One Guy's Dance With Cancer

Gosh, I didn’t realize that I hadn’t posted anything here in such a long time. Dr. Pyne tells me she has another patient considering proton therapy as one of his options. Wants to give him this blog to look at. That prodded me to do an update on this gorgeous Saturday.

I will be three years post-treatment at the end of this July. I feel great, the numbers are fantastic and, if I had it all to do over again, I’d go back to Florida Proton tomorrow.

Since the last update two years ago, I’ve continued to have blood work done every three months. What they say, about the PSA levels fluctuating, proved to be true for me in the first two years post-treatment. Since then it has settled down and has been pretty consistent. The last two were 0.2 in November 2010 and 0.3 in February 2011. Just where they should be! At the last exam there were no bumps or masses. Exactly what you want to hear.

I have only one complaint. The protons somehow didn’t do a thing for this extra thirty five pounds I’ve been carrying around! I’d swear that was part of the “Proton Warranty”…

Wasn’t it?

Oh, perhaps not…

Drat…

I had the latest set of lab tests two weeks ago and got the results this week.  PSA was 0.5, which is up a tenth but nothing to worry about.  They told me that the PSA would probably fluctuate for up to 18 months.  Even at 0.5 it is way down, and very quickly, so no complaints.

The testosterone this time was at 601 vs. the 278 that it was at the end of treatments in July.  I’m not sure if that is a cause for concern or not as I don’t understand how testosterone affects the whole process after treatment.  However it is one of the three things, (PSA, Free PSA, Testosterone), they say I should know and track though, so it must be of some significance.  I’ll have to check into it.

Went back to Florida Proton this week for my 6 month follow up.  It was great to see my ‘family’ of people there who took care of me and to catch up with some of the other patients who were there when I was.  Dr. Henderson told me that everything looks good.  He said that the lumps he had felt before treatment are now completely gone and there is no sign of the cancer.  Praise God!

Got some great news the other day!  Another big THANK YOU to Florida Proton…

I had my 3-month PSA check at the end of October.  It took a while to get the results, but they were worth waiting for.  The PSA, (Prostate Specific Antigen – the test that the doctors track as an indicator of potential cancer), at the start of treatment was 4.2.  When treatment was over at the end of July, it was down to 1.8.

The new number, as of late October, is 0.4!  That is great news and continues the trend that we want to see.  The lower the better and anything below 0.2 is considered to be “undetectable”.  Ideally, that’s where we want it to go and to stay.  Bottom line, this is a good indication that not only are the cancerous cells within the prostate are dead or dying, but that it is also quite unlikely that any of the cells escaped my prostate enroute to other areas of my body.

A PSA level of 0.4 is darn close to CNED, (Chemical Non-Evidence of Disease).  CNED is one of the things that are looked for in determining whether one has achieved a “cure”.  BNED, (Biological …), is the other and it is used to refer to the objective findings when the doctor physically examines the prostate during post-treatment checkups. (No lumps, bumps, enlargement, etc.)   I’ll have PSA checks every three months for at least the first year and physical checks every six months for at least five years and more likely ten years.  All of the statistics, (I think this is correct…), relative to the word “cure” are based on CNED and BNED at the five and ten year marks.

I AM DONE! YAHOO!!!

Had my last treatment yesterday… Now I’m depressed… and that’s a good thing!

It’s a strange feeling that I have…

I don’t have anywhere to go tomorrow.

Please don’t misunderstand, I’m going home tomorrow and I can’t wait to see my wife/best friend/girlfriend of 33 years. I can’t wait to see my kids and grandkids.

But I don’t have anywhere to go tomorrow…

They say it takes 21 days to create a habit. I’ve been here for 59 days focused on one thing. Going to treatments and getting better.

I have a habit!!!

I get up in the morning, have breakfast, clean up, go to the proton center and wait for my time while talking to my friends, (other guys in treatment and their wives). Sooner or later Loren, Crystal, Whitney, Ramon, or Michael will come out and say, “You’re next, are you drinking your water? I’ll see you in about 20 minutes.” (I’ll explain the water in another post.)

Loren, Crystal, Whitney, and Ramon are my therapists. (Not to leave Monica out. She’s moved to a different part of the center to learn IMRT and IGRT, but she was there for the first couple of weeks so she’s family.) Michael is their assistant and jack of all trades. He’s family too.

“Therapist” is their title. It doesn’t describe what they do. They take a semi-older guy who spent a year or more as an oncology nurse and who is scared and worried about dying of cancer, reassure him, joke with him, answer all of his questions, and then reassure him again. Oh, I forgot. They also make sure everything is exactly perfect, and then they shoot his cancer full of deadly protons. At the end of 59 days they aren’t therapists, they are part of my family.

I love them like my own kids. It is just as hard to leave them as it was to leave Anne and the kids when I left Texas two months ago to come here.

Now, perhaps, you can understand why I say THANK YOU to Florida Proton for the fact that I am depressed. Thank you for such empathy, professionalism, and care. I miss you guys already.

When you got the nasty news that you have prostate cancer, one of the pieces of information your doctor had was your Gleason Score. If you’ve never heard the term before you aren’t alone. I spent 20+ years in and around medicine in various capacities, but never heard it. Dr. Donald Gleason developed this method of grading prostate cancer back in 1974.

Your Gleason Score is actually the sum of two Gleason grades, the primary grade and the secondary grade. The minimum grade is 1 and the maximum grade is 5. Ergo, the minimum score is 2 and the maximum score is 10. The higher the score, the more advanced or more aggressive the cancer. Scores of 2, 3, or 4 are so rare as to be practically unheard of. A score of 5 is more common and the most common scores are 6, 7, & 8.

Gleason Grades

(This picture shows a drawing of the 5 grades that the pathologist uses in determining your Gleason Score.)

Assuming that the biopsy was good and provides an adequate number of mapped cores, (where in the prostate they came from), the pathologist looks at the slides and determines how many include cancer and where the cancer is. She/he then classifies, or “grades”, the cell structure in the majority (>50%)of the cancer observed. That becomes the Primary Gleason grade. Then, the pathologist grades the cells in the rest of the cancer and assigns the Secondary Gleason grade.

Similar view with pictures of actual slides.

(Similar view, but including some pictures of actual pathology slides. You can look at the slide pictures and get an idea of how the pathologist does the grading.)

The Gleason score is then written as the sum of the two most prominent, or dominant, Gleason grades. (So a Gleason score of 2+3=5 has a primary grade of 2 and a secondary grade of 3). A score of 4+3=7 means that a poorly differentiated component (pattern 4) is dominant. If 95% or more of the tumor is composed of one pattern, the corresponding number is counted twice; thus, a wholly moderately-differentiated tumor would be scored 3+3=6.

In other words, not all scores are equal. A score 7 from 3+4 is better than one from 4+3. After having it reviewed by three different pathologists, they all agreed that mine was 3 + 3 = 6.

NOTE: There’sis an important clue… Get second and third opinions on everything!

I had always thought it did. I thought that the radiation went in there and ‘zapped’ the cancer and everything around it. I never really thought it through, but I guess in the back of my mind I figured that’s why people got sicker for a time while they were being treated.

Silly me! And that from a guy with a lot of time in the medical field including about a year as an oncology nurse. Guess I never asked… Well, now it is more important to me I suppose. In my research, I read a few things that made me question my assumptions so I had to get the right scoop before I put the information out in this blog.

I checked with Whitney and Ramon, a couple of my therapists, and then asked my doctor a few more questions.  Here is my understanding as of now.  Radiation, whether the standard photon radiation or the proton radiation that I’ve been receiving, does not “zap” the cancer. It surely could if enough was given, but then I probably wouldn’t survive the treatment (which, from my perspective, seems somewhat counterproductive!).  As Whitney put it, “If we could take your prostate and put it right there on the table, we’d just give it 8,000 Grey, (a measurement of radiation), and be done with it. The problem is you couldn’t tolerate it and that’s why we give fractionated doses each day.”

Now, I know that a lot of you are going to be saying, “Well, DUH!!!”, but another thing I didn’t really know is that cancer cells are not different cells that somehow got into my body. Instead they are my own cells that have somehow gone haywire. Life is all about reproduction, right? We reproduce ourselves by having kids and cells reproduce themselves by dividing, (mitosis). Sometimes, something goes wrong in the mitotic cycle and cells begin to reproduce more rapidly and some eventually get out of control. When cell reproduction is out of control it happens faster and faster and cells don’t get a chance to mature. As this goes on, you can wind up with a tumor. That, in a horribly oversimplified way, is what we call cancer.

Radiation, in the dosages they give, damages the DNA of the cells in the target area. In my case the target area is my prostate. All of it, cancerous and healthy cells. As the cells try to divide, because the DNA is damaged and it does not replicate for division, the cells cannot divide. Instead they die. Over time, all of the cancer cells die off and the cancer is gone.

So, “Why”, you ask, “doesn’t everything else touched by the radiation die too?” Well, Grasshopper, that’s a great question! (I asked the very same question.)

When a ‘target’ is irradiated the cancerous cells and the normal tissue receive the same dose of radiation. There really isn’t any way around that because you want to be sure and get to ALL of the cancer cells. In doing so you’re going to hit some normal tissue along the way. The radiation affects all cells hit in the same way. It damages their DNA. The difference is that normal tissue has a much better ability to repair the damage than the cancer cells which have almost no ability to do so. Since the cancer cells, by definition, are trying to divide much more quickly than normal cells, they are not able to repair the damage and so they die off. When I asked why the cancer cells can’t repair themselves, the doctor I was talking to put it this way, “Cancerous cells are not like normal cells. They are basically defective and can’t do what normal cells can.”

Your Gleason score is, “a fundamental determinant of disease biology and prognosis.” That is from a very good article at http://www.prostate-cancer.org. In English, it means that the Gleason is one of the main tools they have for figuring out how serious and how aggressive your particular cancer is. It can have a large impact on the types of treatment that you are a candidate for.

The quality of your Gleason score is dependent on two things. The quality of the biopsy done by your urologist and the quality of the preparation and reading of the pathology slides by the pathologist.

First, the urologist. I think it goes without saying that the doctor should be board-certified in urology. I would want to go to someone who has done at least hundreds of biopsies and preferably thousands.

The first biopsy I had done five years ago was VERY painful. That does not have to be the case and I suggest that you confirm in advance that your doctor will use a local anesthetic in your prostate. The biopsy I had done this time was much less uncomfortable.

How many sites should the urologist take biopsy “cores” from in your prostate? (They are called “cores” because the doctor takes them using a hollow needle.) In the not too distant past, it was fairly common for a prostate biopsy to consist of four or six cores. Particularly in a guy with an enlarged prostate, it simply is not enough!  It is one reason so many cases of cancer were either missed or under-diagnosed. I’m not able to find anything which definitively says that there should be “X” number of cores taken, but I think it is safe to say that the standard of care has become at least twelve cores. Each core should be placed in an individual container and mapped to show it’s location in the prostate. I’ve even heard lately of patients who have had 24-core biopsies. Safe to say that the standard is evolving. You would be wise to ask your doctor how many he or she will use.

Never forget! It’s your body, your decision. Be sure you understand what your doctor is suggesting and that you agree. Ask questions!

Second, the pathologist. Your Gleason Score is one way of grading the aggressiveness of your particular tumor(s). The Gleason Score is determined by a pathologist viewing your biopsy specimens. Because this is a critical issue for you, you want to have your biopsy examined specifically by a prostate cancer pathology expert who has done thousands of them. Just as it is a good idea to get a second opinion from another doctor on your diagnosis, it is a good idea to have your pathology slides examined by a second pathology expert. It is very common and expected. I actually had my slides examined by three different pathologists, all experts in prostate cancer.  When they each came to the identical conclusion, I was pretty comfortable that we knew what we were dealing with.

In the next post, I’ll try to explain what the Gleason score is and how it is arrived at.

Josh came for another visit. Just dropped him at the airport to go back home. We had a pretty lazy weekend which was just what I needed.

He got in about 4:30 Friday and we went back to the place, dropped off his stuff, & swam for a while. A little later, we went over to the Baseball Grounds to watch the Suns play. They got in a half-inning before the heavens opened up. The game was suspended and the tarps were put back on the field. Our seats were under cover, sort of, so we didn’t get completely soaked. Long story short, we waited around for a little over an hour and then gave up. We got our rain-checks as we left and later heard that it was declared a rain-out.

Saturday we had breakfast at Crackerbarrel and went to the beach. We came back in time to watch a HUGE thunderstorm and wonder if we were going to get rained out again at the ball game. Turned out that the game started a bit late due to the storm, but we got to see it after all and it turned out to be a pretty good game. There were some very nice plays made and the Jacksonville Suns won.

Sunday I was pretty wiped out so we lazed around in and out of the pool until Josh had to get back to the airport. Man! It’s tough being sick…

Ashley was here last week. She came in on Sunday the 29th and went home on the last flight out Tuesday night. We had a great time and I think she may have worn out her camera! We were all over the place and the highlights were probably the beach and the Cancer Survivors’ Park.

She came with me to my treatment appointment on Monday and got quite a few pictures. Even took a video or two in the room while they were getting me into position. I’ll figure out how to post a video on here and then put one of them up.

We had quite an interesting experience while at the beach. We were walking around to various stores so that Ashley could do a bit of shopping. We had heard that there was a good chance for thunderstorms in the afternoon. Sure enough, it began to look stormy up to the north of us. The clouds were starting to build an look pretty dark, but were a long way off. She saw a dress that she liked in one of the shop windows so we went in.

I assumed ‘the position’ appropriate to any male on a shopping trip. (There was a man-chair right near the register.) I waited while Ashley went back and tried her dress on. It was apparently a successful trial as she came out and bought it. Total time elapsed from walking in the door was only about 15 minutes or so.

I looked out the window and couldn’t believe that the storm clouds were already overhead! That son of a gun was moving as fast as any storm I’ve ever seen! It looked like this when we arrived…

Nice day at the beach

And like this 30 minutes later!! Look! Even the sunglasses have come off!

Needless to say, we hot-footed it back to the truck just in time to take our place in the middle of the traffic jam going back to town!

Changing fast!

Why are protons so much more precise? (My understanding)

I’m comparing proton radiation with conventional, (photon or xray), radiation. I’ve also seen some literature about carbon radiation, but have not had a chance to research it and know too little about it to comment here.

Protons are more precise primarily because they are “particles”. Conventional radiation uses “waves”. Waves of energy move through human tissue and cannot be stopped. On the other hand, protons can be “stopped” by firing them into tissue of known density at a speed that will cause them to slow down and stop at a precise point. Beyond that, protons do not give off much of their energy until they stop. Then, they give it all up in a hurry. On the other hand photons, (conventional radiation), give up most of their energy as soon as they encounter human tissue. Then they keep right on going and exit out the other side. See the graph below.

Pretend that the “Depth in Water” is the “Depth in your Body”. It’s close enough to make the point. Imagine that the Y-axis represents your skin where the radiation enters your body. As you go further to the right on the X-axis, you are moving deeper into your body.

The first curve you see is the photons or conventional radiation. Note that they give up most of their energy, (read – ‘radiate the tissue’), within the first two centimeters of entering your body. Then, they continue doing so at a lesser and lesser level all the way through your tissue until they finally exit the other side.

The next four curves represent protons. Note that they give off very little of their energy, or radiation, until they get to their programmed depth and then they ‘explode’ and die. Note especially that they are not going out your back. The way the doctors and physicists cover the whole target is to ‘laminate’ or ‘stack’ the proton beams so that they each stop at the appropriate depth to cover the entire target.

There are a couple of terms here that are used in the profession. “Entry Dose” and “Exit Dose”.

Note that with conventional radiation, there is a huge entry dose and that is probably not where the target is. Then the energy is largely dissipated before ever reaching the target and it keeps on giving off radiation or energy until it passes out of your body. That’s the exit dose.

With the protons there is an entry dose, but it is very low by comparison. As the protons get close to their target and begin to slow, you can see that they very rapidly give up all of their energy and then die. They do not keep going out the other side of your body. No exit dose at all.

That means that the explosion of energy or radiation is concentrated on the target. In this case, the target is your cancer. Because of those curves, known as Bragg Peaks, you can see that they are able to concentrate much higher doses of radiation right on the target without affecting nearby tissues.

Kill, Fang, Kill!!!