initial consultation questions

[Garfield-_1234]

I have my initial consultation for the Proton Center tomorrow and am looking for what the community thinks are relevant questions to ask. Dr. specific? Facility? and/or ?

thank you

[Tall_Allen]

What clinical data suggests that protons have less side effects than photons?

[Garfield-_1234 in reply to Tall_Allen]

Good one. Thank you.

[Fortysstyle in reply to Tall_Allen]

Tomorrow I am also meeting a respected RO because my PSA is rising after RP 3 years ago. Respectfully, do you feel that this AI generated answer to your question is not correct?:

“Compared to photon radiation, proton radiation generally causes fewer side effects because protons deposit most of their energy directly within the targeted tumor, minimizing damage to surrounding healthy tissues, while photons travel through the body and can damage healthy tissues along their path; this means proton therapy can lead to less skin irritation, fatigue, and organ damage in comparison to photon therapy.”

[Garfield-_1234 in reply to Fortysstyle]

Yes, that is my, non-AI, researched answer also.

[Tall_Allen in reply to Fortysstyle]

Yes, it is not correct (as most AI-generated answers to medical questions are not correct). Proton advocates claim that because of the Bragg Peak, protons do less damage to healthy tissues than photons. In actual clinical use, there seems to be as much damage to healthy tissues as with photons. The reasons are that protons are scattered from the nozzle head, there are very toxic secondary neutrons generated forward of the beam, and it often requires the use of spread-out Bragg peaks to treat large-sized volumes like the prostate. Comparing clinical trials in non-randomized patients, there is no toxicity advantage.

prostatecancer.news/2016/08...

prostatecancer.news/2016/08...

Proton advocates have resisted doing a randomized clinical trial that would prove superiority. This is understandable because they paid tens of millions of dollars for their facilities and recoup their investment by hoodwinking patients into paying their exorbitant fees.

[Fortysstyle in reply to Tall_Allen]

Thanks, TA. Just one follow-up. Would the same toxic secondary neutrons and spread-out Bragg peaks still be an issue if treating a small area of low volume mets, say in the prostate bed? I have ulcerative colitis in remission/no symptoms or treatment in 4 years. I had a positive margin after RP (3 years ago) and proton may be my best choice if it hasn't moved from the bed. Although, RO may not approve the use of it anyway due to not being able to use a gel barrier.

[Tall_Allen in reply to Fortysstyle]

Secondary neutrons are always formed, nozzle diffraction will still occur, and spread out Bragg peak is a consequence of the entire prostate bed that must be treated.

[BeHealthi in reply to Tall_Allen]

for salvage treatments, which is the best treatment in your opinion Tall_Allen? I don’t know much about Protons , Photons or Hifu.

[Tall_Allen in reply to BeHealthi]

Salvage after prostatectomy or primary radiation?

[BeHealthi in reply to Tall_Allen]

After Prostatectomy

[Tall_Allen in reply to BeHealthi]

X-rays is the standard. This trial was not among salvage patients, but why would it be different? HIFU is not used for this.

[Schwah]

my experience at Loma Linda proton facilty was very negative. They pushed me so hard to use them that it made me very uncomfortable. Interestingly at the end, we met with their dr. My wife told him we’d been to numerous doctors. She asked, “so if it was your dad or brother, what treatment would you do.” Much to our surprise he replied, “if it was me, I would do the seeds” (meaning Brachytherapy). That was shocking coming from a proton therapy venue.

Schwah

[babychi in reply to Schwah]

I usually ask exact same question pre treatment.

[Tall_Allen in reply to Schwah]

I tell patients never to ask that, but it is always asked. The doctor's lived experience is different from the lived experience of the patient. Why would any patient do whatever the doctor would do?