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.

Urgent Matters

It has been 8 weeks since discovery of my rising PSA following treatment. I have had numerous tests and met with physicians from Mayo and UCSF.  Unfortunately my PSA is rising rapidly: < 1 month doubling time.  Last PSA: 1.1 (5x higher than 8 weeks ago). I have an aggressive cancer.

I am now working with Drs. Eugene Kwon and Brian Davis from the Mayo clinic.  These guys are at the forefront of a recent direction in prostate cancer fighting: ogliometastatic prostate cancer treatment.  Oligometastatic defines a stage in the cancer's growth: "The oligometastatic state has been proposed as an intermediate stage of cancer spread between localized disease and widespread metastases". The goal of this treatment is aggressive detection and attack of the remaining cancer before it has spread out of control.

I have also met with urological oncology at UCSF (Dr. Peter Carroll) for a second opinion.  

At this stage we know that my cancer is growing rapidly (as measured by the PSA) but we don't know where it is.  This is because the current imaging technology has a limited ability to see cancer in small quantities.  I had a PET choline scan and a pelvic MRI two weeks ago but the cancer was not visible on the scans.  There is a more accurate scan available called a PSMA PET which is only available via clinical trials in the U.S. and I have been scrambling to find a center to get the test.  Since the PSMA PET scan is still a clinical trial it is hard to find centers which offer it and insurance doesn't generally cover the cost.  The test is cheap and easy to schedule in Australia. I'm narrowing my search and hope my test is done by early next week.

If the PSMA PET scan finds something it might be possible to treat the disease.  The goal would be to prolong my life: a cure is very unlikely.  This approach is a long shot. There are no studies which support this approach (studies will be difficult given the ad-hoc nature of the treatment). If the imaging finds a suspicious spot it doesn't mean it is the only spot: it might be simply the most visible location. It could be scattered in around in other areas as well. So...IF we find a spot and IF it can be treated where found (additional radiation or surgery) and IF we get it all in the spot treated and IF that is the only spot then I can make progress against the disease.

Meanwhile my cancer is progressing. At this stage the mainstream approach is to begin hormone (aka ADT) treatment. ADT should "arrest" the disease for awhile. As I have mentioned in previous posts ADT is very effective. It does not last forever but it could extend my life for years. Studies have suggested that ADT is better at prolonging life if administered immediately upon PSA rising instead of waiting. I am anxious to begin ADT to extend my remaining life!

Time, therefore, is critical. I want to begin ADT immediately but if I begin now I will eliminate the ability to detect the disease (the ADT will quiesce the disease...making it impossible to see via imaging). So...wait longer and maybe find/attack the disease or play it safe and start ADT.  These are the decisions I am grappling with now and for the next couple of weeks.  

My Favorite Cancer

Most people understand that, while cancer is universally feared, there are some cancers that are more worrisome than others. Prostate cancer, on the other hand, is often perceived to be less fatal than many of the others.  This is true. While very common in men (1 of every 7 men will be diagnosed with prostate cancer), many of these men will be diagnosed later in life and experience cancer as a very slow growing malady.  Only 1 of 6 men diagnosed with this cancer will die of it and most of those will live many years after it is diagnosed. Some in the medical profession believe that treatment of  prostate cancer is often more akin to managing a chronic disease.  The survival data supports this. When including all stages of prostate cancer:

    The 5-year relative survival rate is 99%
    The 10-year relative survival rate is 98%
    The 15-year relative survival rate is 96%

Wow!  It is barely scary!

This perspective of prostate cancer is reassuring to men with the most common form of the disease: an indolent malady which must be treated and tolerated (with some disappointing side effects) but which is probably not life-threatening. For these guys the conversation is about how to avoid unnecessary treatment or at least avoid it as long as possible.  This was true for me as well when I first began my cancer journey. Death was not a concern. I assumed that, since it is slow growing, I would be warned of it's presence well before it would endanger me: "those guys that died of the disease were just unlucky: they weren't getting the best medical care...nobody told them soon enough of its arrival"

This perspective is particularly popular in recent years as medicine has taken a more statistical "big picture" view of prostate cancer outcomes.  If, as this narrative suggests, we are routinely over treating men because of false-positives perhaps we should stop doing the predictive testing.  Some studies suggest, as an example, that PSA testing does not lead to overall better outcomes for prostate cancer survival (some studies disagree).  I have a friend who recently asked his internist if he could have his PSA tested and the doctor strongly discouraged it.

The problem with this view of prostate cancer is that it is a discussion of the non-aggressive version of the disease.  The story is quite different for those of us with aggressive disease.  If not caught early enough aggressive disease metastasizes to distant parts of the body.  If a man has metastatic cancer his future looks quite different: "The relative 5-year survival rate for distant stage prostate cancer is about 29%".  Ouch.

This "mañana" view of the disease extends to the physicians as well. Urologists often view the urgency of prostate cancer in the context of the slow-growing disease. In a recent visit to a new urologist for a second opinion I was told we should wait for 3-4 months until the PSA was higher  and then get more imaging.  It was difficult to make the physician understand that the "doubling time" of my PSA (a measure of aggressiveness) warranted imaging within the next couple of weeks.  Waiting 3-4 months would have resulted in a 16x increase in my cancer.

Cancer still here

Sigh. New PSA test: no longer undetectable. My cancer is back or, more accurately, it never left. It would appear that the radiation treatment did not get the remaining cancer. When the effect of the hormone treatment wore off...my cancer showed itself again.

This is hard news.  There is still some hope for a cure but it is much less likely now.  I had never thought the probability of cure was high (maybe 50%?) because of my pathology but I was hoping for a lot more years.  Now the most likely future is years of hormone (ADT) treatment until it becomes ineffective and then fading away.

There are some hopeful paths: 

• Finding the remaining cancer and eliminating it. There are new imaging technologies that can find small amounts of cancer. My cancer amount is very small right now.  It might be too small to detect...but it will grow. If found it might be possible to radiate/excise the offending area. 
• New hormone treatments. As mentioned in an earlier post ADT is very effective at halting the cancer. Unfortunately in almost all men the cancer eventually finds a way with very minimal testosterone. At that point the cancer is referred to as "castrate resistant". There has been tremendous activity in the last few years to introduce new drugs to delay castrate resistance.
• Immunotherapy. There is great excitement, of course, in this area. So far the effectiveness in treating prostate cancer has been minimal. However, new stuff is coming out each year.

I have good teams on my side.  I am working with urologists and oncologists from Kaiser Permanente, UCSF, and Mayo to develop a strategy.

The news has put a new twist on my career.  Given my shortened lifespan do I want to continue to work?  Full time?  Part time?  Retire?  It is hard to think about stopping now.  I love my field and am at the top of my game.  On the other hand, a stressful job is not going to work now.  I want to enjoy the rest of my life.

More details...

• The team "castrate resistant" is used because historically there were no drugs to inhibit a man's testosterone production: the patient was actually castrated.  Glad those days are over :-)

Other trouble

Now that my radiation was complete I enjoyed a break from cancer.  A year passed with no new worries.  My PSA tests showed no detectable cancer.  This might have been a great break from the cancer but some new issues surfaced to keep me focused on my health.

The first was my heart.  As I was looking through the medical reports from my radiation treatment I discovered an alarming point.  During radiation the Mayo team was taking my vital signs each day before treatment.  My resting heart rate has historically been very low (sub 50) which was not surprising given my exercise level. In the 2nd week of radiation my heart rate suddenly shot up to 110+.  This continued each day until the end of the radiation.  I measured my rate 6 weeks after radiation ended: it was still high!

Having discovered the issue, I contacted my internist and started down a new path on my health tour: what is going on with my heart??   This led to a meeting with a cardiologist.  The cardiologist looked at my CT scan summary from a year earlier and noticed a comment about calcium in my pelvic aorta.  "We should get a heart scan to see if you have high calcium".  Sure enough, my calcium score was high and I was put on a statin.  This, however, had nothing to do with my high heart rate.  EKGs where done, a stress test, and finally a meeting with a heart rhythm expert.  I was diagnosed with paroxysmal atrial tachycardia.  I was put on medication for a few months, ablation was discussed.  In the end, at recommendation from rhythm cardiologist, we dropped the medication (which was not having an affect) and decided no further treatment was needed for now.  My resting heart rate has dropped into the 60-80 range.

As has been the pattern of my last few years...investigating one malady leads to concern over another.  In this case it was the heart scan.  The heart scan gave me a calcium score but it also found a "3 millimeter nodule on my lungs".  Ahhh!!!!  Stop!!!   This was discussed with the oncologist and internist.  "Not related to the cancer".  "Let's keep an eye on that...no reason to do anything yet."

About this time another issue arrived: a discomfort in my abdomen when I slept.  More visits to the doctors, another CT scan, a colonoscopy (incidental...it was due) but nothing found.  The discomfort is still there and now noticeable during waking hours.  I am hoping this is due to diet, stress, whatever....not something grimmer.

Slowly but surely my confidence in my body was disappearing. I started feeling hopeless. I was not the picture of health.  I was a mess!

More details...

• I cannot say why the team at Mayo failed to notice the alarming pulse increase. This is, in my opinion, one of several examples of how medicine has been ignoring a huge opportunity: applying artificial intelligence to medical data.  It is surprising that the Mayo staff could have missed this (why bother taking my vitals if you are not looking at the data?) but my assumption is that, for the team, each day was a new day.  Nobody was looking at the trend.  That is exactly the sort of thing machine learning would have caught (quickly).

• The cardiologist's discovery of the calcium in my aorta is another example of medicine's failure to use AI.  If I had not experienced the heart rate issue the cardiologist would never have seen the CT scan.  It was only quite incidental that he saw it at all.  I almost walked out of his office in my first visit when I mentioned the CT scan.  He asked to take a look and saw the aorta calcium observation. If an AI algorithm was running over my data this would have been discovered a year earlier: not accidentally.

• It is not clear what caused my heart issue. There are studies suggesting heart issues for men on ADT.  However, I had only been on Lupron for 4 months when my tachycardia arrived.   In my case it is hard not to wonder about the heart/ADT correlation as my heart seems to have improved post-ADT.