Starting Proton Treatments for Prostate Cancer: Any experiences?

@jc76 thanks for the reply. I’m working with the Proton Center in NYC and requested information about cost and payment options for non-covered patients after reading your post. Waiting to hear back. Tentatively scheduled for photon mapping session later this month with treatment to begin in December. My oncologist did not want to wait to roll the dice on resubmitting the claim under my wife’s insurance in January given the expected time for prior approval/potential appeals with ultimately no guarantee of coverage.

@karrows I am 71 and on Medicare but have an Advantage Plan with Anthem and they make the decision on coverage. I have been denied all 4 approaches. Anthem is discontinuing their advantage program at the end of this year, which they should; it has been a real disappointment. I am going with Aetna and they have a great history over all and in approving proton therapy. I will still need pre-approval but very optimistic we will start 28 treatments in early January. I hope everything is going in the right direction for you.

@karrows, how are you doing? How is the decision making going? Have you decided the course of treatment you will be getting with your team at Mayo?

I did go with proton SBRT at Rochester Mayo in late Jan. No insurance problems. Pet scan was as clean as could be, everything was fully contained. Just returned to work today.

I was surprised that before even asking, the Dr was up front stating that the studies and data do not show that proton is any better than normal radiation, but they still believe in it's benefit in theory that less radiation to nearby areas should be better than traditional radiation. They recommended SBRT Proton, but left it open to my choice on the type and length or treatment, stating short course or long course, proton or photon, all show equal outcomes in studies.

Treatment was worse than I expected. 90 minutes after my first treatment, I had some pain and nausea. Lots of fatigue through treatment, lots of urinary tract pain that meds eventually took care of. Dr said that my side effects were worse than normal, but within the range of nothing to be concerned about. He said everyone reacts different to radiation, and they don't know why.

Even with the worse than normal side effects, it wasn't too bad. Took two weeks off after treatment to recover, and glad I did. Now the long wait for my psa test in 6-months.

I had my prostate removed then a reoccurrenc. I was told it was bladder cancer and scheduled for radiation because as I was told, Proton is not for the bladder. Sent my info to a Proton place . It was a reoccurrence . Had Proton 6 years ago . No side effects . The techs that cared for me were the Best and they were a major force in my still being here. I was a Gleason 9 at the time of surgery. I had 41 Proton treatments and drove to every appointment . The drive was 165 miles each way every day 16,500miles in 41 days. GET IT DONE ! Change your diet ! There are foods that fight cancer. Ask your Proton nurse for help and suggestion. Get it done ,.

@dderiso Advantage plans are terrible. I have Medicare only and I went to 3 oncologists and signed up for each one in case I couldn't have surgery
When surgeon approved I dumped the other 2.

@kevlopota similar experience here minus the bladder issue. 40 proton treatments but only had to drive 60 miles. Well worth it, and felt safer with proton.

My friend had his removed but had standard radiation after and he was sick after each treatment and is still on medication. I've met many treated for prostate cancer and were never told of Proton. I brought up surgery and Proton and was told the results are no better. Proton and surgery have higher success rates and the side effects are minimal and quality of life afterwards is so much better . I knew this from reading a patient written book given out by the Proton place I used. He stood in front of me told me what I was going to do,no ifs ands or buts and lied about my Gleason score also. I'll never refer to him as a dr. I would have been dead years ago and before I would have had a terrible existence. My 3rd grand girl was born 1 month before I was diagnosed. Because of Proton I ride bikes with her everyday !

Has anyone out there had a problem with the interaction of Orgovyx and lisinopril? Since starting the ADT (with Orgovyx), I have experienced wide swings in my blood pressure, from a low of 87/59 to a high of 197/136, plus a large number of experiences with lightheadedness and instability when standing. My Primary Care Physician has taken me off the lisinopril, pending arrangements for me to wear a heart monitor for a period. I have a “normal“ EKG.

My husband and brother both had proton therapy versus prostate removal. Both say they are very happy with that decision. Before his decision, my husband did extensive research and talked to 10 different men who had surgery. Only 1 of the 10 said they were happy with having it removed. Most said the incontinence and/or having to wear a pad/diaper were awful. That made the decision to do proton therapy much easier for him.