My MiraDX test came back high risk after taking for possible sbrt treatment at UCLA. Dr. Kishan recommended 20 treatments to be done for 4 weeks M-F rather than standard 5 treatments done every other day. There is limited info on the internet about this and other RO’s I spoke with say they need more data on this testing before they can give solid guidance. Does anyone have any thoughts on this test? It seems that only UCLA is using this to guide treatment at this time.
Thanks,
Nick
It's a clinical trial.
Thanks for the response Tall_Allen. Do you feel that there is enough data so far to guide treatment? It’s also not clear to me what time range is considered late grade. Is this anything greater than 6 months/1 year?
pubmed.ncbi.nlm.nih.gov/349...
No, that's why it's a clinical trial and not standard-of-care. "Prospective studies are warranted to further validate these results."
Late-term is usually anytime after 3 months.
Thanks Tall_Allen. I was strongly leaning to sbrt treatment using either View Ray or Cyberknife but the high risk result came back as a surprise. Apparently 92% will come back low risk so I didn’t get a warm fuzzy feeling when I landed with the other 8%. Ucla seems to have high confidence in the accuracy of this test but I want to feel fully comfortable with my treatment plan. Since the evidence for this type of testing is still evolving, I still need to determine how much weight I want to place on this for my particular case. I have been reading your previous newsletters regarding sbrt treatments and their solid long term outcomes which still has me leaning towards pursuing sbrt treatment.
There is no difference in effectiveness between 20 treatments and 5 treatments, but if 20 treatments is potentially safer, I don't understand why you would insist on 5 treatments against Kishan's advice.
Some additional factors come into play due to my location and my insurance coverage. I need to investigate this further but there is also a View Ray machine in Portland Oregon which is close to where I live. It would be easier to do 20 treatments here than at UCLA. When I inquired about it , they told me that insurance may be an obstacle because they haven’t done that before with View Ray. Im still waiting for insurance pre-determination/pre authorization results for treatment at UCLA to determine what my final out of pocket cost willl be.
It is a mistake to think that technology is more important than your RO.
Do you have any recommendations for RO’s in either Oregon or Washington?
I have also consulted with Dr. Meier at Swedish hospital in Seattle.
What's wrong with Meier?
From Riku100 bio -- " ... I was diagnosed with prostate cancer on 4/5/23. Gleason score 3+4 in 5 out of 12 cores ... "
Please!!! don't rely on biopsy results to guide your treatment protocol if you had a random TRUS biopsy. TRUS is OLD SCHOOL and inadequate for making life impacting medical choices since very little of the prostate is sampled. At least request a 3TmpMRI
Thanks addicted2cycling. I did get a 2nd opinion from John Hopkins on my biopsy so have high confidence in my Gleason score and have had a 3TmpMRI that confirmed the tumor location. Since it is a random biopsy, that does not mean it got the “worst” sample but given my DRE was normal and my PSA is 4.17, I feel im in a relatively good place for guiding my initial treatment. I recognize it’s not perfect (is psma necessary for one more datapoint?) but im okay with moving forward.
I had the test before I had 5 treatments at MSKCC. I arraigned it independent of my Drs there as I had less than perfect urinary function and wanted as much information as possible. Mine came back moderately low risk so I had the treatments and 6 months later my urinary function is nearly as it was though I do take 1 Tamsulosin a day.
So for me the test was accurate but this is clearly anecdotal. I believe this trial has been going for a couple of years so Dr Kishan must have a lot of data for guidance.
Thanks for the response Cdubu. Glad to hear that you are close to being back to pre-treatment level.
I also came back high risk with Prostox and went with the 20 treatments. My primary treatment goal, besides treating the cancer, was low risk of long term SEs. Didn’t want to risk the chance that Prostox was not accurate.
Thanks LongevityAT. Did you pursue the 20 treatments with Miridian? How did you do after your treatment?
Yes, I did 20 treatments on ViewRay at UCLA under Kishan. My last treatment was April 5th and all is well. I did have a reduced urinary flow starting after the 2nd treatment and Kishan had me take Ibuprofin 3x day and it resolved fairly quickly (I kept taking until about 2 weeks after final treatment). So far, no other noticeable SE's other than my stool is more on the loose side than on the firm side, so if I pass gas, I need to be certain it is gas! All in all I'm very happy with my treatment choice.
Just for additional info as you make your decisions, I did get SpaceOar, but more to appease my wife's concern than mine. Also, I'm on ADT for 6 months.
One downside of radiation treatment with a high risk Prostox result is that Kishan did not want to radiate the lymph nodes, as he usually would do. Was trying to keep the dose to the necessary minimum. He thinks I have about a 15% chance that microscopic cells are in the lymph nodes now and the pc will return at some point. But that also means there is an 85% chance the 20 sessions cured me!
Hello Longevity,
Saw your comment about SpaceOAR, sounds like you had some reservations about going that route? Any reasons?
I wasn't opposed to SpaceOar, I just wasn't convinced it would make a difference. My doctor indicated that his patients, with or without SpaceOar, had not experienced rectal issues. However, I went with it more as "insurance" since my main criteria for treatment selection was avoiding, as much as I could, long term SE's.
not sure if you saw this so sharing
ascopubs.org/doi/pdf/10.120...
My hubby did Sbrt 5 months ago and is doing ok. Didn’t take this test. All the best to you.
Thanks MyStarburst. I hadn’t seen that doc yet so thanks for sharing. All the best in your husband’s continued recovery as well.
I took the test and got a positive result but he still recommended 20 sessions for other reasons. I was under the impression that Kishan had developed the test but I could be wrong. I ended up getting 20 sessions at U of Chicago when he told me the View Ray did not offer any benefit when used for 20 sessions.
Thanks Scout4answers. I need to follow up with UCLA but that was one of my questions if there was any advantage to receiving 20 treatments with View Ray. How have your side effects been since completing treatment?
very mild to non existent.
The two factors that I believe have kept side effects from radiation and ADT to a minimum are resistance training with free weights and Being loved and loving in return. The second involving a lot Luck, focus and hard work.
Glad to hear that. What machine did you end up using?
Three studies from the company site. Not sure if there isn't anything in there that has not been discussed in earlier posts, but never know what you might find.
Kishan AU, et al. Long-term outcomes of stereotactic body radiotherapy for low-risk and intermediate-risk prostate cancer. JAMA Network Open 2019;2:e188006.
Weidhaas, JB, et al. MicroRNA-based biomarkers of the radiation response in prostate cancer. Journal of Clinical Oncology 38, no. 6_suppl (February 20, 2020) 163-163. DOI: 10.1200/JCO.2020.38.6_suppl.163.
Kishan AU, et al. Germline variants disrupting microRNAs predict long-term genitourinary toxicity after prostate cancer radiation. Journal for Radiotherapy and Oncology 2022;167:226-232. doi: 10.1016/j.radonc.2021.12.040.
I hear ya, not easy to figure out sometime; I just like to have some data or numbers to help to make a decision.
My Prostox test came back high as well. What did you decide to do?
I ended up doing 20 sessions at UCLA with Dr. Kishan. I completed these at the end of September 2023 with Viewray and had minimal side effects during treatment. These resolved within 3 or 4 weeks after completing radiation and am feeling back to normal at this time. The entire care team was great and the whole experience exceeded our expectations. We ended up staying at the Tiverton and were able to explore the LA area during our time there. Best of luck in whatever you decide to do!
I had a telemedicine call with MSKCC RO yesterday, and I first had to speak to a nurse and then a resident doc before speaking to Dr. Gorovets. When I asked the resident about the Prostox test, he first looked at me blankly, then said, "I've heard of it, but don't believe that it's used here". Wonder if I should be pressing this further or opt for the non-SBRT treatment to be safe.
It’s one more data point on helping you determine which treatment is best for you. My preference was to only have 5 sessions rather than 20 but unfortunately my results came back high risk. I do feel fortunate that I had the prostox test to help guide my radiation treatment decision.
I have an appointment with Dr. Gorovets next month and your comment about the residents his lack of knowledge about Prostox is concerning. What was Dr. Gorovets opinion/knowledge? What has been your experience with him and MSKCC? Should I be looking elsewgere?
I’ve had subsequent appointments with Dr. Gorovets and his team and feel very comfortable moving forward with them. I asked Dr Gorovets about Prostox on my second telemedicine call with him and it seems like it’s not commonly used at MSK at this point. I started Orgovyx 2 weeks ago and have fiducials and space oar procedure in a few weeks. Feel free to DM me.
ViewRay SBRT stock is now at .60/share
Any experience with Ultra-hypofractionated beam tmt. (5 fractions) with HDR Brachy Boost?
No more active surveillance for me
Newly Diagnosed high risk PCa at age 52
