1. < Prostate Cancer

Third SBRT Opinion Worth It?

Posted by psychometric @psychometric, Mar 3 7:25pm

Paging Dr. Google...

Me:
Age 50, Gleason 7 (3 + 4), 0.56 intermediate risk, 6/12 cores, PSA 6.68, PSMA showed no metastasis to lymph nodes or bones, cystoscopy showed no obvious issues.

My dilemma:
The surgeon who did my biopsy recommended treatment (RP or RT), as did two separate ROs, all local to me in Louisville, KY. I'm leaning ever so slightly towards radiation but it's not a done deal.

The first RO suggested a 9-week course and the second RO recommended a 4-week course, both with 6 mos. testosterone blocker. Both ROs recommended against SBRT/Cyberknife due to existing issues (frequent urination, weak stream). Before seeing the second RO, the urologist at that center suggested that I might be a candidate for Cyberknife. Based on that, I decided to initiate a visit to MD Anderson for a tie-breaker, mainly thinking the MR-Linac might be an even better option than Cyberknife.

Now that both ROs here have frowned on SBRT, I'm not sure about traveling to Houston. I don't think it would be feasible for me to get a 'regular' course of treatment (RT or RP) there, but I guess it might be worth having them tell me for sure MR-Linac is not a good option.

I'm open to wisdom, experience, and informed opinions. Thanks.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

jeff Marchi | @jeffmarc | Mar 15 10:37am
In reply to @psychometric "I haven't noticed much difference so far after starting Oxybutynin. The prescribing urologist didn't mention how..." + (show)
@psychometric

I haven't noticed much difference so far after starting Oxybutynin. The prescribing urologist didn't mention how long it would take to see a change, but one of the ROs said it might take a couple of weeks (I'm on day 10).

My urologist and RO appointments at MD Anderson are both on March 31st. I'm actively compiling a list of general and RP/RT-specific questions.

Jump to this post

My doctor prescribed Myrbetriq for urgency and incontinence issues. I take it twice a day and it works really well. I never get up more than once at night, and I no longer wake up in the middle of the night feeling like I have to go. I noticed they mentioned high blood pressure as one of the issues. My blood pressure was 105/59 yesterday and that’s about normal for me. Another similar drug called Gemtesa Works pretty much the same I know people using it and they are really satisfied.

Myrbetriq has worked better the longer I’ve taken it, might be the same with Oxybutynin.

From the web
Myrbetriq works as well as oxybutynin, and it causes fewer side effects. It is expensive, however. In my case after Medicare $2,000 max it cost me nothing.

I’m mentioning these other drugs in case what you’re taking isn’t sufficient.

REPLY
vircet | @vircet | Mar 15 3:40pm
In reply to @clandeboye1 "@vircet First Gleason 3 + 4 = 7 IS NOT UNFAVOURABLE INTERMEDATE . Gleason 4 +..." + (show)
@clandeboye1

@vircet First Gleason 3 + 4 = 7 IS NOT UNFAVOURABLE INTERMEDATE . Gleason 4 + 3 = 7 is . And yes you have to wait several months 4 to 6 usually befforee for example a 2nd Confirmatoory Biopsy or other treatments . It allows for the swelling etc to get back to normal .
If you are considering radiation , consider the 5 Session Monotherapy SBRT treatment - Mon-Wed-Fri and Mon - Wed the next week . No hormones . Insist on a rectum spacer , SpaceOr even though with the MRI Guided , not the UT Guided machine you can get smaller margins down to 2mm as opposed to 5mm .
Good Luck.
p.s. Have to purchased and studied the highly recommended book on prostate cancer by Dr. Patrick Walsh " Guide to Surviving Prostate Cancer " .? or watched the the U - Tube videos by Dr. Mark Scholz or read the PROTEC T Report .?

Jump to this post

@clandeboye1 I also thought that t I shouldn't be "unfavorable intermediate." However, one of the other health professionals I asked indicated that notwithstanding GS 3+4 = 7, because 8 of 14 cores tested positive, it could be considered unfavorable. If only 6 of 14 were positive, certainly my GS 7 would be "favorable intermediate." Perhaps, even the professionals may look at my GS 3+4 differently? Yes, I read Dr. Walsh's book, the latest edition.

REPLY
1 reply
psychometric | @psychometric | Mar 16 5:21am
In reply to @gsd "Sounds like you're making good progress and collecting enough information to give you confidence as you..." + (show)
@gsd

Sounds like you're making good progress and collecting enough information to give you confidence as you move forward. Regarding Oxybutynin, an NIH article stated that many patients start to experience the effects in 2 weeks, with the full effect in a month. The most frequent side effect was a dry mouth, with the interesting caution to brush your teeth more frequently because the dry mouth increases the risk of decay. Keep us up to date as you learn more!

Best wishes!

Jump to this post

Yes, the dry mouth is very noticeable.

REPLY
heavyphil | @heavyphil | Mar 16 7:53am
In reply to @vircet "@clandeboye1 I also thought that t I shouldn't be "unfavorable intermediate." However, one of the other..." + (show)
@vircet

@clandeboye1 I also thought that t I shouldn't be "unfavorable intermediate." However, one of the other health professionals I asked indicated that notwithstanding GS 3+4 = 7, because 8 of 14 cores tested positive, it could be considered unfavorable. If only 6 of 14 were positive, certainly my GS 7 would be "favorable intermediate." Perhaps, even the professionals may look at my GS 3+4 differently? Yes, I read Dr. Walsh's book, the latest edition.

Jump to this post

Vircet, your biopsy results should be the poster child for the Decipher Test.
Unfavorable is usually treated with ADT if you choose radiation, favorable not so much.
A friend of mine just had his treatment changed by his RO because his Decipher came in very low. Best
Phil

REPLY
1 reply
vircet | @vircet | Mar 17 11:22am
In reply to @heavyphil "Vircet, your biopsy results should be the poster child for the Decipher Test. Unfavorable is usually..." + (show)
@heavyphil

Vircet, your biopsy results should be the poster child for the Decipher Test.
Unfavorable is usually treated with ADT if you choose radiation, favorable not so much.
A friend of mine just had his treatment changed by his RO because his Decipher came in very low. Best
Phil

Jump to this post

I have my 2nd appointment tomorrow with my radiation oncologist -- preparatory (planning for SBRT). I will ask about Decipher, if that's available in our location. Thanks.

REPLY
1 reply
vircet | @vircet | Mar 18 10:33am
In reply to @vircet "I have my 2nd appointment tomorrow with my radiation oncologist -- preparatory (planning for SBRT). I..." + (show)
@vircet

I have my 2nd appointment tomorrow with my radiation oncologist -- preparatory (planning for SBRT). I will ask about Decipher, if that's available in our location. Thanks.

Jump to this post

I did ask my radiation oncologist about Decipher Test. She said that in the cancer center where I will be treated, I have to qualify for it. I'm "not qualified" for Decipher, nevertheless she will see if there's a loophole to have it done for me.
I will start my hormone therapy next week, have an MRI and CT scan, have the markers put in place, then SBRT around the third week of April.
My SBRT prep may be somewhat different than the "pay for service" procedure in the U.S.; our treatments in Canada are tax-dollars-funded.
I will post updates later for purposes of experience- and information-sharing.
It isn't "one size fits all"; each one of us has to choose the treatment that we think is best for us individually.
(I chose SBRT partly because members of my family (including my children-in-law) are more worried, concerned about the side-effects of my initial choice RARP. I saw their point after weeks of research, readings on different treatment options.)

REPLY
1 reply
heavyphil | @heavyphil | Mar 19 6:52am
In reply to @vircet "I did ask my radiation oncologist about Decipher Test. She said that in the cancer center..." + (show)
@vircet

I did ask my radiation oncologist about Decipher Test. She said that in the cancer center where I will be treated, I have to qualify for it. I'm "not qualified" for Decipher, nevertheless she will see if there's a loophole to have it done for me.
I will start my hormone therapy next week, have an MRI and CT scan, have the markers put in place, then SBRT around the third week of April.
My SBRT prep may be somewhat different than the "pay for service" procedure in the U.S.; our treatments in Canada are tax-dollars-funded.
I will post updates later for purposes of experience- and information-sharing.
It isn't "one size fits all"; each one of us has to choose the treatment that we think is best for us individually.
(I chose SBRT partly because members of my family (including my children-in-law) are more worried, concerned about the side-effects of my initial choice RARP. I saw their point after weeks of research, readings on different treatment options.)

Jump to this post

Well, if you are already decided on SBRT, the Decipher isn’t going to be a decision maker for you. No worries.
In Canada you probably have to have a known genetic mutation like BRCA1/2 to qualify. Cheers,
Phil

REPLY
crusader76 | @crusader76 | Mar 20 8:04am

Are they doing the Barrigel spacer?

REPLY
psychometric | @psychometric | Mar 20 11:40am

Update #845...

PROSTOX™ ultra Test Result - Low Risk
Tested on 03/08/2025. This result indicates that you are at Low Risk of developing significant late genitourinary toxicity from SBRT.

PROSTOX™ CFRT Test Result - Low Risk
Tested on 03/08/2025. This result indicates that you are at Low Risk of developing significant late genitourinary toxicity from CFRT.

REPLY
gsd | @gsd | Mar 20 9:22pm

@psychometric, that's good news! It puts you in a lower risk category for late GU radiation toxicity. If I recall, your RO consults are at the end of the month at MDA. The Oxybutynin may kick in full force by then. Keep paddling; you're making progress!

REPLY
View MoreView Less
Please sign in or register to post a reply.