Sunday, July 14, 2024

Soaking Up Some Rays

The first two sessions of SBRT are complete. From my perspective it's the easiest thing in the world. I walk into a room, lay down on a table, slide into a machine, and get my dose of radiation. Due to the location of the target I don't even have to take my clothes off, I just pull up my shirt. It's absolutely painless and the machine barely makes any noise at all. Fifteen minutes later I'm on my way home. 

But then there's this...  I know what that machine does and a little bit about how it works. I know that when it's running there are high energy photons passing through my body and damaging everything they hit. The target is like the axle of a wheel. The beam moves around the target, blasting it from multiple positions so that the non-target areas never get the full dose of photons while the target does. The plan is to kill off the bad cells and spare the good cells. But if I move even a fraction of an inch while I'm in that machine, does any part of the invisible beam miss the target and hit healthy cells? How good was the targeting in the first place? How can you not think of this thing as a "death ray?" If you let your mind run away with itself some creepiness can sneak in. Cold. Industrial. Remote. Ominous. Best not to linger on these thoughts. Gotta have some faith in the system. 

There is one small technical thing that bothers me. In the treatment room there are warning lights, one red and one green. When the machine is off (not emitting radiation) the red light is lit and says "beam not on." When everyone leaves the room and you're on the table, the green light comes on and says "beam on." Why? I'm the guy on the table. It doesn't mean anything to me. I expect to get blasted and I don't move until someone comes into the room and says the session is over. But if I worked in that room all day I'd want to know that the beam is off when I'm in there. A red light universally signals danger. I brought this up to one the radiation techs. She said that the warning lights outside of the door are the opposite. If there is a red light they don't go into the room (I'm going to guess that there are safety interlocks on the doors anyway). Is there any logic to explain this? Is it possible that the people who installed the lights mixed them up? Stay tuned...

Sunday, June 30, 2024

Confirmation And Schedule

As planned, I met with my radiation oncologist on June 27, discussed the details and the risks of the procedure, and signed the consent form. Twenty minutes later I went through the set up process on a specialized CT machine and got a couple of new tattoos for alignment purposes. The treatment dates are set (July 11, 12, 16, 17, 18). Now the game is to stay healthy and positive for the next 3 weeks. I'm in the groove and ready for it. Everything is good.

Wednesday, June 26, 2024

The Medical Oncologist Weighs In On The Treatment Plan

Yesterday I had a meeting with my medical oncologist to talk about the role of drugs in the treatment of prostate cancer. You can spend all the time you want reading peer reviewed research papers and listening to smart and accomplished people working in the PC world (and you should), but there is nothing like a face to face with a doctor who knows you. There are two big takeaways from our conversation. First, regarding treatment approaches, the doc said that there are a lot of data and a lot of protocols, but instead of applying them blindly it's better to form a plan for "the man in the room" based on that man's specific circumstances. Second, my desire to avoid androgen deprivation therapy (ADT) at this time is acceptable to him and he supports the treatment plan. He mentioned that newer technology like SBRT is showing tremendous value in individual cases, but it will take years to collect enough data to change the standard of care. I mentioned this in my book. Take survival statistics with a grain of salt, because to analyze something like  survival rates over ten years requires ten years worth of data. The best treatments for PC ten years ago have improved considerably. This is the same with many other cancers and diseases other than cancer. 

I feel good about the meeting because the doctor that I know and trust supports the plan, confirming that my choices are not mistakes. I also feel privileged to have such a solid team of doctors and healthcare professionals looking after me.

Wednesday, June 19, 2024

The Process Moves Forward; Consent and Set Up Session

I now have an appoint for June 27 to get the radiation treatment program started. At 10am I see the doc for a detailed explanation of the treatment and any Q&A. Then I sign the consent form, which I call the "death warrant." Pretty much every consent form ends with something like "up to and including death." It's good to read it because it may bring up a few more questions and the doc is right there to answer them. 

From there I head downstairs for the set up session, which includes a special type of CT scan designed to accurately locate the target. This will be the fourth time I've been through this and as I recall it's simple for me and non-invasive. Data gleaned from the scan is compatible with the planning software used by the doc, the physicists, and others. It's one big integrated system. I'm pretty sure the admin who handles scheduling is already working on treatment dates. I told her I wanted to start ASAP and prefer mid-morning. The actual treatment is five sessions with a day between sessions and the weekend off, so the whole thing is complete in less than two weeks. 

That's the nitty gritty, but underlying this is the fuzzy fear and anxiety about the whole damn thing. It's a lot of "what if?" questions. What if the cancer has already spread to other locations? Am I doomed? Can they be treated? What if my PSA continues to rise but the cancer can't be found? Will this treatment last, or will I be in trouble again by Thanksgiving? Does PC prove to be the assassin, emerging from the shady gang of other cancers? Is this going to fucking kill me? I could go on and on. I personally like to break it all down logically. I can do it my head, but making notes or writing about it can solidify things and help prevent backsliding to the fuzzy world. When I'm satisfied I compartmentalize it and just put it in a box. Fear and anxiety dissipate. I can re-visit the box whenever I need to, but it always goes back in the box. And no, I'm not talking about a literal paper box. This is a psychological technique.

Compartmentalization is a good way to maintain your physical and emotional health (which are completely intertwined) and to stay focused on the outcome that you want. I wrote about it in my book. You should take a look at it because it applies to many challenges you face in life.

Friday, June 14, 2024

Decision Made

My decision is to go forward with radiation treatment for the single lymph node that has been definitively invaded by prostate cancer. I'm hoping to get some additional information that will confirm the wisdom of this decision, but I don't want to wait too long and give the PC more time to spread. I contacted my radiation oncologist today using the hospital's internal messaging system. I hope to hear from them soon. Update: Heard from the doc last night. He answered some questions and will begin to setup the treatment.

Unrelated to PC: Today I saw an ophthalmologist who specializes in treating uveal melanoma. It's a rare form of malignant cancer that forms in the back of the eye and can be fatal. Patients who have a BAP1 mutation are especially susceptible to this disease as well as half a dozen other cancers. This single mutation is the reason I've had so many other cancers. I see this doctor annually and I'm happy to report that my eyes are normal. Great news! I'll take any win I can get.

 

Friday, May 31, 2024

Possible Strategies For Dealing With My Personal Prostate Cancer Challenge

I saw my radiation oncologist as planned and we discussed the likely scenarios as to how the PC spread. It's worth noting that the radiation treatment (5 sessions of SBRT) in late 2022 appears to have been very effective. There is no sign of PC in the area treated. This suggests that some PC cells left the gland prior to that treatment and lodged themselves elsewhere. They didn't show up on the scans from 2022 because there were likely very few cells that had migrated and thus they were below the detection limit of the scanner. Over time that small number can grow and the PC becomes evident.

Today the PC cells are visible in one para aortic lymph node, but that doesn't mean there are no other locations. They could be anywhere, but again, at too low of a number to detect.

We moved on to possible treatments. One option is androgen deprivation therapy (ADT). This blocks the production of testosterone, a hormone thought to support the PC growth. The benefit of this approach is that it is systemic and it would starve PC cells anywhere in the body. Unfortunately this treatment has extensive side effects including loss of bone density, loss of muscle mass, fatigue, and a complete lack of libido. I experienced this once for about 6 months and it was awful. Often this treatment stops working after a few years. So it can create a period of time when you are not growing any PC but your quality of life is diminished during that time. If/when the PC returns then you're off to some other therapy, maybe, or you succumb to the PC. 

Another option is more radiation therapy, and it breaks down to two approaches. The first is to blast the single lymph node known to be cancerous. This requires 5 sessions in the treatment machine. The second is to blast a whole group of nodes in the same area, the thought being that one or more of them may contain PC cells (too few to detect) so you blast them all with the hope of nipping it in the bud. This requires 28 sessions in the treatment machine. Side effects would be more pronounced than the single lymph node approach. With either approach, it's possible that there are PC cells elsewhere in the body so the radiation therapy may simply fail. It may be possible to switch to ADT at that time but it's not clear if that would be effective. 

My next step is to meet with the medical oncologist who would be handling the ADT therapy and get his views on this. And finally, I need to check with two different surgeons who have treated me for mesothelioma (chest and abdomen) and see if there are any conflicts with the proposed PC treatments. I have to watch my back on this. Given the long history of cancer and treatments and the damage some of them has done, I can't assume that everything is compatible when in fact there may be a conflict that is counterproductive. 

This is the information I have to inform making a decision. There are a lot of unknowns. 


 

Monday, May 27, 2024

Prostate Cancer Problem

PC is yet another problem that won't go away. Since I last posted about this I've spoken with my radiation oncology nurse and received some clarification of what the imaging test shows. I previously mentioned that there was a troubling spot outside of the gland itself, but also that it has not changed in two years. That was an incorrect self interpretation. There is a new spot outside of the gland in what appears to be a para aortic lymph node. This almost certainly means that the PC has escaped from the prostate gland. This changes everything and reduces the number of potential treatments. I have an idea about where this is going and I'm not happy about it. I'll see the doctor on Wednesday to get the full story and the suggested course of action.