Options for radiation with enlarged prostate: Concerned about waiting

Posted by dribbles @dribbles, Mar 29 11:35am

I'm 72, diagnosed in Dec 25 with Gleason 8, Decipher.29 enlarged 77ml prostate, PSA was 6.2. Single small tumor no involvment/ contained per PSMA. I was having some urinary issues and was concerned enough about the outcomes after either Surgery or Radiation. I started on Orgovyx to buy some time to fix the enlarged prostate and decided on a PAE procedure that I just had on 3/27 at Mayo Rochester. The procedure went well and is painless. It took about 4 hours on the table. The procedure is starting to get popular but I haven't seen it mentioned on this site yet.

Hopefully, the shrinkage I get from the Orgovyx and the PAE will help with urination and also offer a much smaller radiation target for my 5 SBRT treatments. They estimate the shrinkage could be 30-45%. My doctor says the reduced blood flow to the prostate will also impact/hinder the tumor growth some.
I have to wait for the prostate to settle down and radiation won't happen for 6-12 weeks. That was a concern, waiting that long with a G8 tumor. The Drs. were ok with it because the Orgovyx keeping it in check. I'll keep updating my outcomes as I move through this.

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

I had PAE, it definitely helps shrink but it takes 6 months to fully do the job, but that is without added Orgovyx at same time. PAE is a piece of cake, for me it was as easy as it goes.

If you are near Mayo, they have just about every machine. Not sure I would opt for SBRT. They have proton, Brachy probably, maybe the Linac but probably just the Varian Truebeam or Varian Ethos, and not the MR Linac I think. But they have everything at Mayo so I would not go for SBRT if it were me. They also have other stuff too other than radiation. But of course a lot is skill on these machines, Mayo should have skilled people but who knows on any one machine. Good luck whatever you go with.

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Even though you are a Gleason eight the Orgovyx Should really keep things under control. Prostate cancer grows very slowly, and the drug will stop it from growing and spreading.

If you have the prostate removed your urinary flow problem will probably be fixed. If you have radiation and have problems they still can do a TURP to clear out tissue that’s in the way. Gives you a couple of options at least.

Ask the doctor if they can spare the nerves if they do a prostatectomy. If they can do that, then you will usually Still have the ability to get an erection. Then you’re only issue is incontinence, which is almost always resolvable, but may take some time after surgery.

With radiation, a percentage of people lose the ability to get an erection after a few years since the nerves get burned, but the urinary issues are usually minor cases of proctitis fixed with Flomax.

The large prostate is not really a problem when it comes to radiation, And your isn’t that huge especially after the PAE.

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Profile picture for bjroc @bjroc

I had PAE, it definitely helps shrink but it takes 6 months to fully do the job, but that is without added Orgovyx at same time. PAE is a piece of cake, for me it was as easy as it goes.

If you are near Mayo, they have just about every machine. Not sure I would opt for SBRT. They have proton, Brachy probably, maybe the Linac but probably just the Varian Truebeam or Varian Ethos, and not the MR Linac I think. But they have everything at Mayo so I would not go for SBRT if it were me. They also have other stuff too other than radiation. But of course a lot is skill on these machines, Mayo should have skilled people but who knows on any one machine. Good luck whatever you go with.

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@bjroc thanks
The plan now is proton Sbrt. I may be off on this but SBRT can use proton or photon

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Profile picture for dribbles @dribbles

@bjroc thanks
The plan now is proton Sbrt. I may be off on this but SBRT can use proton or photon

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@dribbles

Yeah that sounds like worth the trip, maybe they have the Varian Probeam or something. Those are proton sbrt 5 sessions I think. Neat!

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I am looking into the SBRT proton, this is one of the machines sold out there, a youtube guide about the basics of having I guess.
Varian Probeam:


I have a zoom type appointment in 30 days at mayo Rad Onc, if I might ask who is your rad oncologist at mayo willing to do all the paperwork for this?

It is a real neat system, I am sure it still is no fun, but if we have to do something it might as well be not old tech, but something newer.

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Profile picture for bjroc @bjroc

I am looking into the SBRT proton, this is one of the machines sold out there, a youtube guide about the basics of having I guess.
Varian Probeam:


I have a zoom type appointment in 30 days at mayo Rad Onc, if I might ask who is your rad oncologist at mayo willing to do all the paperwork for this?

It is a real neat system, I am sure it still is no fun, but if we have to do something it might as well be not old tech, but something newer.

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@bjroc
Dr. Waddel is the Radiation Oncologist, not sure what you're asking in regards to paperwork. My plan isn't in place yet, I have to wait for PAE healing and then plans will be made after we see what size prostate I end up with.

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@dribbles
Oh usually with proton there is paperwork they do submitting for approvals and so on, not just regular approvals too. In 2023 I was trying to do proton at Mayo, after two months of paperwork, sort of half telling me they were working on it, they basically finally told me.... well there weren't any slots available on the proton machines. I did Tulsa Pro that failed recently, so I am back to looking around now.

So that means for you as you wait, they are prepping and doing paperwork and getting you a slot on the machine as these slots are not that easy to get at Mayo, and if it doesn't turn out it is no loss for them they send you to something else. Mayo does a lot of studies, known to you or not, they have you prep for slots on machines and so on plus payment approvals, they can always switch you out but getting you in, especially with proton, can be a wait and difficult unless you fit some study exactly. So you are doing the right thing by PAE first, watch and see what happens, behind the scenes they do paper stuff. They have a good plan for you I think.

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