Thursday, February 6, 2014

Some Prostate Cancer Numbers

I'm going to use the frequently used PCA abbreviation to denote Prostate Cancer at times in this post.

One in 6 US men will be diagnosed with PCA in his lifetime.  Approximately 1 in 36 will die from the disease.  The cancer tends to strike late enough in life and there are enough medical techniques to slow the progression of the disease that men frequently die from another cause.  Many estimates claim that by age 85, 50% of all men have some level of prostate cancer, but this has never, to my knowledge, been unequivocally determined.  Most of the data is derived not from diagnosed cases, but from autopsies on older men.

I remember when Runner's World columnist George Sheehan was struck by prostate cancer.  After it became obvious that he could not be cured, he decided that he was going to make the disease kill him.  He was going to take such good care of himself that nothing else would get him.  And, in November of 1993, he died from the cancer.

According to the CDC, prostate cancer was the most common cancer (non-melanoma skin cancers excluded) in the US in 2010, with 126.1 out of every 100K men being diagnosed that year.  Female breast cancer was the second most common (male breast cancer exists but is uncommon and was not included in the charts I used).

When looking at death rates, lung cancer jumps to the top and then breast and prostate cancer are nearly tied at number 2.  But, lung cancer kills at more than twice the rate of either breast or prostate cancer.

Funding for cancer research provided by the NCI shows some very interesting disparities in how research money is spent.  Per case, among the more prominent cancers, (this data is from 2006, not 2010 as above), prostate cancer received $1318 in funding, while breast cancer led the pack at $2596.  Lung, colon and pancreatic cancer were in between these other two in terms of funding, but lung cancer was the only other cancer to receive less than $2000 per new case - closer to $1500 actually.

In terms of deaths, the number of dollars spent are even more intriguing.  Breast cancer still leads the pack, but the relatively low death rate from PCA pushes PCA to second in funding per death.  In some ways this is confusing because 2010 data showed rates of prostate and breast cancer deaths to be nearly identical per 100K people, while the 2006 data shows that there were 1/3 more deaths from breast cancer than prostate cancer (absolute numbers vs. rates per 100K people).  Lung cancer drops way to the bottom, at only 12% or so of the funding per death that breast cancer receives.  I'm curious if lung cancer seems to lag because it's seen as a self-induced cancer, with most cases tied to smoking.  Or perhaps it lags because it's also quite deadly.

So, those are some interesting statistics.  I'm not going to comment much more on this, but I do think some things seem a bit skewed here.  For men, prostate cancer is very much the equivalent of breast cancer in women. PCA is less deadly overall, but both cancers profoundly affect how people see themselves as sexual beings, and the treatments for both can involve the loss of a lot of dignity.  Let's just say that I've become quite used to the command to "drop my pants" in the past few months.  I don't even look around the room any more to see who is there.  I just drop my pants.  This morning, it was two nurses at Dartmouth.  I dropped my pants on command and didn't think twice about it.  I'm sure that breast cancer carries similar indignities for women and I'm sure if this post gets read, someone will tell me they are worse.  At that point, the second half of this post might be informative, in terms of the indignities that men go through.

So, why is it that men seem to have done nothing like what women have done to raise awareness, raise money for research, or turn this into a cause?  Is it just a difference in the sexes?  Why the federal funding discrepancies between the two diseases?

Now, onto a second set of numbers.  These are my personal numbers from my experience.

Late last summer, I had a series of PSA readings around 5, with 4 being the top of the normal range.  A digital rectal exam (and there were many of these) showed no real issues.  It was noted that one side of my prostate seemed larger than the other side, but this discrepancy is not statistically important when looking at actual cancers found.  So, my blood test was out of range and my DREs were nearly normal, with one slight anomaly noted by one (of many) providers.

At this point, a biopsy was suggested.  I did my homework, and I realized that the chance that a biopsy would show cancer was about 25%.  The odds were in my favor, but I lost that round.

After talking to lots of docs, I picked a treatment technique and I'm now on the other side of that treatment.  I chose surgery without any adjuvant therapies - radiation or androgen deprivation.  The surgeon said that nomograms showed the chance that I'd have an affected lymph node to be about 1%, and he never removes lymph nodes at that low a chance.  This shortened my surgery by 30 minutes.

I got my post-op pathology report and it essentially matched the pre-op estimates.  Using some nomograms from Sloan Kettering, I have a 99% chance of being cancer free at two years with no more treatment at all.  At 5 years and 7 years, it's 97%, and at 10 years, 96%.  That says it's very likely that I'll be defined as "cured" at the five year mark.  Unless I'm unlucky again.  Yes, even in my low risk category, there are recurrences, and I'll spend the rest of my life getting blood tests to monitor for that possibility.

The three major goals of the treatment are, in order, to cure the cancer, maintain urinary control (continence) and maintain sexual function (potency).  I've already covered some cure statistics above.  Next, I'll talk a bit about the latter two of these.

For most men, full return to continence (and the definition of this is often debated) has a median time of just under four months.  For certain patients, primarily younger patients who had nerve sparing surgery with a highly experienced surgeon, mean time to return to continence is closer to two months.  I'm at one month right now, and I'm almost there.  I am guessing that by two months, three at the outside, I will be considered fully continent.  But, I am a younger than average patient, I had nerve sparing surgery, and my surgeon was very experienced, so I fit into the second category.

(This next section might be TMI  - Read at your own risk).
Almost all patients are impotent immediately after this surgery.  Due to a catheter for the first 1-2 weeks after surgery, sex is not possible at all (OK, I'm sure someone, somewhere has done it, but it wasn't me).  For four weeks, at a minimum, there are internal stitches in the urethra and bladder that are healing, and doctors tend to steer patients away from sex during this period of time, even if possible.

But, after four weeks, most doctors begin a period of treatments frequently known as "penile rehabilitation".  The rehab has two purposes.  First, it's hopeful that this will speed the patient back to potency by drawing blood into the penis and helping the tissues to stay active.  Secondly, if the rehab isn't done, the penis tends to permanently shrink during this inactive period.  I'm just not going to say anything more about that.

Penile rehab can include the use of PDE5 inhibitors (they tend to not work well, if at all, early on), vacuum erection devices, and injected drugs that result in erections (and yes, they are injected into the penis.  Did you just wince?)  Insurance companies, for the most part, cover absolutely none of the costs for this "rehab".

Younger, healthier patients often start to see some recovery by 3 months.  For many, it takes at least six months for a partial recovery.  Many patients take up to two years, and improvements out to four years is possible.

In the end though, even with nerve sparing surgery, for a younger patient who was potent at the time of the surgery, approximately 30% of patients will remain permanently impotent.  Everyone going into the surgery knows these odds, and everyone hopes to beat them.  But, some people simply never recover.

So, I had a 75% chance of a negative biopsy.  I lost.  I have a 96% chance of a long term cure.  Only time will tell.  I should be fully continent in another month or two and even where I am today really isn't bad compared to many.  On the other issue, just like recurrence, I simply need to wait and hope.

A friend recently told me that he didn't think he could have dealt with all I've gone through the past six months.  I disagreed with him.  While no one wants to go through it, when things happen, you have to deal with them.  You might not be happy about it, but you have to move on.


And, on that note, I skied twice last weekend, took a rest day, and then went to CrossFit on Tuesday.  Today, I'm going to work out again after work, before I take another rest day to get ready for a weekend of skiing.  I'm getting better and life does go on.

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