Another PSA Test, Another Perfect Result

[Photo by Steve Hoffman, Piatt County Journal-Republican]

On Saturday 17 September I had a booth to promote my Tae Kwon Do dojang at Monticellobration -- an annual celebration in Monticello, IL (where I have my dojang) featuring food, live music, and arts & crafts. I had 135 people stop by and break boards in just 6 hours; hopefully a number of them will sign up for classes. This picture was taken by a photographer for the local paper, the Piatt County Journal-Republican.

On the cancer front, things continue to go well.

The first and most important news is that my PSA remains undetectable (<0.01 ng/ml) as of mid-August, when I saw Dr V for another injection of Lupron. That dose will hold me for another 90 days. Around Thanksgiving I'll be headed back. At that time, I'll get another Lupron shot to keep my testosterone near zero, plus another shot of Xgeva to counter the risk of bone thinning resulting from the low testosterone.

Side effects are currently very mild. I continue to have hot flashes, but they're both less frequent and less intense than in the past. I try to get a little more sleep now to keep my energy up, and exercise has so far prevented weight gain or significant muscle loss.

In mid-September, I had my 90-day follow-up appointment with Dr Stanic, my Radiation Oncologist. I was still taking antibiotics for a case of walking pneumonia, and he provided a thorough follow-up to that, as well. He listened carefully to my chest, and ordered an X-ray for the day after my antibiotics ran out to ensure there was no remaining sign of pneumonia -- the X-ray was clear, and I'm well now.

We talked about the treatments I have gone through, and whether I had trouble with my urinary system (I don't). We also talked about sexual capacity, and he provided me a prescription for Cialis to help with the limitations I'm currently experiencing.


Dr Stanic made a point of telling me something along the lines of, "There is no evidence at this time that you have cancer." I greatly appreciate that he is trying to lead me to, once again, believe that I'm healthy. It was a tough shift of emotional state to internalize the knowledge of the presence of cancer. Once it's internalized, it's hard to get back out. I'm optimistic, but cautious.

I'll see Dr Stanic again in 6 months.

Insert Crystal Ball Here

Nomograms exist that statistically predict likely outcomes based on past results. There is a nomogram for newly-diagnosed patients that looks at biopsy results, tumor stage, and PSA level to determine whether Active Surveillance is sufficient or, if treatment is indicated, the likelihood of cure via either surgery or radiation.

Likewise, there are nomograms that statistically predict the likelihood of recurrence over time. The grain of salt here is that, to get a ten-year perspective on outcomes, you need to look at patients who were treated ten years ago. Treatments are improving every year, and the outcome for someone treated today is more promising than for someone treated ten years ago.

Those nomograms don't like the negative findings in my surgical pathology report -- Gleason score of 9, positive surgical margins, extracapsular extension, and a positive pelvic lymph node, though it was just one node, and there was no seminal vesicle invasion.

With every step that I take down the path of treatment, I enter into an increasingly specific, and therefore smaller, cohort of similar patients. I am now a patient who was stage T2c with a moderately elevated PSA prior to surgery. I'm not alone in that group, but since then I've had the pathology findings above, I've started neoadjuvant Hormone Therapy with Lupron, and then undergone a full course of radiation treatment. That puts me into a very small, very specific cohort.

Even so, from the research I've done, I believe that five years out I have a 40% to 60% chance of biochemical recurrence -- measurable PSA, indicating that there are still Prostate cells in my body, even though I've had my Prostate removed and the Prostate bed heavily irradiated. These cells would be presumed to be cancerous and systemic, or metastatic. At that point, treatments are still available, including chemotherapy. The risk of actually dying from Prostate Cancer remains pretty low, even if it comes back. I'm optimistic, but cautious.

Every PSA test that comes back "Undetectable" is a win. The next test should come before my Lupron injection at Thanksgiving. That will be the next new news in my journey. I didn't write this to be a Debbie Downer, so I hope it doesn't come across that way. I just wanted a written record of my thoughts regarding the question, "How in-remission am I, now that I'm really in remission?"

And, hey, I had 135 kids break boards at Monticellobration! That was a big day!

Your Struggles Develop Your Strengths

Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.

-- Arnold Schwarzenegger, in a 1982 interview with Marian Christy, "Winning according to Schwarzenegger", Boston Globe, Boston, MA, 9 May 1982, p 51


I'm happy to report that I have completed my 37 radiation treatments. All in all, it wasn't too bad. My first treatment was on Tuesday 19 April, and my final treatment on Thursday 9 June. The side effects were occasionally unpleasant, but were mild enough and infrequent enough that I mostly ignored them.

On the final day I wore my Relay for Life "Survivor" t-shirt. I got to ring the brass bell in the reception area to mark the end of treatment. The bell is mounted on a plaque that includes the above quotation. On the plaque, it's attributed to Mahatma Gandhi, but I'm a quote junkie, and a little research convinced me the citation I provided is accurate. But it's still a great sentiment in this context. They also gave me a nice Certificate of Completion, signed by all the staff members, including Steffany, Stefanie, and Stephani.

That final radiation treatment was at 9:00AM. I would have written earlier, but by 11:00AM that same day I was on a bus to Europe (well, a school bus to O'Hare) as I chaperoned my daughter's school class trip to Ireland, Wales, England, and France. I'm now back home with many memories and many photos from the trip.

I'm not done here yet. In late August I'll be at 90 days after my last visit to the oncologist, and due for another Lupron injection. That should be my next opportunity for a PSA test. And in mid September I'll be at 90 days after radiation. At that point I'll see my radiation oncologist and likely get another PSA test -- looking for "undetectable" levels, preferably <0.01.

Say Hello To My Little Friend

151.5 and 423.7.

I'm happy to report that radiation therapy is going well. There are 37 total treatments in the plan. The first 25 of those include the pelvic lymph nodes and the prostate bed. The final 12 treat just the prostate bed. Today was dose #25.

5 days per week I get up and start drinking water. I drink 20 oz between 7:15AM and 8:00AM, plus another 4 to 10 ounces by 8:15AM. This gets my bladder nice and full in time for my 9:00AM radiation treatment. Having the bladder full lifts the bladder and also the colon up and away from the prostate bed, reducing the risk of radiation damage to these structures.

I have a 45-minute drive to town for treatment. I hit the door at about 5 minutes before 9AM. I check in, get dressed in a gown plus a robe, and wait my turn. Within a few minutes I get called back where I jump on the table. The radiation technologists (truly awesome people!) position the "cradle" (blue in the photo) under my legs to immobilize them, then scoot me side to side until the lasers line up perfectly with my three targeting tattoos. When all is properly aligned, they slide me in for a CT scan with 151.5 seconds of exposure. The scan is compared to my targeting scan to ensure the best possible alignment. Once this is done, they recheck alignment and slide me back in for 423.7 seconds of radiation. At the end of each treatment I hustle to the nearest bathroom to let off the pressure of the full bladder.

Starting tomorrow, that second duration should be considerably shorter.

Side effects have been pretty good, but not ideal. I've had a couple of instances of intestinal bleeding on 11 May and 17 May. As a result, I'm slated for a colonoscopy this Wednesday 25 May. I'm bummed that I have to do that on a radiation day, but it is what it is. I'm also bummed that I had to have a root canal this past Thursday, but it is what it is. Props to my dentist for making that root canal no big deal. I'm starting to get used to having some pretty busy days.

And today was one of those busy days, with 5 activities at Carle this morning, taking almost 3 hours. First was my standard radiation treatment. Second was my weekly visit with my radiation oncologist. He's satisfied with my progress. After that came a visit with my medical oncologist. He's also OK with how things are going. He'll be more involved once the radiation is done. Next came 2 injections ordered by the medical oncologist. The first of those was another shot of Lupron to keep my testosterone level at zero for another three months; the plan is to stay on Lupron for a total of 2 years. New this time was a shot of Xgeva, an anti-osteoporosis med necessitated by the bone-thinning effects of the Lupron. Last came a blood draw to check the calcium level in my blood. I'm glad most treatment days aren't like this.

Yesterday I went for a bike ride with my wingman, Mark, who has helped me maintain my sanity throughout this entire ordeal. It was a beautiful day, and I had to comment that, despite the cancer and the treatments, I'm not suffering. It's a big emotional burden, which keeps my stress level up. But really, I'm not in pain, and I'm not debilitated. Life is pretty good.

Moving Right Along

Well, Targeting Tuesday didn't go as planned.

On that Tuesday they didn't like the way my colon rested in my abdomen, so we postponed the effort and tried again on Wednesday. Nothing had changed by Wednesday, so they put it off for a week and tried again the following Wednesday.

Still nothing had changed, but they decided that what they had was reproducible, so they could make their plan based on that.

They made a mold of my lower half by having me rest on a beanbag cushion which was initially pliable. Once I was fully settled, they sucked the air out of the cushion and it became rigid. I'll rest my lower half on that for each treatment so that I'm always in the same position. The machine shines lasers at the patient, and they marked where the lasers hit by placing a small tattoo on each hip, plus one in the center of the targeting area. When I hop up on the table for treatment they'll scoot me around on the table until the lasers land on those tattoo dots.

I was told that it would take 2 weeks to make the plan. Today is Tuesday, and that would have the plan ready tomorrow. I was expecting a call this week to ask me to come in starting Monday for treatments. Instead, I got a call yesterday afternoon asking if I could come in this afternoon. I've been eager for this to get underway, so my first radiation treatment is scheduled for 3PM today, 113 days after surgery.

There will be 37 total treatments, 5 days per week for almost 8 weeks. The first 25 treatments will hit the prostate bed plus the pelvic lymph nodes. The final 12 will hit just the prostate bed.

A complication in all of this is that in June I'm scheduled to go on a school tour to Europe that has been two years in the planning. The trip leaves on June 9. With 37 treatments starting today, and a holiday for Memorial Day at the end of May, my current schedule has me receiving my last treatment at 9AM on the day that we leave for Europe.

At one point it looked like I might have a full week of treatments remaining after our return from Europe, and the radiation oncologist was OK with me having a 12-day break before finishing. Now that there's just 1 treatment of overlap, I'll have to see how he wants to deal with it.

I have a theory that a perfectly-timed spider bite during treatment could leave me with superpowers when I get up off the table. I'll post here if I can make that work.

Targeting Tuesday

It's been almost a month since I wrote my last post. At that time I was looking forward to my appointment with the medical oncologist. However, that visit was a bit of an anticlimax. The oncologist laid out a plan that was pretty much what I already expected.

He'll take over my hormone treatment. My initial injection was good for 4 months, which takes me to the end of May. That's good timing, because that should be when the radiation treatments end, and that's when he wants to see me next. He's going to switch me to 3-month injections, because he'd like to see me every three months. He also plans to add another drug that will address the risk of bone loss (osteoporosis) associated with the hormone treatment. I believe he also plans to check my PSA again at the May visit. It should be no higher than the end-of-January readings, with the hormone treatment and radiation treatment working together to kill the last of the cancer. Here's hoping.

I don't have to wait much longer for the cancer-related activity level to jump. This coming Tuesday I'll have my "radiation simulation". This is really a targeting session. I believe the protocol is for me to drink some radioactive stuff, and also have some radioactive stuff injected. Then they'll do a CT scan to get a complete mapping of where my blood vessels and digestive tract are located internally. During the radiation treatments they'll want to avoid irradiating any part of my digestive tract.

And because of the positive lymph node after surgery, they need to map out my blood vessels. As explained to me by the radiation oncologist, lymph nodes are located in close proximity to blood vessels. They can't really image the lymph nodes, but if they know where the blood vessels are, then they can irradiate around the blood vessels at a distance of just a few millimeters. This will ensure that the lymph nodes get their rads.

After the imaging we'll do the actual simulation of the radiation treatment. When they're sure everything is properly aligned, they'll apply a few small tattoos for guidance during the live sessions.

After Targeting Tuesday, I'll head to southern Illinois Thursday evening for Easter weekend. When I return, it should be time to start radiation.

Back In The Swing Of Things

I'm growing impatient waiting for the radiation treatments to begin.

Today marks 3-weeks since I got my shot of Lupron, and my testosterone level should be near zero for the remainder of 4 months. I'll be re-dosed at that time, and I currently expect the hormone treatment to continue for at least a few years.

So far, so good! Side effects are slight enough that I'm not even sure I'm feeling any.

I've got my exercise mojo back now, and that feels good. I didn't have any real trouble running, and I'm back up to doing a 5-mile run in just over 45 minutes. I'll push the pace a little further, but I'm happy with where I'm at. I also have been back in the pool, and it took no time at all to get my wind back. For my YMCA Survivor challenge the past two weeks I've done a single 5-mile run paired with two 2000-yard swims (netting a whopping 550 Survivor points for the week).

I've also returned to Tae Kwon Do, which I'm currently doing 3 nights per week, 2 of those teaching, and 1 as a student. I'm back up to about 4.5 hours per week of Tae Kwon Do. Throw in a few dog walks with TKD and the above, and I'm back to between 7 and 10 hours per week of activity, burning 4K to 5K Calories. If I can maintain this level of exercise throughout the hormone treatment and the radiation treatments coming in April and May, then I should be able to minimize any side effects.

On Monday I'll meet the medical oncologist to see what he can tell me about my condition and my treatments. I'm not quite sure what to expect from him, but I'm looking forward to learning something new.

Little enough is going on now in my fight against PC that I'm growing impatient waiting for the radiation treatments to begin. I feel like I'm ready, but I have another 6 weeks to wait. All for the good, though, because the family will gather for Easter at the end of March, and radiation therapy will begin the following week.

Angst And Hormones

I can be a bit grumpy.  I'm full of angst, and hormones.

-- Nicholas Hoult (1989-), English actor, interview in The Mirror, 2 February 2012


I find myself dosed with hormones, but not so full of angst.

On Friday 29 January I travelled to Northwestern to see my surgeon, Dr William Catalona, for my post-surgery follow-up. It turned out to be a hectic day as I spent 3 hours there. I signed up for all of Dr Catalona's research studies and I had 3 vials of blood drawn. This included a PSA test (just 2 days since my last check), and the result came back as 0.03ng/mL -- welcome confirmation that my PSA is "undetectable", well below the 0.10 threshold.

A big part of the appointment was ensuring that I have recovered well from my surgery (I have). I'm now cleared to resume activities that I'm comfortable with. I'll get back into running and swimming forthwith, and will work my way back into Tae Kwon Do.

Another part was introducing me to the direct-injection treatment that is meant to relieve the ED side effects of the surgery. That part went as well as could be expected. I'll continue this treatment at home 2 to 3 times per week for the next 18 months, or until it is no longer necessary.

But for me the most important part of the appointment was discussing my on-going treatment, and getting started on Hormone Therapy (HT). In this case, the HT is Androgen Deprivation Therapy (ADT). It starts with a 30mg shot of Lupron, which is meant to shut down my body's production of testosterone for 4 months. This treatment will be repeated to maintain the ADT for at least a few years.

Lupron, when it first kicks in, actually causes a "testosterone flare", a spike in testosterone production. Over a period of about a week the flare subsides to pre-treatment levels; at three weeks after treatment my testosterone level should drop to near zero. To counteract the flare, I'm spending 10 days taking Casodex (bicalutamide), which blocks the uptake of testosterone.

I've been concerned about the side effects of ADT. Right now I'm at the peak of the "flare" period, so it's too early to tell. But I'm optimistic that side effects will be minimal. I understand that exercise is the best way to counter these effects. I'm signed up for this year's YMCA Survivor "get-in-shape" program, and this is the second week. After work today I'll go for a 3-mile (or thereabouts) run on a treadmill. I hope to work my way back up to the 5-mile runs I did 3 times per week when I was preparing for the 2014 Illinois Half Marathon. My near-term goal is a 5K run in May; longer term, I'm shooting for my first marathon in Spring 2017.

Yesterday Was A Good News Day

When I hit this detour, I started at a sprint.

For six weeks I went to a bunch of medical appointments, and did a ton of research. The biggest chore was just lining up the appointments, and dashing from one to the next. I regularly had two or three appointments per week. I brought a notebook to all my appointments (which I'm still using) to take notes, so I wouldn't lose the information I was being given.

It wasn't until I missed my first surgery date that I finally had time to catch my breath. And now I've had weeks of recovery time. There have been milestones along the way, but I haven't had to dedicate as many brain cycles to the cause. Lately, the pace has picked up a bit, as I research the use of Hormone Therapy (HT) combined with Radiation Therapy (RT) after Radical Prostatectomy (RP).

Yesterday was an important day - Day 30 after surgery. I got my first PSA test done, and the result was an awesome 0.04ng/mL. Any value  less than 0.10 is considered "undetectable", and achieving this low a PSA level is the goal of surgery. Mission accomplished.

Tomorrow is an important day. I drive to Chicago for my post-surgery follow-up. The recovery has gone well, so I don't expect any surprises. And tomorrow I'll get my first hormone treatment.

Yesterday I also met with the Radiation Oncologist who will manage my radiation treatments in April and May. We had a very reassuring discussion about the technology and treatment. This guy sounds like he knows his stuff, and he should be easy to work with. He also set me up with a consultation with a Medical Oncologist, where I expect to get an overview of where I stand, and all the treatment options that are available and appropriate.

Seatbelt fastened; I know it's going to be a bumpy ride.

Back To Work

I'm glad to be getting back to work (as a software developer for the University of Illinois) next week.

I'm in limbo in a way that I did not anticipate, since I'll have to return to work with the cancer still present. I hope to be cleared to return to Tae Kwon Do at my end-of-January appointment with my surgeon.

Research over the past week or so has reassured me regarding the proposed follow-up treatment. That treatment is expected to be 4 months of hormones starting in February, with 6 to 7 weeks of radiation starting in April. A PSA test I have scheduled for the last week in January will tell me more.

The Journey Continues

My recovery during the current week has been steady, and I'm feeling much better.

On Wednesday of this week, 9 days after surgery, I had my catheter removed, so I'm no longer hooked up to a bag like the one pictured. That did a lot to make me feel more human. I don't have to carry the bag around anymore, and I can now take showers without that thing at my feet. It also means that I can now drive my car again, and I'm glad of that.

On Monday evening I got a call from my surgeon with the results of the pathology report on my excised tissue. Although the news was all good right after surgery, it's clear that my detour is not yet over. The report shows extracapsular extension, one positive margin, and one positive lymph node of 12 that were examined. Together, these findings indicate that I need further treatment to eliminate the cancer.

The way forward, subject to second opinions and further research, appears to be four months of hormone therapy to deprive any remaining prostate cells of the androgen they require to grow and reproduce. The hormone therapy should start at the end of January. After two months I'll be halfway through the hormone treatment, at which point I'll start radiation treatments for five days each week for six to seven weeks. The calendar tells me that this radiation treatment will be during April and May of 2016. Fortunately, I'm young and healthy; I remain hopeful that side effects during this period will be manageable.

I have my 1-month follow-up appointment with my surgeon on Friday 29 January, at which point I'll learn more about my future treatment. I'll keep you posted.

Surgery Was Monday

Surgery was Monday and it went very well.

I spent Sunday night (12/27/15) at a hotel across the street from the hospital so that I could arrive bright and early at the hospital at 7AM for my 9AM surgery. I had spent all of Christmas Eve baking Christmas cookies, and I had a tin of cookies with me for the surgical team. There was nothing remarkable about the prep for the surgery. Everyone was very professional and very good at their job. They gave me something "to help me relax", and then it was time for me to wake up in the recovery room.

The surgery itself took 4 hours. Waking up wasn't much fun, but as soon as I was alert they were able to provide effective pain meds. I spent a couple of hours in recovery, and then waited another couple of hours in recovery for a room to be ready for me.

When I made it to my room, three of my daughters were waiting for me. It was good to see them, though I was still groggy.  Even though it was the same day as surgery, the nurses helped me out of bed and had me walk once around the hospital floor, just to get me moving again.

Some of my visitors left soon after for the long drive (3+ hours, in bad weather) back to Bement, IL. My oldest and youngest daughters stuck around a little longer, long enough to be there when the surgeon stopped in to check on me. He gave me some of the details of the surgery, remarking both that the lymph nodes removed during surgery were not visibly affected my cancer, and that the prostate itself looked healthier than he had anticipated, based on the biopsy report. He did tell me that he got one of the Christmas cookies that I brought with me that morning.

Unfortunately, Bement picked up several inches of rain on Monday. I didn't know about it at the time, but when Alyssa, my 17-year-old daughter, got to the house (by herself), she found a few inches of water in the basement, and the pilot light out on the furnace. Sadly, she was stuck with quite a mess at a very inopportune time. I'm proud of the way she handled the cleanup.

Tuesday I was on my own in Chicago, and I managed enough laps around the hospital floor (13) to complete one mile. Pain management was very effective, and I have no complaints.

Wednesday morning I confirmed that I would be released that afternoon. I got lots of instructions on taking care of myself. The bandage over the incision and the drain tube were removed. And then I got to take a shower. That made me feel a lot better.

My friend Mark and my oldest daughter Tia drove up that day to pick me up and bring me home. The drive was uneventful, and I was home by 7PM.