As I prepare to speak about proton therapy with a group of fellow prostate cancer survivors in Greenville, South Carolina I find myself wondering: What can I hope to accomplish by introducing proton therapy to men who have already been treated with surgery, brachytherapy/seeds, conventional radiation/IMRT, hormones, chemo, or some other therapy? Presenting another option now seems a bit like offering an updated restaurant menu to a diner who has already finished their meal.
The easy answer
… I find myself wondering: What can I hope to accomplish by introducing proton therapy to men who have already been treated …
I could simply assume that most men who have had prostate cancer are naturally interested in all related matters, and that may well be true. Many of us do indeed want to continue learning about advancements in the treatment of this and other cancers—even if it no longer applies directly to us. We like to learn, and because prostate cancer has touched our lives it is of continuing interest.
Well, that’s fine, but it’s a very academic motive and I am not a professor of proton. My mission is not to teach proton classes, and frankly I doubt the US TOO members in Greenville would enroll in such a class. So why would they want to hear me speak about it?
The daily special
Continuing the restaurant analogy, imagine your server returning to your table to describe the unlisted daily specials after you have eaten. “Oh, by the way, our special today is Pasta Perfecto. Sorry I forgot to tell you, but I guess it’s too late now … you might have liked it!” This would be absurd and ridiculous.
And so it is with proton. What reaction am I hoping for in Greenville by presenting a possibly new treatment option now? Am I seeking a whoa, I’m sure glad I didn’t do THAT! response? Certainly not. Worse yet, what if their reaction is hey, why didn’t anyone tell me about proton therapy? I would have really wanted to consider that option! Not so good either.
Proton not on the menu
Just as restaurants may not include all available items on the regular menu, proton therapy is usually not on the standard list of treatment options. That’s right, not sometimes—usually. 
Despite its unique characteristics which reduce radiation exposure to healthy tissue, it’s left off the list. Even though reduced exposure means a lower risk of secondary cancers and side effects, proton—available since way back in the 1990s and increasingly available today—is still not even on the menu. Go figure.
We can wonder why this is the case, but the reason really doesn’t matter much. We have to accept the sad truth that a prostate cancer patient’s doctor might not even mention proton. If the doctor doesn’t mention it and the patient does not discover it through their own research, who will tell them about proton therapy?
We will.
No silver bullet
Proton is not perfect—there are pros and cons—and the same is true of every other viable treatment for prostate cancer. Surgery can work. Brachytherapy (seed implants) can work. Conventional radiation (IMRT) can work. Hormone therapy can work. Chemotherapy can work. Proton therapy can work. And so on. None of these are the silver bullet we seek, but should any go unmentioned?
I don’t claim that proton is for everybody, so in that sense I am not a proton advocate, but I am certainly not a proton adversary. To be more exact, I am an information advocate, and people often do need help finding relevant helpful information at critical times. As it turns out, we prostate cancer survivors have an important role in making that happen.
Survivors are Advisors
Newly diagnosed men view us survivors as seasoned veterans who know the ropes. Before making a final decision about how to proceed, they will often want to talk with us. Just as I consulted a number of men before I chose proton therapy, many have spoken with me during their decision-making process.
… patients frankly give me too much power. They seem to feel that because we are in the same club they can trust me, maybe even more than their doctor …
I have noticed that some of those patients frankly give me too much power. They seem to feel that because we are in the same club they can trust me, maybe even more than their doctor. They do ask me how I feel about my choice of proton therapy, as expected. But they also quite bluntly ask what I think they should do, and whether I agree with their doctor’s recommendation.
I have not the knowledge, patient data, or medical expertise to offer responsible advice on the best course of action for another man. When asked, I tell them only they can make that decision. I even refuse to answer the “if you were me what would you do” variation of the same question. It is simply not for me to say.
Put proton on the menu
Short of presuming to tell them what they should do, we can still play an important and helpful role. 
We can provide information—especially important missing information. In that role, we should mention and be able to explain the proton option clearly, especially because the doctor may not have done so.
There is power in the relationship a prostate cancer veteran has with a newbie, and it must be taken seriously and used cautiously. We cannot tell them what they should do, but we can definitely say this with confidence: Proton therapy should be considered along with any other options their doctors suggest. We can make sure proton is at least on their list.
… we can definitely say this with confidence: Proton therapy should be considered along with other options …
So at last I have identified the reason for my trip to Greenville. The US TOO group needs to know about proton therapy so they can understand its benefits and include it on their list of options when talking with next guys in line. I need to talk about proton therapy with them not so much for the survivors who have already been treated, but for the men they will guide and influence.
Our superpower is INFLUENCE
We did not ask for the power to influence, but as survivors we are entrusted with it. In a single conversation we can play a significant role helping someone make a difficult decision that will affect their health and quality of life. Like it or not, what we say will likely have significant influence.
People deserve to know about proton therapy for their consideration along with the other options. We can use our superpower to make that happen.
If you have the opportunity to speak about proton therapy to an interested group, do it. If you would like me to speak to your group about proton therapy or have comments to share, please contact me here.
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