Finally! I’m so glad this past week is over. It was emotionally one of the roughest weeks I’ve had in a long time.
It all started last weekend, which was a three day holiday weekend for those of us here in the U.S. Because I want to be as prepared as possible going into my April appointment with my doctor, I spent two of the three days continuing to research all sorts of things that will help me have a better informed discussion.
I posted a question in an online support group under the heading, “Recurrent Prostate Cancer and Salvage Radiation Therapy.” What followed were some very thoughtful sharing of stories from other patients who had been down that path already. But there was also a very robust discussion between a retired physician, himself a prostate cancer patient, and a long-time prostate cancer patient advocate. Both had some great insights—sometimes conflicting—and both connected me to other resources.
I’ll spare the full-blown details, but what stressed me out last weekend—and lasted well into the week—was the notion that, despite the plethora of information out there about recurrent prostate cancer and treatment options, too much of it is conflicting or inconclusive, and there’s no clear answer for me.
When you know that you’re going to have to make a decision that could impact the length of your life and the quality of your time remaining, not having clear choices is a problem. And once you choose your path, there may be no going back. You may have to live with permanent, life-altering side effects as a result of that choice. The risks may be low, but they’re real.
Cancer, treatment options, side effects, and imaging technologies were pretty much all that I thought about all week long, and it took its toll emotionally and physically. I couldn’t shake the thoughts from my head, no matter how hard I tried. In my role as a volunteer manager, I really needed to be as upbeat and positive as I can. I tried my best last week, but it was exhausting doing so.
I know that much of this stress is self-inflicted. If I’d just step away from Google and stop researching, then this may not be so bad. But that’s not how I’m wired. I will say, however, if my doctor’s appointment was tomorrow, I’d feel pretty comfortable going into it with the knowledge that I’ve amassed so far.
I also know that there are no guarantees no matter which path I choose. I just want to choose wisely.
6 thoughts on “Day 2,663 – Research Induced Stress”
Dan, you do a great job of expressing what most of us feel.
I would look at the stress as an investment in your future. You paid the price, but as you said, you’ll go into your Drs appointment with the ability to have a high level discussion, and in the final analysis, be your own advocate and make your own decision.
As you know, I’m keenly following your process, as I may be following you down the path soon.
Good luck with the appointment
Thanks for your comment. Though I didn’t express it in my post, I actually have thought of the last few months as a short-term sacrifice that would hopefully result in a long-term gain. Despite that, there were a couple of days last week where it took pretty much everything I had to be at work. Fortunately, I seem to have moved beyond that for now.
I think one of the most frustrating aspects of this disease is the lack of clear choices, especially when one figures in quality of life.
Despite that I believe you’re building a store of knowledge, sometimes conflicting, that will serve you very well when decisions do need to be made. You will be able to honestly say you gathered all the data you could. Humans are actually quite good at decision making with incomplete and conflicting information. You’ve made major inroads in reducing how incomplete it is. I’m sure you’ll feel good about whatever decision you make. Your only real risk IMHO is a doctor who is so bent on treating that he minimizes the severity of side effects.
Your point about a pushy doctor is well-taken. So far, with all the urologists that I’ve seen at the VA, I’ve not encountered that. I’ll probably ask for a referral to a radiation oncologist during my appointment in April, and that’s something that I’m not looking forward to. It signals the next real step down the path and, as you said, you don’t know how pushy he or she may be.
It’s interesting that so many who talk about options do so purely from a statistical point of view and downplay the impact of side effects on quality of life.
Hopefully, you will not need to decide for some time, and you can amass sufficient information to make the right call that works for you. As time goes by more options may become available, but they will not have clear data either.
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