Reality Brick

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Since my last post, a PET scan has allowed my oncologist to give me a specific diagnosis (read on for details) and create a treatment plan.  On Wednesday I'll be going into the hospital to have a stent inserted into my ureter to unblock my kidney, which should relieve at least some of the pain I've been experiencing.  While I'm there, they'll also be putting a chemo port in so that the nurses won't have to play hide and go seek with my veins.  That's two minor procedures back to back in the same hospital.  One trip to Framingham and one recovery process for both procedures.  Convenient!

Chemotherapy should be starting next week, exact time and date have not been scheduled.  Finally I'll be able to go into attack mode and hopefully the rest of my symptoms will go away as the tumors shrink.

Symptoms?  Yes I still have plenty of pain, but it's mostly under control.  Despite my suggestion in my previous post that I didn't need opioids, I'm still taking them regularly because I can't take enough Ibuprofen in a day to keep me comfortable.  I must have written the previous post on a good day.  As an aside, if the smallest dose of aspirin is called "baby aspirin", then I'm on "baby opioids".

Despite that, I'm still making the most of each day.  I'm still able to drive around, go for walks (not so much running), and carry firewood up stairs to the wood stove.  Here's a random picture of me posing by the stove with a piece of firewood:

I've also temporarily suspended my attempts to eat healthy.  In fact, I'm trying to gain a few pounds, or at least stop some recent minor weight loss before starting chemotherapy.  Food will be tasteless and I won't have an appetite in a little over a week.  So today I ordered an omelette with sausage and mushroom for lunch, and it was fantastic.  I never knew an omelette could taste "chocolate good", but this one did.

Reality Brick

This post grew out of a conversation with my wife.  I was lamenting that my drafts of possible blog posts were too depressing.  She pointedly asked why they all need to be positive and inspiring?  She's had to remind several people that I'm still on treatment for my original cancer, and should not be considered cured or cancer free.  I admitted to some complicity in this because I grew weary of explaining incurable cancer, and for my own sake I wanted to believe in the improbable.  And so, with that in mind, I'm going to hit you and me in the face with the harsh brick of reality.  Try not to flinch.

A few months ago I ran a half marathon to celebrate the anniversary of my original cancer diagnosis, and everybody cheered.  I had beaten cancer!  However, even at the time of that half marathon I was already having some minor urinary symptoms that in retrospect were the first signs of cancer growing in me again.  We all raised the "Mission Accomplished" banner too soon, not realizing that my enemy was a disorganized band of terrorist cells that had no centralized leadership that could surrender.

My symptoms got worse, and I eventually went to the ER with severe pain that turned out to be caused by a tumor in my bladder blocking my right kidney.  More tests followed.  Eventually I got a specific diagnosis: neuroendocrine prostate cancer.  This is a rare and very aggressive form of prostate cancer that can't be detected using blood work.  I'll need regular scans indefinitely to track cancer activity.

It's not clear to me how this cancer developed.  My oncologist says it started when the normal neuroendocrince cells in my prostate turned cancerous.  However, there's plenty of evidence in the scientific literature that aggressive treatment for normal prostate cancer can cause it to undergo epigenetic changes and transform into the neuroendocrine form.  It's possible treatment caused my existing cancer to change into this new form, but in my specific case there's several reasons to believe this didn't happen.

In either case, once again there is rare, aggressive, metastatic prostate cancer running loose in my body and the diagnosis hit me like a brick in the face.  I knew that I was likely to redevelop cancer at some point, but was hoping it would take a few more years. Let's use this unfortunate development as a teachable moment.  This is the reality of living with incurable, metastatic cancer.  A cancer patient can look healthy, can feel healthy, can even run long distances, but cancer can come back at any time.

In talking online with other survivors, the vast majority of people that have lived with metastatic cancer for 10 or more years have fought back and forth battles where the cancer repeatedly returns but responds to treatment.  Usually in these cases there's a new or otherwise unused treatment available to beat the cancer back again.  Each treatment gives more time for a newer, better treatment to become available.  Some have literally surfed from one new treatment to another for 10 or 20 years or even longer.

The point is that long term survival doesn't usually mean being cancer free the whole time.  It's more like fighting a series of individual wars against the same enemy.  It's very unlikely for any treatment to drive metastatic cancer to extinction (thus, it's considered incurable).  Those cancer cells that do survive treatment are immune to that particular treatment and sooner or later will regrow into tumors.  Thus, the cancer comes back in a more aggressive, harder to treat form.  Shortly after my diagnosis a 10-year survivor on the forum had a recurrence and died a couple months later.  He went from happy and healthy cancer survivor to cancer victim with shocking speed.  An inspiring story of survival came to a sudden end.

This is the harsh truth I've been hesitant to share.  There are real reasons for hope and optimism, but ignoring the reality of the situation doesn't help.  It's reasonable to expect there will be multiple battles, and I'll need the same support and encouragement in each one of them.  Don't be surprised when a battle won is not the end of the war.  I've got a couple more bricks, then we can talk about hope.

Let's throw out some statistics.  For neuroendocrine prostate cancer, about 80% of patients will respond to chemotherapy, but the cancer will return in about 6-18 months.  Statistics apply to populations, not individual patients, but let's pretend for a moment I respond to treatment and get 18 months before the cancer returns.  I'll start feeling much better by summertime.  I'll enter 5Ks again, and hopefully run a fall half marathon.  Continued training over the winter would allow me to run a full marathon in the spring of 2021.  I'll feel fantastic.  Another victory over cancer, and believe me, it would be a genuine victory.  But by fall of 2021 my scans would show an small increase in tumor size.  By winter of 2021 it would be clear the cancer is growing again.  Would there be another treatment available to beat it back again?  I don't actually know.

The five year survival rate is only 15%.  That means 85% of patients don't even live that long.  And that's just for the neuroendocrine cancer.  My "normal" prostate cancer (which is also a rare and aggressive form) could also recur.  I could also have another bladder tumor.  By my oncologist's count I've had three cancers and any one of them could recur at any time.  Forgive me if I sometimes don't like being told "you got this!" or "you look great!".  There was a long discussion on the cancer forum where most men agreed they all hated hearing these things.  But I digress.

I'm done hitting us in the face now.  There is hope.  That 15% survival rate is not a quota.  Oncologists don't shoot patients for fear of having too many survivors.  The trick is to figure out what can be done to increase the likelihood of being a long term survivor.  And generally, survival statistics are right skewed.  Old age is really the only limit to how much a patient can outlive median survival.  For more on this line of thinking, read this piece by Stephen Jay Gould.

A minority of patients get exceptional responses to treatment.  If you consider my neuroendocrine cancer as a separate cancer, then I've already had an exceptional response to treatment for my other prostate cancer and that treatment is still working.  There's every reason to believe I'll get an exceptional response to treatment for the neuroendocrine flavor.  I believe that exercise, maintaining a healthy weight, and having a good laugh regularly all help with response to treatment and survival.  At the very least, they all help in coping with treatment, and treatment can't work if you can't tolerate it.

I've also held back a teeny weeny detail.  In addition to chemotherapy, I'll also be getting a relatively new immunotherapy drug.  I don't have any statistics on this drug.  If it's like other immunotherapy drugs, then it only provides a significant benefit in a minority of patients.  But, when it does provide a benefit, it can be nearly miraculous.  The drug cocktail I'll be receiving is also used for small cell lung cancer patients.  My oncologist had a lung cancer patient that took this immunotherapy drug for two years and the scans couldn't find any cancer by then.  They stopped treatment and she lived for another three years before dying of a heart problem.  She was in her 80s, who knows how long she could have survived her cancer if she was younger.

Here's another thought:  Laughter produces endorphins.  Endorphins stimulate the immune system.  Shortly I'll be on immunotherapy that uses the immune system to fight cancer.  Ergo, laughter helps me fight cancer!  I'm really not silly, I'm a cold and calculating murderer of cancer cells.  Bwahahaha.  Seriously, one of my strategies is to laugh so much I'll be late for my own funeral.

It's unlikely I'm at the end of my road.  Most likely I'll travel a bumpy and rocky road for quite some time.  There's even a small chance it will be a long smooth road.  Anything can happen.  Hope comes not from ignoring the negative possibilities, but from realizing the worst case is not guaranteed, and the best case is not impossible.  We literally don't know how well immunotherapy could work.  Will my scans show no cancer two years from now?  I just don't know. I really just don't know. I'm afraid I really just don't know. I'm afraid even I really just don't know. I have to tell you I'm afraid even I really just don't know.

And I quoted Monty Python in another blog post.  Bugger.