Information about a RO for treatment following BCR at a proton beam therapy facility

[ragnar2020]

Greetings fellow travelers. I'm seeking recommendations about an experienced RO at a proton beam facility for treatment following BCR. Any information that you might be able to offer would be appreciated.

[Tall_Allen]

Rossi at Scripps if you are in Southern California. But for SRT, MRI-targeted SRT may have lower toxicity - you may want to talk to Amar Kishan at UCLA.

[ragnar2020 in reply to Tall_Allen]

Hello Tall Allen,

I have been in contact with Dr. Rossi at CA PBT, and he may be whom I choose for the PBT. However, I'm investigating some alternatives on the east coast where I could drive to the facility. If it was not for the issue of Covid infections on airplanes, I'd just fly to San Diego, but now that the mask mandate has been lifted on airlines, I'm not inclined to fly anyplace. Do you know any ROs at the Roberts Proton Therapy Center U of PA in Philadelphia, PA. The UF facility in Jacksonville, FL is a possible option too. I'm investigating options.

Thanks,

[Tall_Allen in reply to ragnar2020]

You should be aware that using protons for SRT should be considered experimental and should not be done outside of a clinical trial.

[ragnar2020 in reply to Tall_Allen]

Hi TA,

I am aware that some folks believe that. I do not. Thanks for your concern.

[chaplainj in reply to ragnar2020]

I’ve been treated by Dr. Roi Dagan RO at the Fl proton center for several years. He’s outstanding and I’m pleased with my treatment from him. J. W. Johnson

[ragnar2020 in reply to chaplainj]

Thanks for your comment. I’ve been in contact with Dr. Randal Henderson at the UF PBT Institute in Jacksonville. He was extremely helpful. UF’s PB facility is one of the oldest facilities in the country with a long history of dedicated service to patients requesting PBT for various RT including PCa. I’m considering using them when my BCR is deemed to have occurred and I need RT.

[Schwah]

Be very careful with these proton guys. I went there when considering various treatments. I found them aggressive, fear mongering and extremely high pressure. Keep inMind that these places have spent 100s of millions of dollars on the facilities and often feel compelled to use scare tactics to pressure people. After listening to their entire spiel my wife asked the doctor a simple question. “If it were your husband or father, what treatment would you use”. To our amazement he said “to be honest, I’d use the seeds”. Guess he felt compelled by her question to answer honestly despite the company line.

Out of curiosity, other than what these people told you, what has lead you to the conclusion that the proton treatment you are considering is not experimental?

Schwah

[ragnar2020 in reply to Schwah]

If I had chosen RT as my primary treatment for my PCA rather than robotic surgery, I probably would have chosen seeds. But I had a RARP at MGB. So, now I’m dealing with the inevitable BCR. I’ve spent a couple of years reading medical journal articles and talking with men who have used PBT for their SRT following BCR. I have concluded that PBT is not anymore experimental than other forms of RT and is probably less toxic to one’s surrounding organ tissue. ROs who promote their chosen specialty are all aggressively marketing their skills for money. They each point to the cost of one form of RT versus another as to why a prospective patient should question the motivations of another RO using a different form of RT. I’ve concluded that PBT is less toxic than other forms of RT to surrounding organ tissue.

Dr. Carl Rossi has probably done the most RT using PBT for SRT following BCR in the country. He worked for years at Loma Linda before moving to Scripps which is now ÇA Proton Therapy Center. But, if one cannot get to San Diego because of the Covid viral surges lurking in airplanes, the next option is trying to find a RO who has the most experience using PBT for SRT functioning on the east coast where I can drive to the PBT facility and live in that area for a couple of months with the least exposure risk to Covid.

I’m still not ready to pull the trigger yet for SRT, but that time is approaching, so I’m searching. I’ve used telemedicine meetings with some RO using PBT for BCR, and these docs are professional caregivers plying their chosen skills. Sure, they want paying customers. All docs want to get paid. I believe that PBT is proven technology that will eventually become SOC as will targeted delivered radioactive infused isotopes, We just need to survive long enough to be around when our capitalistic American medical system lets us use the technology for a reasonable cost.

Thanks for taking the time to relate your experience at the U of PA facility. I’m learning that their facility is busy, very modern, and their staff is knowledgeable. But now I need to find their most experienced RO doing SRT for guys with BCR.

[Schwah in reply to ragnar2020]

My experience was actually at Loma Linda. And I agree that most Doctors promote their own form of treatment. That’s why I chose an independent oncologist I trust (with no skin in the game for any particular treatments) to guide me. If you’ve done your own research and you are comfortable with your choice, I respect that and wish you the best.

Schwah

[Scout4answers in reply to ragnar2020]

To add to what Schwah said above. I had a similar experience at a PBT facility 7 years ago, only to find out that the RO had a large financial interest in the facility.To be fair I went to same facility a few months ago, different RO and had no pressure what so ever. Facility is now owned by a large Research Hospital affiliated with Northwestern Univ.

Look into the ViewRay by Meridian for low side effect profile (MRI guided). Kishan at UCLA may be the most experienced practitioner that you will find. With view ray they can use 3mm margins vs. 10 mm margins at PBT and most IMRT.