Radiation Question : PSA test sent me... - Advanced Prostate...

Advanced Prostate Cancer

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Radiation Question

jgsdone profile image
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PSA test sent me into this journey about 8 mos ago, Gleason 6-7-8s, good PSMA PET/CT did not show uptake outside of the prostate, 6 mos now on Abiraterone and Zytiga brought PSA to .31, now suggesting radiation, went to see RO and they want to start right away, 8 weeks x-ray type to include abdomen in case cells in lymph, I am concerned about healthy tissue radiation and I saw Pencil Beam Proton claims less side effects, secondary tumors, better precision, etc. Any thoughts on which radiation option is best and timing ? Thank you.

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jgsdone profile image
jgsdone
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10 Replies
Scout4answers profile image
Scout4answers

Did you also get a shot of Lupron?

I talked to proton guy and he could not show me a study that showed an advantage over other forms of radiation. I also looked at SBRT (5 sessions) at UCLA but he recommended that I do 20 sessions IMRT instead because of location of my tumor.

Tall_Allen profile image
Tall_Allen

Consider hdr brachy boost therapy. It might be especially good for GS8.

wilcoxsaw profile image
wilcoxsaw

I would suggest that you have a consult with a good radiation oncologist specializing in x-ray type radiation, and a second consult with a experienced proton radiation oncologist, and a third consult with a specialist in brachytherapy , ask each some very pointed questions, and then make your decision based on what they say.

SeosamhM profile image
SeosamhM

This is a tough decision, J, and your questions should be better answered by your team if they are recommending immediate treatment. It's maybe a coincidence, but the most rushed times in my cancer treatments always seem to be with the RO team - always "let's do it NOW!"...

Radiation dosing is complicated and the RO team should be able to coherently explain what the expected dose is to any part of your body that you point to on your scans! While dosing over time theoretically allows healthy cells to recuperate (8 weeks is a long time, in my experience), as you say, the PSMA was clean. Do they really suspect lymph involvement? Are there other individual risk factors in your case?

Just my opinion, but it seems like Tall Allen's suggestion of high-dose-rate brachytherapy boost therapy seems to fit with your case and should be discussed. Good luck! - Joe M.

Derf4223 profile image
Derf4223

Getting radiation done is not a simple on/off switch. There will need to be prep scans, creation time for a body positioning device, and implantation of fiducial rods in the prostate. Also likely to have injected ADT medicine for 1-2 months prior. You should read up on things you can to prepare for RT SE's and afterwards. Also, you should get a bone density scan soonest. As for x-ray vs protons and other options, leave that up to your care team. They should use the tools they are highly experienced with and for which you can get insurance approval.

As for choosing a hospital and team, I found that my local regional hospital's onco staff are actually employed by Mass General Brigham and are very knowledgeable and not biased to doing things the way they want vs what is best for me.

Teacherdude72 profile image
Teacherdude72

Literally the only Gleason score that matters is the highest. That is the one they use for treatments.

jgsdone profile image
jgsdone in reply to Teacherdude72

I really appreciate all of the feedback on radiation, this step is concerning with possible side effects short and long term and the 8 week time frame and not missing a day. It seems excessive but RO says with GS 8 wants to be thorough, lymph nodes showed no uptake or any evidence of enlargement on a 3.0 T MRI w/wo contrast, RO says GS 8 more likely to spread to lymph nodes, he says imaging not always 100% conclusive, I pushed it about 4 weeks, probably CT planning scan in 3 so I have time to investigate Proton, already working toward consult appt and now looking into Brachytherapy, this was not mentioned by my RO. Large network at UCSD would hope they have that as an option. Thank you all again!

Teacherdude72 profile image
Teacherdude72 in reply to jgsdone

My G9 warranted Image Guided Radiation Therapy. 25 sessions followed a month later with two sessions of HDR Brachytherapy. All this in first quarter of 2016. Literally no issues with radiation even now in fall of 2023.Did have one lymph node radiated in 2020 during Covid. Listed as Ogliometastic. Nothing since.

Magnus1964 profile image
Magnus1964

It doesn't look like you need radiation at this time. If zytiga is working then stay with it.

j-o-h-n profile image
j-o-h-n

Greetings jgs but you're not done yet. Please give us your location and where you're being treated. All info voluntary.. (update your bio for you and for us). Thanks....

Now for a "very old post "of mine which is getting moldy..

Radiation - I've posted this before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.

p.s. On your way out, don't forget the tip jar.........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/31/2023 6:26 PM DST

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