The Color of Cure

Lautrec_in_bed_1893

Quick, what color ribbon is used to increase breast cancer awareness?  Now what color for prostate cancer?  If light blue didn’t immediately jump to mind join the club, I did not even know September was prostate cancer awareness month and I had surgery on the 12th of that month.

Does prostate cancer get the attention it deserves?

If you are thinking prostate cancer doesn’t deserve the same support as breast cancer you are not alone.  I reached out to our local prostate cancer awareness executive only to learn that the organization had folded due to lack of funds.  He said all his sponsors were supporting breast cancer awareness exclusively.  I am certainly an avid proponent for saving the “Ta Tas” and I also believe we would ALL benefit from more open, honest and candid conversation about more than just the cancer in prostate cancer.

Why does prostate cancer engender so little conversation?

It is certainly not because of the number of people who are diagnosed with the disease, as shown in this infographic from the Huffington Post.

Huffington post article incidence of prostate cancer

What is significantly different are the number of deaths. 

Breast cancer kills twice as many people as prostate cancer.  Prostate cancer is predominantly slow growing and is often diagnosed later in life resulting in many men dying of some other cause.

This article is for anyone for whom avoiding death is not the only outcome
they would like to achieve after being diagnosed with prostate cancer?

I was never worried about dying.

Maybe I should have been concerned about the possibility of death but, having worked very hard to be as healthy now as I was in my thirties, I didn’t even imagine the end of my life as a possibility.  What did seem to be a very realistic outcome was the impairment of one of my favorite appendages.

 Conversations toward cure

I am sure there are many who are cringing at this conversation and therein lies the crux of my hypothesis.

I believe that prostate cancer does not inspire the kind of support that breast cancer does, despite the equivalence of their occurrence, because both men and women are unwilling to have honest conversations about more than just curing the cancer.

We all want our cancer cured, but what if you could have the cancer removed AND have the best chance of retaining the other functionalities often sacrificed in the process?

 Avoiding the dis-ease of a hasty decision

It is possible that I am overestimating the number of relationships for which this is important but considering that the global erectile dysfunction drugs market was valued at $4.3 billion in 2012 [ii] there are many for whom full functionality is of high importance.  This article is for all those men/couples who want the best opportunity to eliminate their disease without committing themselves to the dis-ease of incontinence or impotence.

Take responsibility for finding your best solution

I am not a physician nor a cancer expert of any kind.  I am a VERY inquisitive patient.  I also have a huge respect for any healthcare professional who has not allowed our system beat them into submission.

Dr swamped with reporting

The first urologist I met with (not referred to by name anywhere) made it abundantly clear that he was in charge and I was interrupting his busy schedule.  That was a quick visit.

Lesson I:  Don’t be afraid to write off any missteps you make along the way to finding your ideal solution.

Lesson II:  While we are on the topic of steps.  If you have diagnostic results indicating any form of cancer start stepping.  Denial is deadly.  In my case I had a rapidly increasing PSA over several years.  My cancer was growing dangerously close to some very important nerves.  If I had waited my outcomes may not have been so favorable.

A short section on simple stuff.

Short because, despite what we might hope, there is nothing simple about cancer.  My first experience with cancer was melanoma more than ten years ago which, according to the which according to the National Center for Biotechnical Information[i], should have reduced my likelihood of getting prostate cancer.  Alas I am yet again an outlier.  Which brings me to my next lesson.

Research is retrospective

Scientific research takes a huge amount of time.  Standards for scientific certainty are arduous and take many years.  I had thought, for example, that looking at statistics for the long term outcomes of treatment options (radiation vs surgery, robotic vs traditional) would yield a clear path to the best possible decision.  The flaw in that thinking is that the best scientific analysis of 15 year outcomes is based on treatments available at least 15 years ago.

Lesson III:  The treatments, techniques, experience, outcomes you seek have not been available before today.  We all want to know our “odds” but even the best predictions are based on past experience and everything is changing so fast that past performance may have very little to do with the present.

One such study was the Prostate Cancer Outcomes Study, funded by the National Cancer Institute.  Described as the first comprehensive, population-based assessment of sexual function and urinary continence among men treated with radical prostatectomy for early stage, localized prostate cancer.

I hoped for good news.  It wasn’t.

The study concluded the impotence rate at 18 months or more after prostatectomy was nearly 60 percent.[ii]  YIKES!!!!

Don’t get discouraged

This was not the kind of outcome I was looking for; so we did, as we always do, we kept looking.  We scoured the planet looking for a team that didn’t settle for traditional outcomes and found the Memorial Sloan Kettering Cancer Center.  I should admit, with great pride, that it was my wife who found MSKCC which brings me to an enormously critical point.

I did not have cancer.  We had cancer.

My wife, my mom, family, and friends all shared my cancer, but it is my wife who will ultimately share the long-term costs and benefits of our ultimate decision.

Want to know more?  See The Ritz Carlton of Healthcare

Summary

  1. Don’t let cancer scare you.  Frightened people don’t think thoroughly.
  2. Include your spouse/partner in every appointment.
  3. Don’t be shy.  Pretending an issue does not exist doesn’t make it go away.
  4. Learn everything you can about your cancer and all the available treatments.
  5. Ask about the long term- 5, 10 and 15 year outcomes.
  6. Don’t limit your future for the sake of convenience.  Buy local if you can get exactly what you want and be willing to travel if you can’t.
  7. Be the perfect patient.  Do exactly what is asked (this includes kegle exercises)
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