Proton Therapy Treatment Update

Treatment room similar to those at HUPTI.

I have now completed 37 of the 45 treatment sessions at the Hampton Proton Therapy Institute and can report that so far, things are going well and the side effects of the treatment remain manageable and outwardly, one would never know I am undergoing treatment.  Moreover, with early morning treatments, there has been little interference with my law practice. 

Since my previous post I have been struck by a couple of things: (1) how many individuals I know who have had prostate cancer and done very well and remained cancer free after treatment, and (2) the number of men NOT getting annual PSA tests and, as a result, leaving themselves vulnerable to going diagnosed until their cancer could be well advanced.  By the time one has obvious signs, less invasive treatments without long lasting negative effects may not be possible. My advise, if your physician is not ordering annual PSA tests is to demand them and, if need be change doctors. 

The other disturbing phenomenon is the failure of Riverside Health Systems and Sentara Healthcare and their captive medical practices to recommend proton therapy to patients. Why?  Because the Hampton Proton Therapy Institute - which cost $225 million to construct - is an independent facility and not part of their systems.  In hospital systems today, it is ALL about keeping the money in the hospital system's facilities and having captive medical practices (such as the urology group I went to) refer patients to in-system treatment providers. It is ALL about the money.  What may be best for the patient is of far lesser concern. Sadly, this is not a new development and has been going on for well over two decades in the Hampton Roads region as Riverside and Sentara have built their respective empires (I once did legal work for a system ultimately acquired by Sentara, so I saw the phenomenon first hand).

The take away?  If you are given a cancer diagnosis (or any other serious diagnosis), YOU have to do your homework and research what treatment options may be the best for your situation. Proton therapy may be an option.  Here in Hampton Roads, traveling to VCU's amazing medical complex in Richmond (where I had hand surgery in 2016), UVA's medical center in Charlottesville, or elsewhere may be the best route to pursue.  It's your body and your life, so be engaged and educate yourself.

Dealing With a Cancer Diagnosis; The Importance of Healthcare Coverage

I have debated whether or not to write about my latest challenge for a couple of weeks. I want no pity or sympathy.  When this blog first began, it was intensely personal as it described my often extremely turbulent coming out journey.  To my surprise, I had men from around the globe reach out and tell me that my hearing saga had helped them in their own journey.  Over time, the blog morphed into something much more political given the need for gay rights advocacy.  

Now, having learned that I have prostate cancer - thankfully, not an aggressive type and with an extremely positive prognosis - I opted to talk about this latest chapter in my life in the hope that others will get themselves checked out and, if necessary, get treatment. From my research, prostate cancer is among the most common forms of cancer in men - its causes are unknown and, in my case, I have no family history of prostate cancer. It is also one of the most survivable when discovered early and properly treated.  One of the big problems, however, is that it often has few discernible signs until well advanced at which point mortality goes up and the treatment options become more sever with more permanent impairment.  The bottom line: get tested regularly and ignore the thoughts of some in the medical community that an annual PSA test is of uncertain effectiveness or involve srisks (candidly, it is simply a matter of giving some blood). It's your body and you need to be your own advocate.

So how did I come to be diagnosed?  It began with a simple annual physical (the cost fully covered by my insurance) which included blood work, including a PSA - prostate-specific antigen - test that showed a somewhat elevated result (things from sex, to running, bicycle riding to strenuous workouts can cause results to be elevated - who knew?). As follow up, over a period of months I had additional PSA tests and the results remained consistently somewhat elevated.  As a result, an MRI was done which showed a small lesion.  This in turn lead to a biopsy - a truly unpleasant experience - that confirmed I had a problem.  I actually got the news while driving to court one morning with the doctor telling me "I have bad news and good news"after I stated I did not want to wait for an office visit to get the news: the bad news is you have cancer, the good news is that if you have to have it, you have the best type to have. An office consultation followed with the husband at my side where the list of options was discussed: (i) do nothing and monitor the situation through annual PSA tests and annual biopsies - I said "no thank you "to annual biopsies since one was more than enough, (ii) surgery, (iii) chemotherapy, (iv) traditional radiation, or (v) proton therapy.  I immediately rejected the surgery option - which can result in serious, lasting effects - and chemotherapy having seen my late sister go through that nightmare. I ultimately opted for proton therapy, the least invasive and most state of the art treatment option.  Thankful, a proton therapy facility is only ten minutes from our home. 

There are some preparation procedures one must undergo in order to receive proton therapy treatments, but none are as bad as the diagnostic biopsy procedure. The treatment sessions themselves take 30 minutes or less and while there are side effects, all in my case are manageable and far better than those that would come with the other treatment options.  One big issue for those considering this type of treatment is that the treatment regime lasts for up to or even over nine (9) weeks of daily treatments and proton therapy facilities are not located in many states.  The other big issue is the cost and whether or not one's insurance will cover the treatment regime.  Fortunately, between Medicare and my Anthem supplement, my treatments are fully covered, although one of the drugs I'm on to deal with side effects is ridiculously expensive - the pharmaceutical industry continues financially rape American patients - and the out of pocket cost is significant. 

One thing this experience has also taught me is the need for healthcare coverage for all - coverage that covers preventive measures and diagnostic testing.  Without healthcare coverage, many men will never get what could be life-saving testing and only when pronounced symptoms from advanced cancer will they seek treatment, probably via an emergency room visit.  By that point, the chance of surviving may have been be lost.  The same holds true for stripped down insurance coverage that either (i) does not cover diagnostic tests and/or (ii) leaves one with financially devastating co-payments.  Sadly, America's healthcare system - if one can even call it that - callously condemns some to death and/or financial ruin.  Not surprisingly, with prostate cancer, European nations with national, universal healthcare coverage have higher survival rates that in the USA. I have long been an advocate for national healthcare coverage - now, with this experience, I believe it is even more necessary.  We need to stop treating some lives as disposable. 

To men reading this post, I hope the take away is to get tested and do not procrastinate. One client I shared my story with admitted that he had not been tested in years - he plans to rectify the situation and will be getting tested. I hope others will do likewise.  I also hope that anyone diagnosed will study their options and not blindly follow doctor recommendations.  Unfortunately, too many medical practices are now owned by hospital systems that urge physicians to direct clients for treatment at their facilities, whether or not they can provide the optimum treatment regime.  In my case, the Hampton Proton Therapy Institute is not affiliated with either of the two dominant hospital systems and, but for my own research (and having a friend who had undergone proton therapy), I might have been pushed to seek a different treatment regime.  Currently, I have my treatment sessions early in the morning and have missed no days of work and have a very positive prognosis.