Proton Therapy: any long term side effects? Any regrets?

Thanks again for your reply. I have just written this morning for the URHPTI from UF/Jax. I live in St Pete and I'm putting together as much info as possible re proton treatment at Orlando and Jax. Jax seems to be winning out! I have a prostate biopsy Monday, August 5 and I meet with the urologist two weeks later. At that time I imagine he'll talk various treatments. I hope I will quality in his eyes for proton therapy. I'm 77. At my last meeting he said he did not think to remove the prostate and that the cancer was 'enclosed' so that he thought it curable. Please God he's right but the biopsy may alter his views.

@kmat
You will hear almost all who have gone through this to get second opinions. Your medical instution or doctor can send you medical records to UFHPTI in Jacksonville. UFHPTI can handle that for you. I only mentioned UFHPTI as they have that set up for their second opinions.

The UFHPTI experts there will go over your tests, and diagnoses and concur or not concur. And will set up any additional testing they need. I had several additional test at UFHPTI that the other institution did not do. My R/O went over what their Phsysic Department recommended for me of the types of proton radiation that can be used based on what was best for my specific cancer and medical information.
Are you saying that your biopsy will not be known to you or you will not meet with your urolgist for two weeks after your biopsy? UFHPTI and Mayo use patient portals. The test you get go directly to them and they contact you via portal.

I and many others who went to UFHPTI used the portal extensively. I received a message back to me that same day or next if I had a question or needed information.

I don't know about the treatment centers in Orlando. They maybe great. I can say that UFHPTI is outstanding and been a leading edge of proton treatments since 2006. They just received a 25 million dollar federal grant to study the short and long term treatments and outcomes of proton radiation versus photon and other methods.

I wish Mayo Jacksonville had proton radiation but they only have photon. They are building a new cancer center that will have proton but not for several years. Photon radiation is a choice of many and many new methods used but I chose proton based on my PCP and my research. That is why getting second opinions, reserach, and using information media like MCC can help you.

When I got my packet from UFHPTI it was full of research from so many different institutions and medical research experts. What I did was asked questions and asked about both pros and cons during visits.
Good luck!!

Dear jc...I'm grateful for your reply, info and encouragement. I have an appt with my urologist about two weeks after the biopsy. I presume then he'll talk about treatment. I wrote away to UFHPTI as per their welcome page and look forward to receiving their info package. I'm learning that I have to take initiative in questions of all kinds and in internet research. But I confess this forum is best. I just returned from Brandon where TGH maintains its cancer center, a new, enormous bldg. I went up to the endoscopy floor (2) to have a quick look. A dry run. As well since I got a bit lost! with very deep gratitude....

I was diagnosed a year ago. It started with a rise in PSA from the 2s to the 3s and up from there to the 7s just prior to my proton therapy treatment at UFHPTI in Jacksonville. My first test was a 3T MRI locally in Ft. Myers (I live across the river in Cape Coral). That showed high likelihood of cancer so I contacted Moffitt Cancer Center in Tampa. They ran some more tests - biopsy, PSMA-PET scan, and a Decipher Test on the biopsy tissue. So Gleason 7 (4+3 and 3+4) and decipher was low risk so I was off to find a treatment to live with. I had 10 doctor interviews - Mayo Clinic, Houston Laser Center, two locations here in Florida for TULSA, three doctors at Moffitt (surgery, photon SBRT, & brachytherapy), a Proton doctor in Jacksonville and two local photon therapy treatment doctors 5 minutes from my house. I decided on Proton therapy at UFHPTI in Jacksonville and finished on April 19 of this year. PSA is at 1.89 and dropping. Everything works as it did before therapy. I can't recommend UFHPTI highly enough. Moffitt didn't offer Proton Therapy, but will have it in 2026. Moffitt is excellent and very nice people there too. Good luck.

Hello. I'm still preparing for a biopsy at TGH cancer center, Brandon, FL, in two weeks' time. Some prostate cancers respond well to proton, some not. Can anyone let me know some basics that go into that decision? Thanks.

My proton radiation began March of 2010 at Loma Linda Children's Hospital in Loma Linda, California adjacent to Riverside. Loma Linda Children's Hospital was one of the first to build a cyclotron which requires a very large space to "spin" and throw off the protons. The large space mentioned is the sIze of a football field but round in size. The hospital built this back in the early 1990's at a cost of several hundred million dollars. Without review, this is what I recall from reading the information 14 years ago.

The hospital put me through either a MRI scanner or something similar. This identified the location of the cancer. The biopsy was "slow growth cancer on te right lobe". PSA: 6.47; Gleason 3 plus 3. Then the "machine" uses the MRI or scan to "mark" the areas of the cancer. I was placed in a lower body cast to minimize movement and while on the "bed", the nurse placed a ballon up my rectum to keep the prostate in place while the "machine" calibrated where the precise cancer was located. This was each morning for 9 weeks. Each treatment cost at that time nearly $4,000. My full time under the "machine" was about 5 minutes. I understand the procedure has changed reference target cancer area.

But, be aware, proton radiation therapy as a definition can be used to identify several treatments, but the cost and construction of a proton radiation operation like the one I experienced are few in the US because of the cost. So, make certain you are getting what has been professionally proscribed.

Now..the after-effects. Virtually none! I was somewhat tired by Friday..but most days I played racquetball where I stayed during the treatment at Air Force Base, California..about 30 minutes from Loma Linda. Leesburg, Florida

I went to their website. This institution (as you may know) does not offer proton radiation therapy.

if it is a biopsy, the OK. It is a relatively simple procedure. But, most professionals recommend an MRI to absolutely identify the cancer locations in the prostate. This ensures the needles take the right samples of tissue.

They will give you a shot to minimize the "pen pricking". I had two biopsies..one without "pricking" and the other with "pricking".

Lastly, they are in the business of treating prostate cancer. As such many will recommend surgery..you may wish to research the possible downsize of surgery..and there are many. Once you get the full report, see what they say as to the level of cancer. Then, if you have the resources..go to the best..Mayo Clinic in Jacksonville to validated what was diagnosed and recommended it is your life..take good care of it.

Dear jrhemp,

Grateful for this information. I took a second breath at 4k/treatment. I take it that's daily treatment so that the final bill was over 50K? My sense is that treatment is cheaper now as I hope. Did you have insurance? A second question, Orlando health also has proton treatment. It's closer to me in St Pete by half. Do you know if Orlando and Jax are about the same in terms of quality of treatment? I'm 77 and had the MRI t-3. I'm certainly drawn to the proton treatment. I know a treatment center establishes eligibility. Do you know what the grounds are of eligibility? Just very grateful here for your time and knowledge and encouragement.

Questions:
What is your age?
Do you received hormonal treatment prior radiation.?
Are cancer free after 14 years
Post PR?
What is your current PSA?
No urinary symptoms in general?
About ED?

I live in St Pete. If I am eligible for proton I lean toward Orlando as it is closer. I understand that it is as effective a proton as UF Jax although UF Jax is larger and more experienced. Am I correct in this? Thanks