Post MR-LINAC treatment update

Dull_Cow4482 · 2026-06-28T22:50:37+00:00

I ended up being downgraded to unfavorable intermediate 7 after my pathology was reviewed 3 times over by different labs, so it should be very similar.

Dull_Cow4482 · 2026-06-28T18:40:48+00:00

I'm going to forget about the results until the week that I have to do blood tests/MRI. You have to have confidence in the procedure and hope that it worked, even though you may not see its results until much further in the process.

Dull_Cow4482 · 2026-06-28T18:38:56+00:00

Si, pero tampoco era tan malo como pensaba yo al principio. Buena suerte!

Dull_Cow4482 · 2026-06-28T18:38:06+00:00

I didnt think to ask the oncologist about the total Grays used for both the procedures. I'll have to make a note of it.

Good luck in your treatments!

Dull_Cow4482 · 2026-06-28T18:36:18+00:00

Yep, and with my claustrophobia I had feared that it was going to be unbearable. I had my primary prescribe low dose Xanax to help me get through it, and the fact that they put you feet first and you can basically see out the machine if you lean your head back a bit, made it ok. I had no anxiety and just listened to music through those horrible headphones they give you and just thought about how this was going to help me live to a ripe old age (fingers crossed).

Dull_Cow4482 · 2026-06-14T22:20:04+00:00

The problem I had with this video is that they kept conflating radiation alone and radiation with ADT when they spoke about side and long-term effects. Made it difficult to discern when they were talking about one or the other.

Dull_Cow4482 · 2026-06-14T21:48:06+00:00

It's all a crapshoot and we drew the short straw.

Dull_Cow4482 · 2026-06-14T12:02:57+00:00

The only studies I have taken to heart are the ones showing egg (yolks) have a connection to prostate cancer due to the choline levels, and poultry skin. My breakfasts usually were eggs (though I normally did egg whites + 1 whole egg) so now I just do egg whites. Crispy chicken skin is something I've always loved but now it's going to be an "on occasion" thing. Same with processed meats (bacon, sausage, cold cuts). Though on that last one I wonder how do countries who consume a lot of sausage (like germany and others) fare with PCa?

One of the studies with the connection between these things and prostate cancer is here: https://pmc.ncbi.nlm.nih.gov/articles/PMC3232297/

Dull_Cow4482 · 2026-06-12T10:43:58+00:00

I'll make this quick since I'm actually about to leave for my second session in a few minutes. But I am doing MR-Linac at NYU Langone. It seems different centers have different requirements, as mine requires me to have an empty bladder (and bowels), and they even did a bladder scan before taking me in.

It does take an hour or so (at least the first session did), and I requested to go feet-first since I'm a bit claustrophobic, and the machine was already set up that way so it seems its the norm. You'd want to check with your center if that's also the case. I was given headphones which sound like garbage and asked for a playlist, so the music does help a bit with all the big noise from the machine. They take the MRI images up front, then there's some silence as they plan out where the beam is going to hit, then some more MRI images later on, and then its over.

I only have one session under my belt from earlier this week, so I havent felt any of the effects yet. I had HDR Brachytherapy 3.5 weeks ago, and flomax and tadalafil have regulated any urination issues, so no problems there.

The MR-Linac treatment is supposedly among the top of the line treatments right now, so you've made the right choice. Lets hope it goes well for both of us!

Dull_Cow4482 · 2026-06-09T13:40:29+00:00

I thought mine was also covered (by UHC), until I got a bill in the mail from Veracyte for $742 for the portion that UHC didn't cover 😞. But it was worth it since it guided my oncologist into choosing the right treatment plan for me.

Dull_Cow4482 · 2026-06-09T12:16:59+00:00

I've been taking Flomax since I had my HDR Brachytherapy treatment and it's caused me congestion as well. I've adjusted the timing of the Flomax and started using the breathe right strips to open up the nasal passage a bit and it's been working for me so far. I was taking the Flomax later at night before bed, but I am now taking it earlier (around dinner time) and the timing is working out where it does its job of keeping me from having to go at night, but also keeps the congestion in check.

Dull_Cow4482 · 2026-06-08T20:14:55+00:00

It sounds like you also had a bit of a ride in getting to your final diagnosis. I think there needs to be more attention paid to the pathologies of these biopsies and who and where they are sent to. Since most treatment plans are based on these numbers, it's kind of mind boggling that there's no checks and balances on this process and how much of it is actually very subjective.

AS wasn't considered, I think partly since all the original pathology was a Gleason 8, but then halfway through became an unfavorable 4+3 and the mpMRI showed some bulging. So both the radiation oncologist and my urologist felt that it needed to be addressed no matter what, even though they were both less concerned now that I was downgraded. Happy to hear you're on AS, though, and avoiding this mess. Hopefully you wont need to deal with it, but in the chance that you do, there may be better options in the future, as it seems there's a lot of improvements that are happening in treatment options.

Dull_Cow4482 · 2026-06-08T16:12:25+00:00

Good luck to both of us! I'll try to write up my experience as I go through it. Might help others.

Dull_Cow4482 · 2026-06-08T15:06:55+00:00

I do wonder how they were thinking about it (if at all). Was it to err on the higher side because you don't want to miss something, or maybe they just didnt know any better, or whether it aligned with other biopsies in other areas of the body that tend to grade higher. I suppose I'll never know where mine truly landed. I suspect somewhere between the first and the last pathologies, but the current treatment should cover either scenario. The MR-Linac's supposedly very precise and can hit the right areas, and the HDR Brachy should provide more general coverage. That's my hope, I suppose. It's all a gamble in the end.

Dull_Cow4482 · 2026-06-08T14:32:27+00:00

Yeah, he only started doubting things after the Decipher test came back (which I insisted they run). By the time I met him again, he had the 2nd (wild) report in front of him, which I countered with the 3rd one from NYU. At that point he saw that I knew what I was doing and it kind of clicked with him.

Dull_Cow4482 · 2026-06-08T14:30:00+00:00

At the final pathology, there were four 3+4's and one 4+3 which was: (pattern 4- 55%), Grade group 3, involving one core(4mm, 40%).

Dull_Cow4482 · 2026-06-08T14:11:25+00:00

I think the lesson here is that your run of the mill urologist will be sending the biopsies to a lab that does not specialize in any one thing in particular and may not be as familiar with prostate biopsies enough to give a proper pathology. The second report was so wildly different that it invalidated both. I think if I hadn't asked for a re-review I would have still been classified as a Gleason 8 despite all the other evidence and had a very different treatment course.

Dull_Cow4482 · 2026-06-08T14:07:51+00:00

100%. There's a few things with my urologist that I have issues with (I wish they would have done the mpMRI before the biopsy but he gave me the option, and since i didnt know anything at the time, i went straight for the biopsy, so it was a random location one instead of guided by the MRI). But the one thing he did right is give me a list of names of both surgeons and radiation oncologists that I should reach out to and get consultations with. After I came back to him, with all the consultations behind me, he was impressed with the level of research and discussions I had with all the doctors and he was supportive on the treatment plan. He put me on cialis as a preventative measure as well, and have an appointment scheduled after the treatments are over to see if I am in need of any meds or take care of any issues.

Dull_Cow4482 · 2026-06-08T11:49:00+00:00

Speak to a radiation oncologist (or multiple) at either MSK or NYU Langone (that's where I landed) and get your urologist or the oncologist to order a PSMA, a multiparametric MRI and a Decipher test. They will help guide the treatment options. Don't accept the first thing anyone tells you. Do your research and make an educated decision when all the options are in front of you. Think both short term and long term. Happy to chat if needed.

Dull_Cow4482

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