RP test ? Can you give me more specifics please around the type of radiation treatment, duration, total amount of radiation, was it SBRT ? Was it hypofractionated ? Thanking you in advance,

[Jmr11820]

I’d think your low DECIPHER would be a source of comfort and also a strong component in treatment considerations. My high DECIPHER was the reason I sought RT at very low PSA of .03. Keep us posted.

[searchingtom in reply to Jmr11820]

I will keep posting as I find you all SO HELPFUL and COMPASSIONATE

[JPnSD in reply to Jmr11820]

So what does the DECIPHER test tell you exactly? I had RP 8/19 (year ago), all clear but 1 lymph node with microscopic detection, 2nd Pathology review from Epstein at JH was just done...same as 1st, PSA was undetectable at <.01...now at 12 months...stable at .08 for 3 months. I anticipate my request for DECIPHER will be refused by insurance again....need some info/data for the appeal I will have to file. No other treatments to date per URO, MO and RO. Auxumin in June was negative.

[rscic]

#1 -- I think PSMA needs a PSA of 0.5 to reliably detect mets. PSMA DOES detect mets other scans do not .... if it is recommended I would do it.

#2 -- I would suggest radiating the prostate bed and pelvic area including the iliac areas. I am told there are difficulties with overlap areas if one radiates just the Prostatic bed and later has to go back and radiate the pelvis.

ADT along with radiation depends on a number of factors and there are situations which are controversial as to whether ADT is necessary. I would recommend discussing this with your MO & maybe your RO too.

#3 -- My second focus is minimizing the GI and GU morbidities. -- My RO told me he is a big believer in having another purpose/goal during RT. During RT I trained for an IRONMAN Triathlon (2.4 mile swim + 112 mile bike + 26.2 mile run = 140.6 miles) during my RT and completed my event approx 6 week after finishing RT. I had no complications. Complication rates are low with RT.

Good questions all!!!

Rick

[Jmr11820]

It’s a genomic test using a sample of your tissue from prostatectomy or biopsy to measure the aggressiveness of your disease. It tells you your risk of metastasis at 5 years and PCSM at 10 years. It’s helpful in determining how aggressive you need to be for additional therapy. In my case I started RT early after prostatectomy because I was DECIPHER high risk.