Treatment Round III

After 3 PET/CT scans (2 choline, one PSMA), 4 MRIs, 1 ultrasound, 5 PSA tests, visits to 2 two continents and both hemispheres, and discussions with 7 urologists/oncologists we finally have a plan. I will get a 3-month ADT injection this week (with a casodex flare blocker for a few weeks). This is a relatively banal treatment given all of the brain power and exotic tech applied to the problem in the last 3 months.

Dr. Kwon believes that there might be some cancer lurking in my lumbosacral plexus and/or sciatic nerve given some "blue dots" from the most recent PET scan and the sciatic numbness I have had in the last 2 ½ years when my testosterone level has been normal.  The plan is that we apply the ADT and then see if the blue dots disappear.  If so, we will have some confidence that we know where the cancer is located and consider the application of some more radiation "so that you don't need to spend the rest of your life on ADT".

I am very relieved to have a plan. Watching my cancer grow without taking action has been very difficult. It also meant I could not plan anything. Flying off to other states and countries was very disturbing to the other rhythms of my life. What I want most is to live my life as normally as possible. Almost impossible to do that while performing in a cancer forensic show the last 3 months.

More details...

• During this intensive cancer hunt my PSA went from .2 to almost 5. This is a 3 week doubling time: aggressive stuff.
• Although the cancer did not reveal itself on the scan plenty of other things did show up. This is the nature of looking inside a 61 year old body. The scans I have undergone in the last few years have disclosed MANY defects: a variety of benign cysts, degenerative arthritis, tendinosis, torn labrums on my hips, enchondroma in my femur, calcium in my aorta, a nodule in a lung, and only one functioning kidney. Things are not pretty in there. Outwardly though? I feel great! 

Adjusting

Soon after beginning my cancer journey I connected with a therapist who specializes in helping cancer patients. She has been a tremendous help to me. Talking to a wise soul who does not have any emotional attachment has been very helpful. She is awesome. One of the first things I related to her was my process for adjusting to stress. Although I have had a great life there has been plenty of stress. Having a good coping mechanism has helped. My process is quite simple. I imagine the worst possible outcome of the problem and then think about what life would be like in that situation. This works very well for me. When I consider the worst I realize that I can handle it. It might not be good but is always survivable.

The problem with this coping mechanism is that the fundamental principal is "I can live with anything". But the worst outcome of cancer is, of course, death. Imagining "life" when I am dead...well...it doesn't quite work. I needed a new way to find serenity. Like most of the cancer experience there is not one story for everybody. People find different ways to cope. I believe that most people pick either hope or avoidance. I have thought a lot about these two choices (they are not mutually exclusive).

Avoidance is often perceived negatively. When somebody is choosing to ignore a truth they are accused of avoiding reality. This is considered cowardly, irresponsible, or even self-destructive. This point of view suggests that avoidance is an effort to refuse a truth: to deny it. However, while avoidance and denial are similar, denial generally implies complete refusal to accept a truth. Avoidance simply implies ignoring it. Denying our cancer risks ignoring treatment: probably fatal.  Avoidance implies we are choosing not to think about cancer unless necessary. Humans use avoidance constantly. Our days are filled with avoiding some things in order to deal with other things.

In contrast to avoidance, hope seems to be the darling. Nobody disparages hope. This is not surprising given the western affinity to religious faith. Faith and hope are not the same but require some similiar skills: choosing to believe/ignore something without having data or facts to support it. A person espousing hope suggests that they are not avoiding anything...they are simply hoping for the best. A common mantra in cancer circles is that "we must have hope!". Curiously it can be argued that hope is more like denial than avoidance: hope is subtly denying the truth.

As mentioned it is not necessary to choose between these two coping mechanisms: most people probably use both.  Personally I struggle with finding acceptance through hope. This is probably due to a life of computers and statistics. My thoughts always go to the probabilities of the outcomes. It is very hard for me to be hopeful about a 15% probability.  Every part of my experience fights thinking about that hopefully. So my "go to" mechanism is avoidance.

I think many people believe that hope is the better option but there is reason to believe otherwise. Some studies have shown that persons who accept a bad experience more realistically develop better mechanisms for dealing with disappointments. I recently listened to a Vietnam POW describe his experience. The interviewer asked the veteran if he thought there were certain types of GIs who survived poorly as POWs. "That is easy", he said, "the optimists". Being realistic does not mean giving up on the most aggressive outcome. It simply means accepting that it might not be likely and accepting what comes. I am on the third round of cancer treatment. I understood the moment I saw my initial pathology report that my odds for surviving the disease were not good. I started learning to accept the most probable outcome on that day but I have never stopped fighting for my life.

More details...

• In my opinion most people are very uncomfortable interpreting data. Statistics is probably one of the least favored subjects in most people's education. This is unfortunate at this moment in history. We are deluged with data that is often summarized by journalists who are not comfortable with data and rarely provide enough background data. The effect is third parties without subject matter or statistical skills curating our information feeds. I was reading a great cancer blog recently. The author began with "...the median time was xx months...which means I would have xx months and then....". This is a common mistake.  People believe the average or median (most people do not appreciate the distinction but that is a future blog post) is the minimum expected. But that is NOT what it means.  It isn't even the likely outcome. It is the 50% mark. We are NOT likely to achieve the average/median.

Seeking Knowledge Down Under

As mentioned in an earlier post the latest plan was to get the best imaging in search of the cancer. Specifically, the goal was to get a PSMA PET scan, currently considered the best imaging technology for finding low levels of prostate cancer.  After an exhaustive search of sites in the U.S. (where this scan is currently only available via clinical trial) and Australia my wife and I picked an imaging center in Sydney, Australia. Australian imaging sites offer the test at a fraction of the US price and, more importantly, have short queues.  I needed results fast: Sydney fit the bill...and hey...we can visit Australia!  

14 hours later (non-stop from San Francisco) we arrived in Sydney. This was our first trip to Australia so we were excited to experience the world down under. Sydney was nice. Great climate (think California), pretty countryside (again...think California), very nice people (Canadians), clean city on the water (reminded me a little of Vancouver). Unfortunately Sydney was just that: a nice anglo city. Not very different.

Our medical experience was interesting. The imaging company was very efficient and I felt very well taken care of. They were well aware that I had flown half way around the world to visit them and wanted to make sure all went well. The experience was similar to a U.S. imaging lab but everything was a little less awe inspiring. The buildings in the little medical park were all reasonable but kind of shabby. Hospitals and clinics in the U.S. are often very nice: reflective of the obscene amounts of money we spend on medical care here. Visiting the Mayo clinic in Minnesota is like visiting Oz! Likewise, the often touted American "customer service" wasn't so evident. Surgery, MRIs, radiation machines, CT and PET scanning machines (wow...realizing how familiar I have become with that world) are often cold. In the U.S. we solve that by providing heated blankets to the patient. Not true down under. There were other examples of a less customer accommodating world but generally the experience was great. I would ascribe the differences to Australia's extra attention to cost: socialized medicine.

The PSMA PET scan was completed and I got my answer the same day: cannot find the cancer. This was disappointing but also a little reassuring: no evidence of bone metastasis yet. My PSA at the time of the test (2.1) was high enough to see the cancer if it was in a single (or a few) glob(s). The fact that it did not show on the scan suggests the cancer is scattered around (probably not practical to excise/radiate/freeze).

My plan at this point (no cancer found) was to return to the U.S. and immediately begin hormone (ADT) treatment. If I can't cure it I want to slow it down as soon as possible. Unfortunately, my point of view on urgency is not the same view held by my cancer team (see my post for more on this problem). I have 3 teams helping me: Mayo (primary team), UCSF (second opinion team), and Kaiser Permanente ("B" team). I have been trying to communicate with my Mayo "quarterback" since returning from Australia 10 days ago but he is unresponsive. I got some help from one of his teammates this week and discovered he is out of the office all next week. The Mayo team members are all deferring to my quarterback but the quarterback is AWOL!

I have also reached out to my UCSF team and am told I am on the "phone call list" for next week.  However, if the doctor calls and I don't pick up I miss my chance.

This is VERY frustrating. My team at Kaiser (the "B" team) are ready to give me a ADT shot when ready but I am not sure this is the best approach. I need Mayo and/or UCSF to respond!!!  Meanwhile my cancer is rising very quickly.  Every 3 weeks my PSA level is doubling. 

ARRRGGGG!!!!!!!

Not in control

An old friend of mine is a former Lutheran pastor and post graduate of the Yale divinity school. He once told me that the role of religion is to prevent people from believing we are gods. I've always felt that this is one of the best reasons I have heard for the value of religion. The human tendency toward grandiosity is one of our biggest problems. Unfortunately it seems like the more progress we make in science and technology the harder it is to resist this pull: we seem doomed to believe we are omniscient.

Accepting a life-threatening cancer diagnosis is a great way to get in touch with the humility that most of us should feel routinely (NOTE: there are easier ways to develop this skill!). However, it seems that, even in this most powerless of situations, we routinely take credit/blame for the progress of the disease.

This is reflected in so many of the reactions to cancer. For instance, a common suggestion is that the  cancer can be can beat it if we simply eat a particular food or by "detoxifying". Another response is for somebody to investigate why the cancer victim is responsible for the disease (what does she eat? did she take birth control? did he exercise enough?) 

The reality of cancer is that, with a few exceptions, there is nothing we could have done to prevent it (or at least, nothing we could have KNOWN to have done). There are a few known carcinogens that we know contribute to cancer (e.g., smoking and asbestos and coal for lung cancer) and a few foods that may have slight correlation but most cancers are simply bad luck. Bad genes or simply a bad branching in the natural (yes…natural) mutations which affect all creatures. It is estimated that by age 60 almost everybody has some form of cancer. Most simply never evolve to a disease that we diagnose. Depending on the data used it is estimated that 35-45% of people will be diagnosed with cancer in their lifetime.

We seem to act just as arrogantly on the credit side. One of our most basic responses to a cancer diagnosis is to assume that the victim can "fight" the cancer. "You are a fighter.  You can beat this".  The power is in our hands...we just need to fight harder! There are, of course, actions you can and should take to improve your odds of curing your disease: getting the best medical team, understanding your choices, taking medications, etc. In the end though, the outcome is largely out of our control. The cancer makes her¹ own decision.

This hubris is quite ridiculous. To assume that WE can fix the cancer supposes that if we don’t we were bad warriors. “Susan is in remission: she is a cancer slayer”. “Barney died: I guess he missed cancer slayer training”.

The credit that cancer survivors deserve is not the fact that they are cured. They merit credit because they endured the treatment or symptoms of the disease! Faced with the prospect of death they held it together and continued to be good parents, spouses, friends, family members and/or workers.  THAT is hard.

We are not in control of everything.

¹I’m tired of naming everything evil with a male pronoun.