Seven Months After Treatment

As I reported before, my PSA upon finishing treatment at PTI was 0.05. Three months later it was 0.2, and three months after that, it was still 0.2. The number is expected to fluctuate for awhile, and it's the long-term trend that's important. My doctor thinks as long as it stays below 2.0 it will be fine, and the current trend certainly bodes well for that.

The usual procedure is to return to Jacksonville for a six-month follow-up visit with the doctor. He was booked up for January, so Ursula and I returned Monday, after seven months. The doctor reviewed my PSA results and the online forms I submitted a week earlier. He saw nothing that indicated any issues with damage to my internal plumbing. Some damage is common with surgery and traditional radiation, but not with proton beam therapy, so neither of us was surprised. He also gave me a DRE (digital rectal exam of the prostate) and felt nothing out of the ordinary. All in all he was quite pleased but, again, not surprised.

We have been very busy at home working on getting our house fixed up and ready to sell, so we didn't stay in Jacksonville for the Wednesday Lunch Bunch. Maybe next time.

Next: I will get PSA tests in April and July, and go back to PTI in late July for my one-year follow-up. The future continues to look bright.

Going Forward

My post-treatment life is off to a good start. My PSA (proton specific antigen) score had risen slowly since 2013 from 3.5 (normal is usually considered under 4.0, unless it's rising). It was up to 4.1 in 2014, 4.6 in 2015, and 6.0 in late 2015. By late 2016 it was up to 7.1. Before I started the ADT (androgen deprivation therapy, aka stopping production of testosterone) in February, my PSA had reached 8.15. But after three months of ADT, at the beginning of the proton beam therapy, my PSA had plummeted to 1.07. When I completed treatment (still on ADT), my PSA was even lower: only 0.05.

Now, PSA is a tricky and imperfect number. It can continue to fluctuate, depending on the individual and on various factors such as prostate irritation and infection, cancer regrowth, and seemingly random other reasons. My current PSA is considered a baseline that will be used along with future values to determine the long-term trend. But this a GREAT baseline.

My next PSA test will be in October, with another in January. Then, in February, I'll go back to Jacksonville for a follow-up visit and complete examination. While there, I'll try to make it to a Wednesday Lunch Bunch. I'll be an alumnus, and invited to say a few words after the meal.

I'll continue to have regular PSA tests after that, but I'm very optimistic about the results.

Meanwhile, I'm getting back to a normal life in Tallahassee. I restarted eating beans and broccoli, and other potentially gas-producing food, right after the proton beam therapy ended. I started taking anti-oxidant supplements, including Vitamins A, C, and E, turmeric, and Co-Q10, today. By the middle of August there will be no problem going back to regular consumption of bladder irritants such as spicy and salty food, coffee, beer, and wine (although, I must admit, I've had some of those items already and haven't had any new bladder issues. I'm also following my doctor's recommendations for healthy eating and exercise.

The future looks healthy and happy.

Coming up: Links to helpful web sites and reading material.

Photos II (PG-rated; may be unsuitable for small children)

The therapists are often asked to take pictures near the end of the treatment cycle, and on the day of my next-to-last treatment in the Blue Gantry, Michaela and Kelly were happy to oblige.

In the first picture, I have settled into my pod (the blue part under me). I'm wearing a hospital gown, open in the back. From my waist to my knees I also have a towel over me. This gives me the illusion of modesty, while the therapists tug and push my legs and hips into the position needed, as determined by laser beams. I get to keep my socks on; the tile floors are a bit cold. I'm holding a blue rubber ring, so my arms don't droop and possibly pull my body body out of alignment.

At the moment, the place from which the beam emerges is not in position; it's clearly aimed too high. I get positioned first, then the beam. Also, the collimators and plastic modulator are not yet installed in the nozzle.

The large darker disk behind me has two rectangular shapes. Each is the end of an x-ray arm. The whole disk rotates, to bring the x-ray arm into the proper orientation. The entire beam apparatus also rotates, including the gray-and-white "nozzle," the blue housing around it, and all of the beige steel behind that. The therapists have already put both the disk with the x-ray arms and the beam apparatus into approximately the correct orientation for treatment on my left side. When treatment is to be on my right side, the beam apparatus rotates to the top of the room and back down the other side, almost 180 degrees. The x-ray disk also rotates, about 90 degrees clockwise, so there is an x-ray arm at the top. Some people (prostate cancer patients and others) get treatment on both sides during the same session (one side at a time, of course), so they get to see all of the movement.

In the picture below, the initial alignment is complete. One of the x-ray arms has emerged from the back, and is positioned to look at the gold markers installed in my prostate. The beam apparatus rotates slightly, as necessary, and the bed may move slightly up or down, to get the prostate in the cross-hairs, so-to-speak. Note that the brass collimators and plastic modulator are sitting out in the foreground, ready to install in the beam apparatus after everything is aligned.

Next, the therapists retract the x-ray arm, install the collimators and modulator, and leave the room. The single cyclotron proton source is shared by the three treatment areas, so there may or may not be a wait of a few minutes. Soon I hear a whine that rises in pitch. This is the activation of the beam modulator that controls the intensity of the proton beam now being directed into the beam apparatus in my gantry. A couple of minutes later, the whine falls in pitch, and stops. The treatment is over, and I didn't feel a thing. The x-ray arm may come out again then, to check that everything is still in place; that got less common later in my treatment weeks, as I apparently have a prostate that doesn't move around much. When the therapists come back into the room they take the rubber ring out of my hands, lower the table, and help me down to the floor with the help of a step-stool. Nothing left to do but grab my ID card, ensure that the therapists have written down the time and gantry of the next day's treatment, and head for the conveniently located rest room. A quart of water is a lot to hold for an hour! Then I get dressed and walk back to the waiting room. At first I left the building quickly, but as I got to know the other prostate patients and their wives, I stayed and chatted a bit. When Ursula was waiting for me in the waiting room with the others, it was sometimes difficult to drag persuade her to leave.

Photos I (G-rated)

Here are the last things the proton beam saw before it got to me. First, the two brass collimators, together, defined the 2-dimensional shape of the beam when it came from the left side. Each was about 7 inches in diameter and about an inch thick, and each weighed about 5 pounds. Each was made specifically for the shape of my prostate, as seen from the left side.

The third object above, also shown in close-up below, is a hard plastic piece that was added to the stack after the collimators. It's about the same diameter, about twice as thick, and weighs about three pounds. It was sculpted to modulate the intensity of the beam specifically for my prostate. The central part is very thin, and lets most of the protons through. The rest of the sculpted-out part is thicker where a less-intensive beam is needed. The final beam that reached me matched the three-dimensional shape of my prostate.

Each piece is coded with H (head), F (foot), P (posterior), and A (anterior) to ensure that they are inserted into the apparatus in the correct orientation. Each piece also has a label on the edge, seen below, with my name and a bar code. The therapists scan each piece, as well as the body pod and my PTI ID, to make sure that everything matches.

Two more brass collimators and another plastic beam modulator were made to fit the shape of my prostate as seen from the right side. After my series of treatments was finished, the four brass collimators were melted down and recast for another use. The two plastic modulators can't be reused, and I got them as souvenirs of my treatment. I'm not sure yet what I'll do with them. Other recipients of these souvenirs have mentioned some possible uses, including bookends (when mounted on pedestals), ashtrays, nut/candy dishes, and large jello shot molds. I may just hang them on a wall. If located in the living room, they would make excellent conversation starters.

The collimator precision is wasted if the beam isn't aimed accurately. First I settled into the body mold that was prepared for me before treatment started. Then laser beams, pre-programmed for me, were aimed at a target on my hip, marked with permanent marker and covered with a 1" diameter plastic film. The marker locations were established the same day the body mold was prepared, using an x-ray to first establish my exact prostate location (using gold markers previously installed in my prostate). The green marker is used to adjust the proton beam so that hits to within a millimeter or so of its intended target in the prostate. The beam where it enters is offset from the marker. In the picture below, the reddish patch that is mostly below and to the left of the marker, and about three inches across, is where the beam actually hit. This is the "proton sun burn" and various from man to man, depending on skin type and sensitivity. Mine is hard to see without looking carefully, but some men have much redder patches that may itch and flake off. Like a sun burn. The "proton sun burn" will fade away before long, leaving me with only the plastic modulators as souvenirs.

Next post: I'm the center of attraction in the futuristic treatment area.

Reducing the Risk of Initial and Recurrent Prostate Cancer

One of  our Wednesday Lunch Bunch meetings featured a talk by a PTI doctor about prostate cancer risks, both initially and after treatment. He discussed a variety of research studies, and noted that some were contradictory and some recommendations have changed over time. From out of the data he pulled his own current recommendations, and put them into a handout. They don't come with any guarantees, and his recommendations may change as new research is completed, but here they are for now:

Measures That May Help Reduce Risk of Developing Prostate Cancer

• Daily Enteric Coated Aspirin
• BMI less than 30 Kg/sq m (Get Slim)
• Physical Exercise, Adequate Sleep, Frequent Safe Sex
• Plant-based diet with Tomatoes, Soy, Broccoli, Nuts, Berries, Fatty Fish, Green Tea, Coffee
• Vitamin D
• Avoid Large Doses of Vitamin Supplements including Vitamin E, Folic Acid, Zinc
• Avoid Whole Milk (Dairy) and Processed Meats

Measures That May Help Reduce Risk of Recurrence After Treatment

• No Smoking
• BMI less than 30 Kg/sq m (Get skinny)
• Exercise- ≥3 hour vigorously, or 7 hours of brisk walking, per week
• Plant-based diet that includes cruciferous vegetables, nuts, olive-oil
• ≤2 servings of meat per week, and avoid red, processed, fried or grilled
• 4 cups of coffee per day
• 1 glass of red wine per day
• 1 glass of Pomegranate Juice
• Daily 85 mg Enteric Coated Aspirin (AKA baby aspirin)
• Avoid Large Doses of Vitamin Supplements, especially Selenium
• Avoid Whole Milk (Dairy)

Graduation Remarks

Newbies, Graduates, and Alumni are invited to speak at each Wednesday Lunch / Meeting at PTI (the Proton Therapy Institute). Three days ago I attended my last Lunch as a patient, so I was officially a Graduate. Here is what I said. If something doesn't make sense to you, well, the other prostate cancer patients knew exactly what I was talking about.

I’m Gordon Morgan and this is Ursula, my wife and traveling companion for four decades.

I worked in the Florida Department of Transportation for a long time, so I often think of life in transportation terms…

Not long ago, life for Ursula and me was like a fun trip rolling down a highway (think I-10 between the pines, not I-95 between the construction cranes).

Suddenly, there was a detour sign: Prostate Cancer, Exit here.

Following the exit, I saw several more signs: One was This way to radiation, it will work for a while. Another was Turn here for seeds, they’ll probably work. The biggest sign was: Straight ahead for surgery (that sign seemed to lead to a steep drop-off at the end of the road).

Finally, I spotted the path to Jacksonville and proton beam therapy. It was not heavily traveled, but it looked promising.

That path took me through a region of X-rays, MRIs, bone scans, CT-scans, and more. But finally, I got to my destination—which turned out to be... a cruise ship! The SS PTI! I had never been on a cruise ship, but I could tell what it was.

The Admirals of the Fleet (The Executive, Physics, & Medical directors) got the ship built and outfitted. Thank you, especially Dr Mendenhall.

The Captain, for me, was my doctor: he learned where I’d been and where I needed to go, and set the course for my personalized treatment. He also arranged to give me a special OAR, but I never had to help row the ship. That’s good, because the Space OAR is stored in a place that I can’t reach. On the other hand, he took away a hormone--but I’ll get it back later. Thank you, Dr Henderson.

The First Mates (my Case Managers) made sure I followed the Captain’s orders, answered all my questions, and were always available if I needed anything. Thank you, Petro and Alicia.

There were special sailors in the ship dispensary, AKA the Nurses’ Station. They took vitals, helped with procedures, and greeted me cheerfully when I arrived. Thank you, Maggie, Tia, Evelyn, and all the others.

A variety of specialized deck hands staffed the Blue Deck and the Yellow deck (I never saw the Red deck). They were friendly as well as efficient as they helped me settle into a comfy place to lie down every morning…although they only let me stay there a few minutes. And they didn’t serve drinks...but there was plenty of water. A LOT of water. Thank you, John, Jeff, Donny, Loren, Courtney, Laura, Hannah, Dominick, Michela, Tasha, Kelly, Devin, Cindie. Hope I haven’t left out too many.

The SS PTI has many kinds of accommodations for the passengers…Ursula and I were on the Third Deck in the Main part of the ship (Third & Main) quite near the heart of the ship. The smiling stewards there made sure we had everything we needed…and threw an occasional party for everyone. Thank you, Melissa & Debra.

Below deck were the unsung heroes, the physicists, mechanics, and electricians who kept the ship moving. I never saw them, but I appreciate them. There were a few issues, especially on the Yellow deck, but they always got us moving again…sooner or later.

The other passengers on the USS PTI have been amazing. We got to know each other, traded stories and tips for dealing with occasional rough seas, and we made some valuable friends. Without them, it would have been a much longer trip. Thank you to all of you.

The SS PTI encouraged us to get to know each other by providing a large and comfortable waiting room (with Gerri, and now Stacy), support group meetings, and free lunches. Our Social Director hosted meetings, introduced speakers, and answered questions. He also selected and coordinated visits to various ports of call…Italy, Mexico, several sea ports, and other tasty places. Thank you, Brad.

Ursula and I have reached the end of our voyage now. We’ll remember all of it fondly…well most of it…and we’re certainly glad that we got the chance to join so many wonderful people on the SS PTI.

Done!

That's it. I'm finished. It's complete. 39 out of 39. No more getting up at 5:00 am (necessary for the 6:30 am treatment time that I wanted). No more restrictions on beans and cruciferous vegetables (although Ursula cautions me to not rush into anything she'll regret).

My last treatment was at 6:30 this morning. Ursula brought delicious brownies and pecan muffins to distribute to the other patients, the nurses, the therapists, the helpful lady at the waiting room desk, and even the man who watches over the car parking out front. I rang the ceremonial chimes at 7:30. Then it took a while to say goodbye to the other patients/friends, what with all the handshakes, hugs, and well-wishes. Many of the others are also getting close to completion, and everyone was happy.

We still need to pack up and clean the apartment, but we're not in a great hurry. The hard part is over...and it wasn't really even hard.

I'm leaving PTI feeling great, with a lower PSA (as of yesterday morning). I was told that the PSA often takes a while after treatment to go down, but mine has already. In fact, it's so low that I want to wait until my next PSA test results to confirm it before publishing the number. That will be Monday, in Tallahassee.

Much has happened in the last couple of days that I want to write about, including the little speech I gave at my last Lunch Bunch meeting yesterday. I didn't get a standing ovation, but more than a few people told me it was great, both more humorous and more interesting than most. I'll include it in a later post.

Also coming up: pictures! Nothing too graphic, I promise. That post will be mostly G-rated, with maybe a PG picture or two. Stay tuned!