I never joined a fraternity in college. I sort of found them to be silly and a time-waster. In reality, the best fraternities probably would not have taken me. Plus, I had the same girlfriend all through college, (I do not recommend this) thereby eliminating one of the biggest selling points of joining a frat. Finally I was concerned that during the pledge process objects could possibly be placed in my rectum. So I skipped the entire Greek experience. (Pun intended)
So it is with a touch of irony that I join my first fraternal group at age 45. A group of 4,000 men that has one thing in common. In fact the name of the group is even based on the fact that we all have had the same object inserted in our rectums. Yes, isn't it ironic? Welcome to the "Brotherhood of the Balloon" - my first fraternity. We 4,000 actually have several things in common...once again starting at the rear and working my way forward - we all have had urologist's fingers and biopsy needles up there as well. But of the hundreds of thousands of men with Prostate Cancer what really makes us 4,000 unique is the balloon and the fact that it means we all have chosen Proton Beam Radiation as our treatment.
So, what of this balloon you speak? This comes from the website (members have access to the super-secret parts) ...
The only criteria for membership in the BOB is having been diagnosed with prostate cancer and choosing Proton treatment. One need not have completed proton therapy to join. During treatment, the Proton Beam is focused on the prostate gland plus a 12 millimeter (half-inch) margin around the gland. Treating this extra margin helps to kill any cancer that may have escaped the gland . This margin of safety may include part of the rectum, which is adjacent to the prostate. In order to protect the posterior (outside) wall of the rectum from radiation, a small, lubricated balloon is inserted into the rectum and inflated with water prior to each treatment. A secondary function of the balloon is to help immobilize the prostate, by pushing it up against the pelvic bone..So, our fraternity has the infamous “balloon” as the common denominator for all members.
Maybe I should be a bit more respectful about the group I just joined. But humor really helps deal with the frustrations and stresses of Prostate cancer, so I default there often. Probably the best thing that helps deal with the frustration and stress of a PCa diagnosis are the many websites out there. They are true communities where one can find information, support, guidance and friendship. You are joining these communities along with newly diagnosed people (just like you)...and when you arrive you can usually find many others who have "been there and done that" and are willing to share their stories and offer advice. Oh sure, like anything else on the internet there's some misinformation out there....there's know-it-alls and bullies and the occasional troll or person with an agenda. However the percentage of these is much, much smaller than your typical websites where one might join to discuss sports, politics or current events. I believe that members go out of their way to be respectful of the plights and views of all at most of these prostate cancer sites.
I assume that most doctors must hate these sites. They create instant medical "know-it-alls" who challenge the advice of doctors who went to school for years and have practiced in the real world for many more years. And some of us are better at using the internet for research than others. The internet is a dangerous weapon in the hands of some people.
But let's turn this around...I'll bet there are more than a few well-grounded doctors (who do not have agenda's of their own) who appreciate not having to start from the very basics with their informed patients. (What was the Vince Lombardi quote??? "Gentlemen, THIS is a football.") When you consider just how limited the actual doctor-patient face time can be I think much more gets accomplished when an informed patient is asking the doctor a series of questions about his diagnosis/treatment rather than that precious time being spent just getting the patient up to speed on the basics. In my case I did exhaustive research online and then I actually spoke to 4 people that had prostate surgery and to 5 people that had completed Proton Beam Radiation. I only knew one of these gentlemen prior to our conversations.
These website communities are invaluable and I lurked and learned and eventually participated at most of them as I journeyed from high PSA toward biopsy to diagnosis to treatment....and I'm sure I'll continue to participate and advise those who follow.
Some recommendations:
The first site is probably the best. It has great background information for anyone concerned about prostate cancer and while it does not have a true message board it has an amazing database of personal experiences that goes back years and can be searched by age, PSA, Gleason score or treatment choice.
The second site has an active and helpful message board. It tends to be surgery-heavy, but that's the route most men take....and, it's the treatment with the most variables so you'll see many discussions of the potential consequences of surgery.
The last site is focused on Proton Beam Radiation and is therefore biased towards that treatment...but hey, they're my fraternity brothers.
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