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Proton Therapy – words and pictures from my 8 weeks of treatment and 5 year follow up - For Prostate Cancer                                                               

PROTON THERAPY 2015

Last night, at a little before 10 pm, I was waiting outside in the thick Florida night air, drinking my 16 ounces of water, 30 minutes before my treatment. That's the drill. The water fills your bladder, which helps move it away from your prostate gland when the proton beam is delivered. I am being treated for prostate cancer at the University of Florida's Proton Therapy Institute in Jacksonville. I am taking cell phone pictures when I can. Bradford Hoppe is my doctor. The following is my account.

March 15-16 Staging

It is called 'image Guided Prostate Therapy'. It is very exact. Before you begin your 39 treatment routine you go through a two day staging visit. First, four tiny pieces of gold coil are implanted in the prostate during a biopsy-like procedure. Mine was painless. The coils serve as the primary benchmark which is location-referenced by x-ray to accurately align the patient for each treatment session. During the staging visit, a cat scan is made and used by the radiation oncologist to develop a specific treatment plan. Ink marks are made on each hip. These are maintained throughout the 39 sessions. The marks are referenced by lasers and become the initial reference points when a patient first lays down on the treatment table. A vacuum formed bean bag cast is made for the lower section of the patient's body. Keeping the patient in the exact same position for each treatment is paramount. "You should tolerate this very well," my doctor told me before my treatment routine began.

How I Hear It Works

I asked if I could go backstage to see the cyclotron equipment but I was told no, the area was radiation 'hot.' Proton treatment is different from conventional radiation treatment. Conventional radiation uses photons – proton treatment uses, well, protons. The advantage of using proton radiation (they are both radiation) is that the protons are thought to attack the cancer cells more and the normal cells less. More importantly, the proton beam releases its energy in a 3 dimensional area known as the 'Brag Peak' so the radiation striking the treated area starts and stops right there and goes no further. Compare that to conventional radiation, which strikes the entry area, strikes the treated area and then continues on through the body to exit on the other side and you see why proton treatment lessens the chance of 'collateral damage' to other organs.

Before I started my therapy my PSA was 13.2, My urologist tried to impress on me that proton treatment was more expensive than conventional radiation treatment and therefore it was a huge drain on the public healthcare system. 'Conventional radiation is just the same,' he told me. I told him he was my doctor and not my account and that he needed to focus on the treatment that would be the most effective and the easiest on me. He later admitted he didn't know much about proton therapy. From talking to other patients who were seeing other doctors, I came to realize this was a common problem.

Proton therapy appears to be more suitable and more gentle during recovery than conventional radiation for certain cancers like prostate, but treating head, neck, eye and spine cancers in children is where proton does it's most valuable work. I would guess that 10-percent of the proton patients here are children. This is not a black-art science, patients are routinely referred here from big hospitals like Mayo Clinic and Johns Hopkins. I am happy if proton treatments for children are somehow financially bolstered by treatments to prostate patients. It is, in my opinion, exactly the right thing for the health care system.

Proton therapy requires splitting atoms. They do it with a three-story-tall cyclotron housed in a cement bunker behind the treatment area. Hydrogen is the atom they extract the protons from. After spinning them up, they shape the protons into a beam and direct it into one of the three treatment rooms - 'gantrys' they call them. If you listen carefully when you are on the treatment table you can hear the whirr of the cyclotron spinning up and the whine of it spinning down, but I am over simplifying the process, considerably.

In the treatment room, the gantry rotates around the patient. When you are lying there, it makes it seem like you are slowly moving, but you are not. The sensation is similar to vertigo. I don't mind it at all. Both conventional x-ray equipment and the proton delivery unit move with the gantry. When not needed the x-ray units retract back into the gantry wall.

For prostate patients, the usual procedure is to direct the beam through the hip area and at the prostate. They alternate sides, right side one day, left side the next. Treatments are 5 days a week, the weekends are days of rest for the patient's body, the gantry crew staff and the machinery.

Daily treatment times often change slightly. Patients keep up with the changes through an online gantry clock.

April 7- First Treatment

Part of the treatment is a small un inflated balloon that is inserted like an enema. The balloon is no big deal. It is well lubricated. They fill it with saline solution to inflate it and protect the part of your rectum that is next to the area being treated with the proton beam. You drink you water and one of the therapists comes out to the lobby to get you. The therapists are mostly young (30-something) men and women. They escort you into the treatment area where you change into a hospital gown. They call you into the treatment room, you lay on the treatment table, get the balloon, get lined up and get treated. It doesn't take long. Six minutes is the record from the old days (when the routine was different) one tech told me. Today most treatment sessions take 15 minutes but you are actually getting protons for only about a minute and a half. You don't feel a thing.

The hardest part of my first week of treatments was the waiting. New patient's are all scheduled late into the evening. That didn't help the stress level, and holding my bladder full at the end of the day wasn't always easy, but the stress went away soon enough and routine took over. I am walking 3 or 4 miles every day. I have no symptoms after week one.

There are white hand towels in the dressing rooms that are stored along with the hospital gowns. After treatment I take two towels into the bathroom to wash up. My first impression is that this area of the prostate treatment routine could use a little more finessing and some softer towels.

They ask you to watch your diet, not gain or lose more than 5 pounds during your two month visit. Gas can move your prostate during treatment so they ask you not to eat foods that will give you gas. They call it the 'Fart Free Diet.' You should figure this diet out and go on it a month before you start your treatments.

April 15 - Week Two

Patients are treated from 6:30am until 11pm and sometimes later. They treat numerous different cancers besides prostate cancer, although prostate cancer patients appear to account for about half of the case load. Proton therapy isn't new. Patients have been routinely treated with protons since the Loma Linda California Proton Therapy Institute opened in 1990. Today there are 8 proton centers around the US with more under construction. I still have had no reaction to my treatments, other than all the drinking (we are asked to drink 100 ounces a day) is making me pee a lot.

For prostate patients, the proton 'gun' is fitted with a thick brass aperture which has been manufactured by an in house 'shop' to exactly match the shape of the individual patient's prostate gland. The ones shown in the pictures are mine. There is also a clear aperture which is an acrylic computer generated 'map' that is used to further 'shape' the proton beams strength at different parts of the targeted area. One template and one acrylic are made for each side of the body.

April 17 - Week Three

I'm starting my third week of treatment. Waiting for treatment is a lot like being a fireman on call. Sometimes they will call you with a much earlier appointment, like 9am, which frees up your entire day. So when the phone rings with that call, you drink your water, drive over and get treated. ZAP! You are in and out in no time. I feel great, some of the other guys call the first few weeks of treatment The Proton Vacation. One day I thought I was having an adverse reaction but it turned out to be from spicy Asian food. Never the less, as the next 6 weeks progress I have been told I may experience some tiredness, soreness or minor burning when I pee. I have nothing new to report.

Sitting in the waiting area, looking around at the bald headed little children playing in the kids room. Seeing their parents staying positive day after day, talking to other guys my age, some with much worse things than prostate cancer, I am thankful that this technology is giving us all a chance.

End Of Week Three - April 24

I'm just back from my Friday noon treatment.
After three weeks of getting the balloon 5 days a week, by Friday my butt begins to feel 'puffy'. This lasts a few hours after treatment and is most pronounced at the end of the week. Soaking in a cool tub and showering right after treatment seems to help. I've been using neutral balanced hospital soap to wash. I've been sleeping well at night, partially because I am exercising so much and mostly because the bed is brand new high tech foam and I keep the air cold. It's dead quiet here too, but if I'm up early I can hear the 5:45 train whistle it's way to the station and then whistle it's way on to where-ever-it-goes at 6 o'clock.

Week 4 April 25

My treatments are now more in the mid-day time slot. The washer and dryer are getting a work out. I am not comfortable sitting at my desk right after treatment so my routine is to walk a mile and run and walk some more after treatment. My doctor says at this point in treatment exercise is necessary, let alone good. I'm up to 84 total miles now and it's the end of the 4th week. I've got the faintest red sunburn like 'witness marks' on my hips where the beam strikes me and I think now, sometimes, it's a little harder to pee, but it's barely noticeable and not a problem. They tell me that is normal. I am using aloe and A&D ointment on it the sunburn, being careful not to wipe off my laser registration marks.

I've noticed that when they put the balloon in, if they don't position the stopper that holds it in place just right, it will pinch my butt cheek. Funny how there is always something new to learn.

They have now asked me to take one Aleve in the morning and one at night as an anti inflammatory. My daily medication is now: 2 Aleve, 4 saw palmetto gels and one cranberry concentrate capsule. It's all over the counter medication, so I am happy.

It's looking like rain today. I'm off to do a few quick laps around the Park. I've learned to dislike running on concrete so I stay on the asphalt or dirt as much as I can. Some days I am the only one going counter clockwise around the big circle in the Park. Don't they watch NASCAR?

I signed up for access to the indoor pool at the church around the corner. This coming Monday my treatments will be half way. The concession of my evening tonight is going to be buying chocolate covered popcorn in Avondale when what I really want is a big Grey Goose, on the rocks, at my house.

Week 5 Monday May 4

They treated me at 8 am today. I am half way done! Downtown traffic going and coming in this new time slot is heavy, but now I have the rest of the day off. I use Myrtle Street as an alternate route to avoid the traffic. I am still not having any significant reaction to treatment, although peeing after treatment stops for the weekend on Friday is harder for a day. I keep wanting spicy food, alcohol, crab cakes and barbecue.... then I come home and have a salad and a jello. Sometimes I'll get take out from the sushi restaurant down the block. It could be worse, for sure!

Thursday May 7

I see my doctor once a week. He is pleased with my progress. Today they started a 'reduction' in the size of the beam hitting my prostate - now it is slightly smaller. My treatment appointments have all been early morning and on time. 'I don't think you will have any worsening symptoms,' my doctor told me. I'm headed for the beach this weekend.

Week 6 Monday May 11

The guy before me comes out of treatment and tells me 'they ran out of the small balloons,... they only have extra large ones left!' We are always joking around. The new guys are asking me questions. I feel like an old timer, which I guess I am.
A new guy and his wife check in at the front desk. You can spot them, they always have a big folder with their complete medical history under their arm. When they sit down I introduce myself and we talk. New guys have questions, many questions.

I find I am napping in the late afternoons in the big comfy chair in my apartment. I have 14 treatments left. Did you hear about the new Italian suppository? they call it an in-u-en do. Always joking around. That says something about the gentleness of the treatments.

Boredom has set in. One day leads to the next. I asked my doctor how he knew this was working since I still have had no real reaction to the treatments. He asked me if I would like a component of pain introduced in my treatment program. More jokes! The daytime temperatures have been in the 90s. With my early treatments I am still not exercising early enough so the evenings are getting to be the best time for me to get out. If I had a calendar on the wall I'd be x-ing off the days.

Friday May 15

Funny what one week will do. Wednesday I was fine, Thursday I hit a wall. I was exhausted. That was the first day since I got here I didn't run or even go to the park. I stayed home all morning, went out for lunch, came back and went to sleep. Today I feel a little better, but I still don't feel like running. I'm tired and a little jitzy at the same time. Maybe it's finally catching up with me or maybe I am going through SBW - that's Southern Barbecue Withdrawal - it's been almost two months since I've had any pulled pork. Peeing was hard, on and off, for two days this week.

Next week is Memorial Day se we only have 4 treatment days and 4 again the week after that. If the radiation is catching up with me the shorter weeks should help let things calm down. Tomorrow I'm going to have to get some barbecue just so I can rule that out.

MoJo Barbecue in Avondale

Week 7 Monday May 18

I am feeling much better after the weekend off - maybe the barbecue really did help! The cyclotron software hard a glitch this morning so my treatment was an hour late. I went home, showered and headed for the park. I did an easy mile, came home and went shopping for food. I'm feeling all right again.

Friday May 22

The four treatment-day week was pretty easy. At our weekly visit my doctor told me 'from here on everything should be easier'. How much easier can it get? He said next week he would have an exit packet for me with information about going forward and future check ups. Next week is another four treatment-day week, then two treatments the week after and I'm done. I put a pair of shoes I won't need behind the seat in my truck today. In my head, I am now packing to go home!

Week 8

A little hard peeing Sunday night and Monday again. Not as bad as last week and by Tuesday treatment I am better. I had my exit visit with my Doc today. He gave me several pages of instructions and orders for two follow up blood tests. I was told my psa would decline to below 1 over the next 3 to 4 years. I was also told there could be some blood in my stool and/or urine at around 6 months as the healing concludes. Bleeding happens in less than a third of the patients I was told. If I wasn't so busy trying to run my business from up here I'd be kicking back and celebrating. Now it's just 20 minutes a day for two more days. I got it licked!

The last two days went quick and were uneventful. I got hugs from my treatment staff and a group of friends and staff came over to watch me ring the chimes. Then I checked out of my apartment and I was headed home. So far this has been as easy as advertised and for that I am extremely thankful. Now I am on to the next phase of my life, which I hope will be cancer free.

Me, ringing the chimes in the lobby of the Florida Proton facility, upon completing my treatment. It is a tradition all patients participate in.

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AFTERMATH

Two weeks after my last treatment -
When I started treatment my PSA was 13.2. I had Gleason 6 cancer in 4 biopsy cores and suspicious areas in two more cores. By the day of my last treatment my PSA had dropped to 7.5 which my nurse said was 'a great number to have at this time point.'

July 2 - One Month After

Nothing earth-shaking to report. I feel great and am in good spirits. All my 'plumbing' is functioning as designed. I have stopped taking the Aleve with no effect. It's too hot to walk or run so I'm swimming a lot. I seem to be a little more prone to sunburn. The two marks on my hips from the radiation have gone from a light pink to a tan color. I am up twice a night to pee. All is good and now we are headed to Colorado for a while. My 6 month follow up appointment at the Proton facility is in December

August 4 - Two Months After

Old habits die hard - I still find myself being careful when I pull on my swim trunks, so I do not to mess up the alignment marks on my hips.... which have been gone for two months now!

After treatment, patients are allowed to keep the plastic apertures used in their proton therapy. One of mine, now with a miniature ceramic pot in the middle, has found a home in the fish tank.

October 15

I got the following email from a fellow proton patient who was in treatment at the same time I was:

Michael, How are you?
Proton treatment is pretty amazing, 8 weeks of therapy with no side effects. I kept waiting for something to pop up the last few months, but nothing happened.
How are you feeling? I’ve decided to retire, it’s off to Margaret for me. Going through prostate cancer the last three years has been a reality check.
Enjoyed your blog, sent it on to a friend who is joining the club.
All the Best, Walter

November 9

I had blood drawn and a PSA test for my follow up visit next month. I am looking forward to going back to Jacksonville, having some tacos, and walking in the park.

December 15

Four and a half hours up to Jacksonville and four and a half hours back. My doctor's appointment took 45 minutes. All is good, my PSA is now down to 2.7, 'That's fantastic.' my nurse tells me. The doctor checks me over...'glad you are doing so wel. You could still have some minor bleeding, come back in six months.' I have had no bleeding, no anything and my plumbing is totally normal. So my wife and I went out to dinner and we walked along the river where I used to walk and I took my wife to lunch at my favorite taco joint. The whole visit was kind of anti-climatic, but that's what you want when you are recovering from cancer.

March 6, 2016
 No changes to report. All is good!

May 17

I had blood drawn last week for my upcoming June visit to Jacksonville. It will be one year since I completed my treatments. The results are online today and my PSA is now down to 1.4. They told me it would be 2 years before it was down to 0-point-something and it seems like we are on track. I'm looking forward to the carne asada tacos in Riverside and maybe tuna for dinner at the Bluefish restaurant in Avondale. Thank you God!

November 28, 2016. A year and a half since my treatment. I just had my six-month-interval blood work done and my psa is now down to 0.89. I am feeling great and all my 'functions' remain normal. I continue on my regemin of Saw Palmetto twice a day, My next trip up to Jacksonville will be in July.

July 5, 2017. Two Year follow up. We spent last night at the Hyatt watching the fireworks. My psa is at 0.9 my doctor is pleased." Anything under 1.5 is good," he tells me. He also says: 'If you can't come back next year please be sure to call.' I like the sound of that. I am feeling 100%.

June 20, 2018. Three Year Follow Up. My PSA is 0.3. I'm not going up to Jacksonville this year. No need to. I filled out some forms on line for a clinical study follow up. Life is Good, I still take two Saw Palmetto gel-caps every day, one in the morning one at night. I am buying them from the manufacturer in Naples Florida. I am 100% back to normal. Proton treatment works!

June 15, 2019
It is now four years since my treatment was completed. All things are normal. My PSA is still 0.3 I'm still taking one Saw Palmetto a day. I will have my 5-year call-back to Jacksonville this coming July.

 

June 2020
5 Years Since Proton
PSA still 0.2

They want patients to wait 5 years for a colonoscopy. I had a colonoscopy this year. All is good. My Doctor showed me the blood vessels in my rectum that are still healing. This is normal, he said. I have had no bleeding, or any other problems.

.

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RELATED THOUGHTS

My Symptoms

You have cancer but it's not bad. What does that mean? My PSA had gone from 1.2 to 13.2 in 6 years. I was treated twice with the antibiotic Cipro to rule out infection. After my PSA hit 4 my first serious test was a prostate MRI with the T-3 magnet machine at Johns Hopkins. It showed one area of concern. I was told I was a candidate for 'Watchful Waiting.' When my PSA hit 5.8 I took the new PCA3 test and scored (8.7) indicating I was in the low risk group. A year later I had a 32 core transperineum biopsy which showed two Gleason 6 areas (one at 10% one at 20%). The next year I had another MRI at Johns Hopkins which showed nothing, but since my PSA was now at 12, both my local urologist and the urologist at John's Hopkins recommended treatment. Six months later I had a 12 core biopsy at University of Florida Shands Hospital in Jacksonville. That biopsy showed two additional Gleason 6 cores at 20%. All the cores and images from all the test I had received so far had come from different areas of my prostate. My medical records file was over an inch and a half thick when I began Proton Therapy.

About Watching and Waiting -

If watching and waiting is suggested as an option for prostate cancer be sure to ask the person who suggests it, exactly what you are watching and waiting for - more cancer? a more serious cancer? a spreading cancer? The Gleason Score is used to rate cancer cells after a biopsy. From what I have read, Gleason 6 is almost a non-cancer, but Gleason 7 is bad cancer. Gleason 7 cancer cells always form next to Gleason 6 cells, but the vote is still out on whether a Gleason 6 cancer cell can itself become a Gleason 7. So there are many areas of uncertainty with prostate cancer. Ask your doctor specific questions and look for clear concise answers. You may be surprised at how few you get. In my case, my PSA rising above 12 had taken me from the low risk category to the clinically 'intermediate risk' group.

What Does Proton Therapy Cost?

If you want to write your own check, $160,000 was the number when I was there. A few patients mentioned $10,000 was the deductible portion under their insurance policy. Medicare with a supplemental policy like 'Plan F' covers the entire treatment. In all instances you still have to pay for your own lodging and food during your two month stay. Figure $1200 a month for lodging, then figure your food.

email me if you have questions:  wolfwengler@comcast.net

A family heads home, late at night, from the Proton Therapy Institute. Treating children for cancer is a specialty here

Routine maintenance on the proton delivery unit in one gantry. The entire 'white' area of the room can rotate around a patient 

  
The 'head' of one of the proton guns

  
                                                                     The apertures created for me

Body casts for patients being treated today   

       
        The balloon enema


A length of gold marker coil        

   
 Me in the Gantry - the protons come from the left, the units coming out of the wall are for x-ray positioning

 

 

Scenes around the St. Johns/Riverside neighborhood I am staying in

In my opinion living in the Riverside/St John's area is a great choice if you are getting treatment in Jacksonville. It's 13 minutes from the Proton Center, there are plenty of restaurants, shops, services, a Publix supermarket and great shaded places to walk. There is a first rate art museum that you can visit free as a proton patient, beautiful gardens, a weekend crafts market and Memorial Park, which is a beautiful spot on the water right in the middle of town. Shaded streets and parks become very important if you are here in the summer and you want to get outside.

 

   
I like to jog on the street along the river out back of my apartment or at Memorial Park

   
The Memorial park monument

 
The St John's River at night. My apartment is, roughly, under the clouds

The St. Johns shopping district

   
Hawker Asian Fusion restaurant - it may be a little spicy for me right now, but so good!

  
The local taco joint - they make their own tortillas

 
Me with my green runners at my favorite spot in the park

  
This is the block I am living on.

 
I'm in the apartment above the garage

  The church pool where I swim - and my living room              

 Thanks to Drew and Maggie Thoeni who rented me their spectacular guest apartment for my treatments. To me, that apartment was the ideal place to stay and I could not have asked for nicer or more accommodating hosts !

Content and images © Michael Heller 2015 and may not be reproduced in any way without written permission.