I have a family history of cancer - all of my immediate family has had cancer diagnosis including breast, testicular and prostate. My father and older brother were diagnosed around 50 years old. Dad elected for radical prostatectomy and lived to be 80 years old and died of dementia. My older brother three years ago elected robotic radical prostatectomy. Dad suffered with serious incontinence for thirty years and impotence. Older brother suffers from stress incontinence and some impotence problems.

With such a rich family history of cancer, I started my regular prostate exams at age 35. All rectal exams were normal. PSA in 2012 was 1.05 and has steadily climbed with age, but nothing unusual. 3.07 in January of this year was interesting but not worrisome.

But during that January exam, blood was discovered in my urine and my urologist decided the proper course of action was a bladder scope, and a CT scan. Scope was fine, but the CT scan discovered a suspicious lesion on my sacral spine. An MRI was scheduled, a bone biopsy of the spine was scheduled, and my urologist cautiously advised a prostate biopsy in the event the spine lesion was something spreading from the prostate. Needless to say, my deductible and out of pocket costs on my health insurance is fully paid this year. The bone biopsy came back benign, but the prostate biopsy came back with 4 out of 12 positive hits, each Gleason 3+3. The family genetic curse had struck its fifth and final mark.

At 47 years old, four kids (literally adopted a 3 month old baby last month) and a loving wife, I wanted to get the prostate out immediately. Surgery was the first thing that came to my mind, and I was going to suck it up and be miserable for the rest of my life. My wife had other ideas. She mentioned "proton therapy" as an option - having recalled a professor of hers that had the procedure. Okay. I would hear her out. And I did some research. This website was one of the FIRST hits on my search, and it was a light at the end of a dark tunnel.

I knew at my July 9 visit with the urologist that the biopsy was positive when, before handing me a cup to urinate in, the nurse asked, "Did you bring your wife with you today?" The urologist had done ureter surgery on me 9 years ago, and then he had recommended open surgery without hesitation. I took him up on his offer. But prostate surgery is another bit of business altogether. None of the doctors I've spoken to have advised that their specialty is best. My urologist said he would do the open surgery, but scheduled me with a consult with the robo-surgeon in the practice. The rob-surgeon told me he would gladly schedule me for surgery, but he scheduled me for a consult with the West Clinic oncologist who told me he would gladly treat me with IMRT if I like. When I asked him about proton therapy, he agreed it was a great idea - I should definitely look into that. I now know it's my decision.

I have sent off an application and medical records and tests to three proton clinics. Loma Linda in CA, ProVision in Nashville, and UF Health in Jacksonville, Florida. I have an appointment with Nashville Tuesday of next week, but they have only been open for 9 months, and they are losing millions of dollars so I'm going more for an information collection than as a serious contender. Loma Linda has been doing proton therapy for years, but UF Health has more recent technology. I'm focusing my research now on the different machines and technologies in use, the number of sessions, the amount of radiation, imaging equipment, rectal protection devices and such. Research is quite a hassle because most of information on the proton center websites are too basic to be of any use.

I'd like to be starting treatment in the next 3 to 4 weeks. The plant is to pick up and take the family. I have United Health Care for insurance and I am trying to decipher the policy and the process of authorization. My company also offers a cancer resource program that may pay for some lodging and transportation. I also have a company provided health advocate and registered nurse to assist. If I request, I also have the ability to secure additional support and counseling. All in all, I feel I am prepared to meet this challenge head on. Some of the best information is found here on this site, and through PC survivors like you who give their phone numbers and email addresses and invite communication on this journey. I'll keep you posted.

I have just returned from Loma Linda near LA to speak to their doctors regarding their proton therapy program. This is after a July trip to Nashville to speak to them about their brand new clinic that started treating patients just 8 months ago. Nashville has the pencil beam scanning (PBS) technology but is new to the game. Loma Linda has been doing proton therapy for 30 years, but their technology is dated.

I told myself that if Loma Linda's doctor consult did not impress me to the point I felt compelled to proceed with treatment there, I would likely choose University of Florida in Orlando. They have been treating patients since 2016 with their 500th patient just treated this month. They have the Mevion S250 equipment which I don't beleive is PBS technology. We will be taking the entire family with us for treatment, so Orland is a popular choice for the kids - as you can imagine.

Loma Linda's doctor did not impress me. For an hour he asked me rhetorical questions rather than explaning their therapy protocol with clarity. I found myself confused as I made several incorrect guesses before he would tell me the answers to his questions. It was a frustrating day after traveling from Tennessee to LA for some answerse. I decided as soon as I left his office that this doctor was not for me, and I therefore judged LL on him alone.

I am struggling with juggling work, family and coordinating treatment, and it is stressful. The choice of a proton clinic is not as easy as I would like it to be. The PBS technology logically seems to be a slight benefit, but I don't know whether it is so significant as to warrant driving my decision of where to pursue treatment. I am ready to proceed - just as soon as I decide WHERE!

I continue to be buoyed by the encouraging stories of fellow survivors, and the success stories of those survivors who have gone through the proton therapies for prostate cancer without the PBS options.

Loma Linda's doctor did suggest that if proton therapy did not effectively GET IT ALL, he had other options, and in fact the NO SURGERY AFTER PROTON THERAPY rule is not a hard and fast rule. He was encouraging but truthful, and also gave me the straight talk about what could go wrong, and what to expect if they did.

Proton therapy remains my top choice. I hope to have a decision by the end of the week, or at least next week where I plan to proceed. Orlando is in my sights at this time, but I am running out of money to travel for live consultations which is what all of the clinics require.

The number of therapies is also different. Nashville indicates 28 therapies while Loma Linda indicates 39. Fortunately, United Health Care has already approved the Nashville therapy, despite my current beleif that I am not going to proceed with Nashville. However, the Nashville doctor has so far been the most informative and the most reliable.

I remain frustrated with the lack of information available from the proton clinics regarding their specific equipment. Many nights I am scouring the world wide web with Google searches.

Best wishes to all on this journey!

I am currently sitting in a hotel room in Orlando, having traveled down from Memphis for a consult with Dr. Nanda at University of Florida Health at Orlando. I have decided to proceed with proton therapy here, and tomorrow (9/20/2019) the doctor will place three gold fidicual markers in the prostate. I was given a prescription for antibiotic and instructions to take a Fleet enema tomorrow morning. The procedure will take less than 30 seconds they promise, with the fun of a rectal ultrasound wand. I was asleep for the prostate biopsy, so I missed that rectal intrusion. It appears I won't escape the fun this time.

An October 1 "simulation" visit is scheduled for MRI, CT and measurements of the prostate to allow them to prepare my therapy protocol which will begin "ten to twelve days later." We spent this week looking at AirBNB properties to rent for the duration of the treatment. I will be flying down with the three kids while the wife drives down with all our belongings. I'll be taking off work for the duration of treatment and will be spending that time with the kids enjoying evertyhing Orlando has to offer. We are hoping to start therapy the week of October 14.

Orlando uses the balloon in the rectum, but the doctor says if I want to get the SpaceOar gel spacer (which they do not use) he has no objection to that. He believes the balloon is sufficient (they radiate with a 6mm margin which I beleive is 1mm larger than Loma Linda) to protect the rectum, but again, he fully supports my decision if I want to get the SpaceOar. I don't know if they will use the balloon in addition to the SpaceOar if I get the SpaceOar. I scheduled a visit with a doctor in Memphis who does the SpaceOar after simply looking on SpaceOar and searching for providers in my area. It's a tight window, but hopefully he can get the SpaceOar inserted prior to tmy October 1 return.

Orlando does 39 therapies. We will be in Orlando for Thanksgiving and two of my boys' birthdays. The machine is down on Thanksgiving Thursday and Friday, but they will open that week on Sunday to help catch up with therapies.

United Health Care has approved the treatment at Orlando. They had previously approved treatment at Nashville (fewer therapies and the Space Oar) so hopefully they won't balk at the decision to get the SpaceOar inserted in Memphis.

My company provides a Cancer Support Program that indicated it would pay lodging ($100 per day) and travel ($0.18 per mile) for treatment, but the fine print revealed that they will reimburse these costs ONLY if I seek treatment from facilities they have deemed to be CENTERS OF EXCELLENCE. That does NOT include Orlando, so, "sorry Mr. B, you won't be reimbursed for your costs." I'm not giving up that easily. Ironic, one of the Centers of Excellence is in Houston, Texas, which is currently under three feet of water this week. As an attorney, I am confident I will have some success arguing for extending me the expense reimbursement regardless of my choice of facility.

The doctor at the consult noted that they do both photon and proton treatment at Orlando, and noted that there has not yet been a successful study that reveals that proton has an edge over photon treatment. I still find it difficult to believe that, with over 50 years proton therapy, we don't see more information about this treatment. We see many hundreds of millions of dollars being invested in proton facilities, which I would like to equate with confidence in the success rate, but cities spend just as many milliions on loser NFL and NBA teams, so go figure.

I am committed to proton therapy. I have heard and read peronal stories of other men my age, and older, choosing proton treatment and being happy with their decision. I will see you on the other side of my first dose of proton goodness. Thanks to all. Best of luck on your own journey. God bless.

I have finished 31 of 39 proton therapy treatments at Orlando Health with Dr. Nanda. I rented a townhouse about 15 miles south of the hospital where my family (wife, and boys 6 mos, 5 and 8 years) have been staying since October 15. I elected to take two months off work while pursuing treatment, so we have been mostly going to Disney (bought annual passes) and laying around the house. United Healthcare is my carrier and they agreed early on to pay the costs of treatment. I had to take out a loan to cover expenses, as I am still having some difficulty getting my Cancer Support Coverage to reimburse transportation and lodging. We have been fortunate to have friends come to visit us here during our stay, and I've been able to be active with those friends during their visits.

Treatment has gone well, with very minimal side effects. I purchased a pocket sized notebook to keep track of daily complaints and symptoms, bowel movement times, diet, and exercise. I keep track of anus pain, anal irritation, rectal bleeding, diarrhea, urgency, incontinence, flow, erection, ejaculation, and I've added a few mental items like stress, fatigue and mental accuity. So far I have had zero rectal issues, aside from some mild hemorrhoids. My worst fear was having rectal issues that would start early on and then get progressively worse with the daily insertion of the balloon. I did not have any issues.

Urinary urgency started early on in week two, but never became a problem. I was warned by plenty of proton survivors that urgency would be the primary symptom, and I was ready. Mild flow issues started in week five, but those two were not serious. Another patient in therapy with me was complaining of a lot of pressure in his bladder, but I have not had serious pressure pain or flow issues. I use a scale of 1 to 10 for all of my "black book symptoms" and at worst my flow was about a 5 on a single day, with that resolving to about a constant 8 now 1.5 weeks from finish.

The therapy itself has been a breeze. I am at the hospital no more than 40 minutes a day (and that long only for my weekly visit with the doctor after treatment). Orlando Health has free valet parking for radiation patients (a $3 tip every day for 40 days makes it less than free) and I can get in and out in 30 minutes. Time on the table for radiation is 1 minute for balloon insertion, 5 minutes for alignment and x-rays, and 2 minutes for radiation. Then I'm off to the changing room to wipe the lubricant off my rectum (I cannot make a higher recommendation than securing some wet wipes and using them for EVERYTHING), change and leave.

The most difficult task has been controlling my bowel movements so that my bowel is as clean as can be for the 7:30 a.m. balloon insertion. It can be a painful event if you have not had time to properly prepare. Getting into a routine is essential for being ready, but you may not know your therapy time until just a few days prior to starting treatment, or you may be changing times during your treatment. I started at noon treatments, moved to 10:30 a.m., and then settled on a 7:30 a.m. start time. Having the urge to pass stool just prior to your therapy time is inconvenient, since you are also required to have a full bladder at the time of your appointment - and voiding your bowel without emptying your bladder is a magic trick I have never mastered.

I have had no issues with walking five or six miles a day after therapy at the Disney parks with the kids following my therapies (which I arranged to be done at 7:30 a.m.). I had some issues sleeping early on, but wanted to avoid night time aids, so I bought some sleepy time tea. I don't recall a single day that I was unable to participate in an activity due to side effects from therapy.

At every Monday visit, the doctor is interested in whether I have experienced blood in stool or urine (no), pain with urination (no), pain with erection (no), and fatigue (no).

As a father of three young boys, and a teenage daughter, I have some active days, and am tired after those days, but I have yet to be able to identify any actual "fatigue" that I could attribute to the therapy treatment.

I have experienced no urethra pain other than a few quick tweaks I experienced in a five minute period of time on a single day. They never recurred. I have had no reaction from the radiation at the left and right hip locations where the beams are being shot. There is some very light pinkish coloring like a sun burn, but no pain, itching or discomfort.

I have continued to have sex during treatment, with the ability to get and maintain a full erection, strong enough for penetration, and to climax to completion. In week two, I had the sensation upon orgasm that someone was pinching the base of my penis, which caused some sensation of pressure upon orgasm. This week, in week 6, I am still able to get and maintain a full erection, but orgasm is somewhat painful. There is a sensation of pressure, and little to no ejaculate expelled. The doctor says that my prostate is getting beat up pretty bad, and the prostate has to squeeze to ejaculate, and the inflammation of the prostate is causing the pain and discomfort during ejaculation. He recommends ibuprofen prior to sex.

Something I do recommend, ask your doctor to put you in touch with the Chief of Proton Science at your treatment center. I was very interested to learn more about the proton machine and the patient-specific devices (compensator and aperture) that they use each day to shape the proton beams to my prostate. After treatment one day I got to sit down with the Chief for about an hour and talk to him about protons and all sorts of scientific voodoo and magic. I even called the local manufacturer of my wax compensator, who was more than happy to set up a tour of their facility to how how they make these devices that slow down protons to treat my prostate.

We will be heading back north from Orlando to Memphis in about two weeks, after which we will be coordinating with my local urologist to get PSA tests in three month intervals.

So far, I have been blessed and lucky to have very minimal side effects with treatment, and I hope that continues. I will keep you advised. Happy Thanksgiving.

Good luck on your journey.

I finished my 39th proton therapy session at UF Health in Orlando on December 6, 2020. We had been in Orlando living for eight weeks during treatment and were learning to love it there when it was time to come back home to Memphis. I was back to work 10 days later full time.

My first follow up visit was March 4 when my PSA was down from 3.1 in January 2019 to 2.3. I would have liked to see a bigger drop, but down is down, so I'm not concerned. I followed up with my personal urologist who, unfortunately, I found had not been kept updated on my treatment. He had no idea that I had been through proton radiation treatment, and only saw my PSA dropped nearly 1 full point. He did not admit it, but I believe he probably subscribes to the "removal is best" school of prostate treatment.

I have never had any incontinence issues. I have some urgency issues but they are occasional, maybe once every other day. Maybe once a week I have some very minor flow issues but no more than I would expect at 48 years old. There remains some very minor discomfort on ejaculation, but not enough to deter sex. I have full erection and no issues with penetration.

I politely asked the proton clinic to hold on to my aperture and compensator (they are radioactive and have to sit a few weeks) and send two of them to me for a souvenir. They arrived last week and I have them displayed in my office.

Good luck in your journey.

My six month PSA came in at a 1.43 down from 2.3 at the three month mark. At diagnosis I was 3.1. I remain happy with the choice and the outcome of proton therapy, and expect the numbers to drop further in September 2020 and at my year mark in December.

At diagnosis in July 2019, I weighed in at 178 pounds at 6 feet even, and changed my diet immediately to forego red meat, whiskey and milk - alleged cancer contributors, and all the wonderful things that made me happy. My diet now includes more vegetarian dishes, green leafy vegetables, garlic, onions, carrots, with some fish and occasionally some lobster and crab if I splurge. My alcohol intake has been severely cut down, and now I only occasionally have a glass of wine or a margarita. Almond milk in my cafe "latte" instead of cow milk is the worst menu change for me. However, I shaved 23 pounds off and have remained at 155 for the last 6 months. It's a little light, but I feel better.

I can't discern any side effects. The extreme urgency to urinate that accompanied treatment subsided in the weeks after I returned home. I do have a sense of urgency when my bladder is full, but I imagine that is as much due to age as any anatomical change. I try to continue the habit of drinking a lot of water that I picked up during ritual therapy, and that habit is easier with flavored seltzer water. I have never had any anal bleeding or blood in the urine or ejaculate. My erections are still as rigid as prior to treatment. Ejaculate is much less in volume and continues to shrink. I don't have pain with ejaculation, but occasionally I have a burning sensation upon climax that can be powerful and somewhat unpleasant. It lasts as long as the orgasm. I was told during treatment that this was caused by the swelling of the prostate and being beat up by the protons, but it has not lessened. It does not affect the enjoyment of sex, and it is not unpleasant enough to deter me.

About three weeks ago I started to have moderately painful muscle cramps from the calves up into the back of my legs and butt bilaterally. The tightness ran right through the hips where the radiation had passed. I don't know if this is a result of the radiation treatment, and can't find other people complaining about muscle cramps 6 months after treatment. It has just now started to subside.

Nothing else to report. Other than diet, I have had no change in my enjoyment of life or activities. COVID-19 has kept me indoors for the last three months, so that might explain the leg cramps. I don't know that proton radiation to the prostate makes us immune-compromised for the sake of being more susceptible to the virus, but I am not taking any chances.

I am blessed. I had no pain or symptoms prior to diagnosis, no difficulties or complications during treatment, and continue to have no symptoms, complaints or issues post-treatment. I attributed most of this success to the early diagnosis and my age (49 this year).

May God be with you on your own journey.

Nearly three years after proton therapy I am still happy with the choice I made. My PSA remains lower than it was at diagnosis, but it has NOT reduced to below zero. It is, however, continuing a slow downard trend, and a consult with a cancer doctor in Memphis triggered no concerns.

My PSA scores since diagnosis at 3.1 and after treatment have been inexplicably up and down and in order: 2.3 1.43 1.55 2.3 1.02 2.08 and most recently 1.26 (nearly 3 years after proton therapy).

Around the 1.5 year mark, I began having an increase in blood in my stool. I took no action until one day there was a sizable increase in the amount of blood in my stool and I went in for a colonoscopy which discovered radiaton proctitis on the rectal wall which was repaired during the colonoscopy using argon plasma coagulation (APC). I have since had no further indication of blood.

I continue to remain steadfast to a diet without milk, much less alcohol, and far less red meat. I have remained at a weight less than my pre-diagnosis weight, and feel healthier. I continue to be sexually active, having full erection and penetration as well as enjoyable climax.

In the three years since my treatment, I have spoken to numerous men about my treatment choice and my journey and have directed them to this site. Several of those individuals have chosen removal of the prostate and gamma knife treatment.

I encourage you to speak to other men and provide honest answers to their questions. Good luck on your journey.

Nearly four years after my July 2019 diagnosis and finishing my proton radiation therapy in December 2019, my PSA finally dropped below 1 for the first time, coming in at 0.56 just last month (May 2023). I was most pleased. It has been a very slow decrease, but the overall trend has been down, which has been encouraging, but not wholly satisfying until this 0.56. I am currently getting a PSA test whenever I remeber, with probably 8 months between the last two.

To date I am aware of no side effects from the radiation. I continue to be sexually active with full erection and climax. Ejaculate is nearly nothing, but the climax is enjoyable. Having chosen proton therapy primarily for the sake of continuing my enjoyment of life, at age 52 now, I am still glad of my decision, and hope that if Proton Therapy is for you, it brings you great results.

I have had no more rectal bleeding and no rectal discomfort. I have gained most of my pre-treatment weight and gotten a little lazy with my diet, but continue to be entirely milk free (leading contributor to cancer) though I'm pretty friendly with cheese, so dairy is not entirely out of my diet. I try to continue to eat a diet rich with greens, cabbage, and high anti-oxidants.

Good luck on your journey, my friend. I don't know you, but you are in my prayers.

A recent move to Lincoln, NE has required me to secure a new urologist, and I am happy with the new doctor. Continuing PSA tests every 6 months. October 2023 saw a drop to .30 and I am due for another PSA test nex month. Continuing to have no side effects from proton treatment that started 5 years ago this month.

I have had the pleasure of speaking with several men from this website and referrals from friends looking for information about my treatment. With 5 years having passed, I have not been keeping up with any changes to protocols or treatment, so maybe my experience with treatment is no longer current, but I am always happy to share information.

God bless, and good luck in your journey.

Joe's e-mail address is: joebroy AT joebroy.com (replace "AT" with "@")