Recommendation for second opinion on prostate MRI scan?

Jc76 would like to discuss more about your experience tomorrow if you're available.
Thanks

merwether, be glad to discuss anytime. Will be gone most of day today but you can always send me a reply or questions and will be glad to answer as much as I can.

Would not hurt to do a consultation with UFPTI. At that meeting would then give you the recommended treatment their team decided on. Again you can have your medical information sent to them (they will handle consent forms via e-mail).

At consultation you can decide to move forward or seek more opinions on treatments. In addition to consultation I did a visit orientation there where they give you a tour of facility. It is an extremely large facility with 5 different treatment gantry rooms and 5 different teams doing proton radiation treatments from 5:30 a.m. to 10:30 p.m.

I think if you type in proton radiation centers in Florida the institutes will come up. I know during my consultation they mentioned other centers. There were not many U.S. wide when UFPTI came on line back in 2006. I think the major one back then was a center in California. The books they sent you in your package goes into this. Have you asked for the package from UFPTI? They will send it out immediately and is very helpful.

You will find they are very truthful on differences of proton and photon as both are very good treatments for prostrate cancer. The proton major difference is the ability to control where the beam stops as it dose not pass through entire body like photon. You would still have some side affects like photon had as you are still radiating the prostrate. But for me the pencil beam that I was offered along with the radiation not going past my prostrate gland was something I wanted with the chance to reduce damage to surronding organs and tissues.

I also have a pacemaker/ICD which radiation can affect over many treatments. The pencil beam treatment I got kept the radiation as far away from ICD/Pacemaker as much as possible and I had no problems with ICD/Pacemaker during treatments which was check weekly to see if any damage or "resetting" of ICD/Pacemaker was happening.

Again I love Mayo Clinic. Have been going there since 2006 and their specialist and program are excellent. Just did not have the proton treatments at Jacksonville like they had at Phoenix and Rochester and my primary care doctor (Mayo) recommended I get second opinions and one he recommended was UFPTI. He has some patients with prostrate cancer who chose Mayo and some who chose UFPTI.

Many thanks for your response. Was curious if you had SpaceOar gel injected and if that was done under general or local anesthesia.

merwether, Yes had SpaceOar gel injected. It was done with local anesthesia.

When I would finish my proton radiation treatment they would be getting ready for next patient and I would see the balloon they use for those without SpaceOar. I am glad I got it and not have to go through that every time and also cuts down the time you are being treated. Most time (sometimes that have to make adjustments to beam and that is where markers are important) entire time on table less than 10 minutes.

I had the SpaceOar and Markers done at UFPTI. What they do is put some type of lanacane gel in the transperinial (that is area they use) area, and then lanacane injections. Then they have you inhale laughing gas. It is self administered to calm you down.

I did not feel anything other than pressure. I used the laughing gas at first but stopped as did not need it. The gold markers (put on prostrate to get specific line up of proton beam) put in at same time. A urologist does this and quite frankly went more easier and pain free than I thought.

I asked Connie (moderator) about secure messaging if you would like that. I could get your e-mail or phone number via that and we can converse that way if you like. I don't mind either way. I wish I had had someone who had gone to UFPTI and gone through this.

But if you have not gotten their (UFPTI) package (they will Fedex to you) please do as it is great information. Mayo Clinic Jacksonville has photon radiation treatments I think called SBRT which is a upgraded and more controlled radiation treatment and is very good as well.

I just chose to go with Proton to help lesson radiation damage as much as possible.

Do you think all proton facilities are equal? I could easily go to one in Atlanta or Nashville area, but UFPTI functioning since 2006. I have not decided surgery vs proton but leaning proton after research.

lyriew, In my opinion no not all the same. You need a one that has been doing the proton treatments a long time along with trained specialist with a lot of experience.

UFPTI has been doing them since 2006 and has treated over 10,000 patient. Their bio states almost every U.S. state and 33 countries have come there for treatments. They have a very robust help section for housing and assistance while there. If you are considering UFPTI ask for their package and will be Fed Ex to you.

The Mendenhalls (husband and wife) who are (William was my oncologist/radiologist) oncologist/radiologist specialists there. Mrs. Mendenhall and UFPTI received a 25 million federal grant to do long term proton therapy research. They have proton radiation specialist that treat specific cancers like eye, prostrate, head, neck, etc.

What I saw (and was hard to see) was a lot of children coming there as the proton radiation is used a lot for children to reduce short and long term radiation damage. Pencil beam proton capability is different than photon. All radiation treatments have short term and long term side affects but for children the long term side affects are much more important because of the life span on the patients being treated.

Those facilities you mentioned it would be helpful to know how long doing them. How many gantry treatment rooms they have. How many patients treated. Equipment updated. The gantry I got my radiation treatment on had just be updated with latest technology in 2023.

UFPTI is a massive facility with 5 treatment rooms doing treatments from 5:30 a.m. until 10:30 p.m. My gantry treatment room came on line (millions of dollar upgrade for latest technology) the first week of my treatments. I was give my priority preference time of around 12 noon. The entire next 5 weeks my treatment times were all within 30 minutes of that requested time. You are given your next treatment time when you finish your treatment. I liked that I had the same treatment team, techs, specialists, and treatment room for the entire 5 weeks. Got to know them very well and they knew me by sight and name. They also have an on line portal to send and receive messages, do questionnaires, forms, test results, etc. Their waiting room is a massive very comfortable area with piano and music, beverage area, and a separate enclosed area for children to play.

Mayo Clinic also has excellent prostrate care and programs. Phoenix and Rochester have and use proton radiation for prostrate cancer but Jacksonville only has photon. But Jacksonville has an excellent treatment and care[programs. Statistic wise the cure rates for proton and photon are basically the same based on 5 year studies. I mentioned the long term federal grant given to Mendenhall to study the long term results as most all studies so far have been 5 year studies.

I have been a patient at Mayo Clinic Jacksonville for 17 years and they are outstanding. A lot of people travel to Phoenix and Rochester as well.

lyriew, In my opinion no not all the same. You need a one that has been doing the proton treatments a long time along with trained specialist with a lot of experience.

UFPTI has been doing them since 2006 and has treated over 10,000 patient. Their bio states almost every U.S. state and 33 countries have come there for treatments. They have a very robust help section for housing and assistance while there. If you are considering UFPTI ask for their package and will be Fed Ex to you.

The Mendenhalls (husband and wife) who are (William was my oncologist/radiologist) oncologist/radiologist specialists there. Mrs. Mendenhall and UFPTI received a 25 million federal grant to do long term proton therapy research. They have proton radiation specialist that treat specific cancers like eye, prostrate, head, neck, etc.

What I saw (and was hard to see) was a lot of children coming there as the proton radiation is used a lot for children to reduce short and long term radiation damage. Pencil beam proton capability is different than photon. All radiation treatments have short term and long term side affects but for children the long term side affects are much more important because of the life span on the patients being treated.

Those facilities you mentioned it would be helpful to know how long doing them. How many gantry treatment rooms they have. How many patients treated. Equipment updated. The gantry I got my radiation treatment on had just be updated with latest technology in 2023.

UFPTI is a massive facility with 5 treatment rooms doing treatments from 5:30 a.m. until 10:30 p.m. My gantry treatment room came on line (millions of dollar upgrade for latest technology) the first week of my treatments. I was give my priority preference time of around 12 noon. The entire next 5 weeks my treatment times were all within 30 minutes of that requested time. You are given your next treatment time when you finish your treatment. I liked that I had the same treatment team, techs, specialists, and treatment room for the entire 5 weeks. Got to know them very well and they knew me by sight and name. They also have an on line portal to send and receive messages, do questionnaires, forms, test results, etc. Their waiting room is a massive very comfortable area with piano and music, beverage area, and a separate enclosed area for children to play.

Mayo Clinic also has excellent prostrate care and programs. Phoenix and Rochester have and use proton radiation for prostrate cancer but Jacksonville only has photon. But Jacksonville has an excellent treatment and care[programs. Statistic wise the cure rates for proton and photon are basically the same based on 5 year studies. I mentioned the long term federal grant given to Mendenhall to study the long term results as most all studies so far have been 5 year studies.

I have been a patient at Mayo Clinic Jacksonville for 17 years and they are outstanding. A lot of people travel to Phoenix and Rochester as well.

I have been a patient of Mayo Clinic since 2006. It was my primary care doctor there that referred me to Mayo urologist after my PSA kept going up but was sill under normal number. Urologist at Mayo did DME, and ordered a MRI. The MRI showed areas of concerned. Next step was this urologist did a MRI/Fusion biopsies. Those biopsies came back positive for cancer. Urologist then referred me to Radiology/Oncology for consultation.

Did the consultation at Mayo Clinic and at UFPTI. From my research, primary care doctor, the consultations, the package I got from UNFPTI, I decided on proton radiation versus photon which is what Mayo Jacksonville does.

When I had the biopsies done is when I contacted UFPTI but already has gotten their package as my primary care doctor was saying to consider UFPTI and proton as he had done a lot of medical research there and some of his patients with prostrate cancer went to UFPTI and others to Mayo.

So it was Mayo first and then UFPTI. Mayo sent all my medical records to UFPTI which prevented me from having to go through additional testing by UFPTI as the tests were already done.

I hope this answered your questions. IF you want you can send me a secure message (upper right hand of web page) and we can converse that way and or I can send you my e-mail. If really has to be a personal decision based on what you learn by research, consultations, and feedback you get. What is good or best for me or others may not be best for you.