In a recent thread, an off-topic conversation started that deserves discussion. Specifically, whether or not I, or you, or anyone else having an unfortunate medical condition, should go public with that information.
Let me introduce myself. My name is Cary Jensen, and I was diagnosed with prostate cancer on December 22nd, 2017. I joined this group about three months ago, but this is my first post. And with this post I want to share some of my observations and experiences, with specific attention to the public vs. private conversation.
But before I do that, I think it meaningful to share with you my situation. Due to an out-of-range PSA of 6.9 (yeah, I know, it’s not that high) during my annual checkup with my primary care physician, I was recommended to a urologist for a biopsy. Of the twelve samples taken, four of them showed cancer. Most were +2+2, but one was +3+4. At the time I was 58 years old, and I opted for a radical prostatectomy.
I had the surgery nine weeks later, giving me ample time to recover from the biopsy. The lab report that came back revealed that the cancer was contained within the prostate, and that only five percent was affected. However, the cancer rated a +4+3 on the Gleason scale, which as many of you know, is not good (nor is it desperately awful).
Within a week of the surgery, I developed a devastating case of AFib (atrial fibrillation), which was probably caused by the three pulmonary embolisms (blood clots) they detected in my left lung at that time. I’ll spare you the details, but the AFib persisted and I had an ablation this past fall, which seems to have solved that particular problem.
Following my surgery, I had the obligatory PSA tests every three months. The first two returned a result of “undetectable.” But the one I had this past October returned a PSA of .20. My urologist asked me to take another, ultra-sensitive PSA test a couple of weeks later, and it returned a PSA of .141. The cancer had spread.
My urologist said that the cancer was probably microscopic. A full body bone scan and a 3T (the T stands for Tesla) MRI (magnetic resonance imaging) revealed no detectable tumors, so we attacked the cancer aggressively. Within three weeks I had received a 6-month Lupron Depot injection (ADT), and started a radiation treatment schedule. I had 25 sessions of IMRT (intensity modulated radiation therapy) at a total dose of 4,500 cGy to both the prostate bed as well as the surrounding lymph nodes, and a final 13 sessions of IMRT at total dose of 2,340 cGy to just the prostate bed. That ended about six weeks ago.
Now, back to the point of this post, to go public or not. I’ve thought about this a lot, which is why I am sharing my experience with you all. And, having said that, I understand that each of us have different circumstances, and there may be important factors that influence your decision about whether you should be open about your condition or not. I made my decision, and I recognize that it’s not appropriate for everyone. So, I will not judge, and I am not making a recommendation. We each have to make this decision for ourselves.
Upon receiving my initial diagnosis, I decided that there were some people who needed to know, and some people that I wanted to know. The people who needed to know, in my case, were my immediate family (my wife was involved in this from the start, and she was with me during my initial discussion with my urologist following my biopsy, so she was already in the loop). I am also an avid dancer, and I decided that my immediate dance community should be aware, since I anticipated that my upcoming surgery might keep me off the floor for some time. I didn’t want them to speculate.
I also informed my close friends and my current clients (I am a consultant, and my wife and I have had our own business for over thirty years).
So, there were quite a few people who were aware of my situation, and I received a great deal of support from them. This was helpful. I didn’t have to bear the burden alone.
In the months following the surgery, I made the decision to go public with my situation. And here is where things get interesting. I am well known in a very narrow area of software development. I have published a couple dozen books on software development, written numerous magazine articles, and have spoken at hundreds of conferences. I also have thousands of twitter followers (it is a narrow area indeed). I reasoned that software developers, in general, are a pretty arrogant bunch, and many of them think they are super human. As a result, a fair percentage probably don’t get annual physicals. I know some who haven’t been to a doctor in decades. I thought that, due to my reach, I should stand up and say “get an annual physical, it might save your life.”
But I was waiting for the right time. And, I realized, that it might have an impact on my career. So I procrastinated some. I shared my intentions with some of my closer colleagues, and they said they thought it would be a good idea, but still I waited, almost ten months.
It wasn’t until I received the diagnosis that the cancer had recurred that I went ahead with the decision to go public. I admit, it kind of sent a mixed message. Originally I wanted to say “Get an annual checkup, it might catch a serious condition early. And, if you notice something unusual, get it checked out. My annual checkup found cancer, and now I am cancer free.” But now my message was 1) get annual checkups. 2) monitor your health, and 3) my cancer is back. Uhhgg.
Oh well, but I did it anyway. I posted a message on my blog, which, if you are interested, you can read at caryjensen.blogspot.com/201... . I also tweeted about this, and also published a message on my personal Facebook pages. My thinking was this: If I can convince some readers to start a program of annual checkups, and at least one catches a serious condition early enough to make a difference, it would be worth it.
But would there be consequences for me, for going public? Well, fortunately I didn’t have to worry about that. I am pretty close to the end of my career, and, I figured, that if a potential client would use the knowledge of my journey as a reason to not engage my services, I probably wouldn’t want to work for them anyway.
So, the next question is: Did I experience any negative repercussions from going public? And I would say “Yes.” It was minor. One of my clients, who had asked me to provide consulting services in early 2019, would no longer return my emails. And people in my neighborhood would remark “Wow, you look fine. I can’t believe you’re going through radiation therapy.” I thought that that was funny, and wrote “what did they expect, that I’d be hunched over and bleeding through the nose?”
Oh, yes, I did write about it. I set up a Facebook page where I shared my experiences, contemporaneously. (Again, if you are interested, feel free to check out facebook.com/CaryOnUpdates .) That was so much easier than writing emails that I would blast out to the many people who asked to be kept up-to-date. Some, I figured, would tire of my constant updates. By putting it on Facebook, it would be their choice to either following along or ignore. Problem solved.
Next question is: Did I experience positive effects of going public. And the answer to this question is an unqualified “Yes.” I received support not only from my closer friends, but from people I had interacted with over the years in my professional community, people who had been affected by one of my classes or one of my magazine articles or books, and some of whom I never really met. And, as I mentioned above, if there was a chance that I might have influenced someone to look after their health just a bit more, I would accept that as a success.
So, I leave you all with this. Yes, going public can have a negative impact, as there are those who will judge you. But by sharing your situation, you may not only get additional support, but you may also spur others to take a closer look at their own health.