Another round

As mentioned in the last post, my post-surgery PSA test revealed that there was still some cancer: the surgery did not get it all. A new team got involved.  I met with a radiation oncologist at Mayo to discuss next steps. The oncologist was confident we could still beat my disease. The plan was radiation treatment  to the pelvic bed to catch any remaining cancer: "salvage radiation".

The first step of the new plan was Androgen Deprivation Therapy (ADT). ADT is not chemotherapy. Rather, it is "hormone therapy".  Prostate cancer is stimulated by male hormones, aka "androgens" (testosterone mostly).  Thus the cancer can be slowed down by reducing a man's testosterone level.  This is the simple approach of ADT: reduce the patient's testosterone level and slow down the cancer.  ADT is very effective.  Unfortunately, it does not last forever in most men.  Eventually the cancer finds a way without the hormones. Some studies have also shown an improvement in radiation effectiveness by having the patient on ADT during the treatment: the weakened cancer is easier to kill.

So, from Dec. 2016 to June, 2017 I did a six-month treatment of ADT.  A few weeks after receiving the ADT shot (Lupron was the specific drug) my PSA dropped to undetectable.  Yea!  Like most men on ADT I did experience some side effects.  For instance I had hot flashes!  Yes...same things that women go through during menopause.  Also, my sex drive disappeared, and my energy level dropped.  

Once my PSA level was undetectable the oncologist made a plan for the radiation.  This involved an MRI of my pelvis in order to get a good understanding of where all the parts are.  At my request we also had an additional MRI of the base of my spine.  I had been having some sciatica in the last year and I was convinced there was a connection between the cancer and the sciatic nerve.  Both MRIs came back looking good: no evidence of cancer.

With a plan in place, the radiation was scheduled: 6 weeks of radiating my pelvis.  Oh boy.

More details...

• Regarding ADT side-effects. I think most men (myself included) are pretty horrified by the thought of losing our sex drive. I can only say that, for me, it was not that bad. I didn't miss that which I didn't want.  I have a wonderful wife who was very understanding and we made things work. Not having a sex drive does not mean that sex is impossible.  Rather, it just means you have to make more of an effort to get interested. I think it was probably a great way of appreciating how the female world sees sex.

Grim news

There have been many scary moments during my cancer journey but the highlight is probably the day I got my pathology report back from the surgeon: 

• Gleason 9
• Extraprostatic extensions (the cancer had grown outside the prostate walls)
• 3 positive margins (the surgeon did not get all of the cancer)
• T3a (stage 3 cancer)

Gratefully there was no cancer found in the seminal vesicles or the pelvic lymph nodes.

I will always remember these words in the surgeon's records: aggressive cancer.

I had read dozens and dozens of articles and research studies on prostate cancer outcomes with various scores.  This was a very black day.

My one hope was a calculator the surgical resident shared with me during our meeting shortly after getting the news.  The calculator suggested I still had a good chance of surviving another 15 years!

A few weeks later more bad news arrived: my first PSA test after surgery.  The hope is that the PSA measured after the surgery is "undetectable" (less than .1).  Mine was .11.  Uh oh....more treatment needed.

Recovery

WARNING!  This post is graphic (urine and penises and pain...oh my!)

My post-surgery experience was not very positive. I had an unusual amount of pain in my abdomen.  I was unable to sit down for almost 6 weeks. Gratefully this is unusual.  Most men do not have this much pain.  A physician friend believes it was due to fluids left in my abdomen which was confirmed in a later MRI.

Like all men I had a catheter for two weeks. Not fun. Not so much painful as irritating and a constant reminder that I had tube up my penis. Very unpleasant. Every movement was uncomfortable.  I did my best to ignore it but I was SO grateful when the day came to have it removed. 

Removing the catheter was an adventure in itself. The thought of somebody pulling the catheter out (remember...I was anesthetized when it was put in) freaked me out. In fact it was not so bad. No pain, just a creepy feeling.

Now that the catheter was out I had a new problem: incontinence. As mentioned earlier most men have acute (temporary) incontinence for a few weeks or months after the surgery. In my case it took a couple of months to get my control back.  It is hard to find good statistics on the recovery time but I think my time was close to the median for my age.  Apparently age can affect time to recovery: I was young. The recovery was not linear for me.  I went many weeks with minimal improvement and then saw sudden changes. Of course during the recovery period you are returned to your 1-year old self: diaper-laden.  This wasn't wonderful but it was not that bad.  There are great products available.  They are almost stylish!  OK...I admit that is a stretch.

The next "problem" was potency.  As mentioned earlier men generally have reduced erectile function after a prostatectomy (again...age of the patient matters). Though I had "nerve sparing" surgery I was no exception.  Due to pain from surgery I wasn't interested for the first couple weeks.  My surgeon provided Viagra for the first few months.  Having watched the marketing for years I was always a bit skeptical but it is quite amazing.  Remember though: not every guys has nerve-sparing surgery and even then there are no guarantees of any recovery.  In fact, two years later and I still don't have the pre-surgery erections.  I can manage a wimp hard-on sometimes but I need the drugs for the real thing.

One important point to make about this whole sex issue: erections are not equivalent to orgasms.  It is different for every man but my orgasms were not as affected as my erectile function.  I was able to achieve orgasm within 2 weeks of surgery...well before I was even close to obtaining an erection. 

More details...

• Work.  I was 59 years old while going through this. Still very active in my career and not ready to let go of it. My employer was very cool. They gave me a medical leave (this is actually required by law in most situations) to give me time for recovery. In the end I only missed about 3 weeks of work.  This was mostly because I wanted to work.  Nothing is a better salve to anxiety and pain then work. I was grateful to lose myself in my job as quickly as possible.  

Under the knife

Like all men newly diagnosed with prostate cancer my attention turned to treatment options.  For many men the best options is simply waiting.  This is a common path for men with low-risk disease.  For men like me with high-risk disease there are several options but almost all men pick either surgery (prostatectomy) or radiation. There are various pros/cons to the choices.  At the time of my decision the two options had similar outcomes but surgery had an attractive advantage: if necessary (surgery did not get all of the cancer) radiation could be performed after the surgery.  It was also appealing on an emotional level: I wanted this cancer completely out of my body.  My prostate and I were no longer friends!

Having decided on treatment the next step was picking the surgeon.  This was harder than I thought it would be.  All of the data on prostatectomy suggests that successful outcomes are highly correlated with the skill of the surgeon so I was hunting for a prostate ninja.  I talked with a local surgeon who was recommended by my urologist and then paid a visit to a Mayo Clinic surgeon who had helped a friend.  Both doctors were very experienced (> 1,000 procedures) with impressive outcome data but the Mayo mystique won in the end. I chose to have the surgery as soon as possible but it is necessary to wait at least 6 weeks after a biopsy to allow the prostate to recover.  My surgery (a robot-assisted radical prostatectomy) was scheduled for September 2016 in Rochester, MN.

The surgical experience at Mayo was very positive. The doctor was confident and concerned. The nurses were angelic. Yes, the nurses were amazing. I really can't describe how dear they are to me now.  I awoke from my surgery in pain with a catheter (tube running from my bladder to a bag on my leg....through my penis).  I'm confident this was the most vulnerable moment of my life.  The nurses were so sweet, constantly concerned about me, sharing stories of their families.  It was a very difficult evening and my nurse angels got me through it. The next day I was discharged and my wife drove us home.

More details...

• While I loved my Mayo surgical team for their confidence and skill I feel like their attention to my individual situation was less than impressive. For instance, my biopsy showed perineural invasion. Recent studies suggest that "nerve sparing" (attempts to keep the nerves that control erections intact when removing the prostate) surgery is not recommended in that situation but my team did not seem interested in the topic. I had a strong feeling that the surgeon measured himself on the basis of potency outcomes. If my erectile function was good he was successful.  The potential risk to my life seemed less interesting to him.

• Prostate cancer treatment options can be quite contentious.  Unfortunately, many of the parties to the decision lack objectivity.  The surgeon wants to cut.  The radiation oncologist wants to zap you.  The medical oncologist (well...hopefully you won't meet those guys...they come on board when the disease metastasizes) have other plans.  One of the books that helped me see the landscape a little better was this one: Invasion of the Prostate Snatchers.  The book has a very shock-prevoking title which you should ignore.  It's survey of prostate cancer and options is very helpful.

The world turns upside down

When my wife and I returned to Minnesota a year later, it was time for another annual physical.  I had been dreading this event.  I knew that I wasn't really out of the woods.  Deep inside I was assuming that prostate cancer would eventually be in my future.  At this point, though, my focus was on treatment side-effects (should cancer be discovered).  I was still fixated on incontinence and impotence.  The story in my head was (1.) I get diagnosed, (2.) I have surgery, (3.) I have side-efffect(s) for the rest of my life.  Other dangers were not really part of my internal discussion: "prostate cancer was a slow growing malady", "men didn't usually die from it", "only a small percentage of men have the aggressive form of the disease".

The results came back.  This time my PSA was 12!  My internist commented on the inaccuracy of PSA tests and suggested we repeat it or take a Free PSA test. I was not reassured. I called a urologist immediately to schedule an appointment.  I did take the Free PSA and another PSA test after getting off the bike for a week.  As expected the PSA dropped (to 10...not exactly reassuring) but the Free PSA results came back with a low value (low is bad...indicating the PSA most likely reflects cancer vs. some other prostate issues that can cause an elevated PSA).

The urologist scheduled a biopsy.  The biopsy was very painful for me.  So painful the urologist only took 4 samples instead of the preferred 12.  The slow clock of waiting for medical results began.  A week later I had my answer: "Yes, you have cancer, your gleason score is 7 (4+3)".  I had been expecting the cancer result but had been assuming a 6 score.  The 7 was scary.  More so when I did more research and discovered that a 4+3 is worse than a 3+4 (gleason scores are a total of the score of the primary pattern  + the score of the secondary pattern).  4+3 was considered more akin to a gleason 8.  My biopsy also mentioned "perineural invasion", an indicator of high risk cancer.  Suddenly my fears changed from diapers and erectile dysfunction to death.  The horror of my situation began to dawn on me.

More details...

• My biopsy experience was unusual.  My urologist at the time (who does not do a lot of biopsies) commented that he had not seen somebody have so much pain before.  His guess was that I simply had more nerve-endings than most men.   I was relatively young for a prostate cancer biopsy and research indicates younger men generally have more pain.