When Cancer Comes Calling – Book Three: Soundings
Self-Advocacy – Sorry, Not Sorry
David R. Weiss – September 15, 2025

I was raised to be polite, and my own temperament has led me to be a mostly conflict-avoidant people-pleaser, especially in person. That often comes across as “pleasant and easy-going,” and most of the time that’s fine, because there’s usually not so much at stake that it’s worth getting bent out of shape over. But sometimes the stakes are really high and then being overly agreeable can be to my own detriment. This was one of those times.

Last Friday I met with the medical oncologist (the doctor who will manage my cancer meds) on my care team. I didn’t pick him, my radiation oncologist (the doctor who will do my radiation treatments) did, and she considers him brilliant, and I trust her, so I’m happy to have him on my team. Except my first consultation with him felt a bit rushed and rocky, and I’ve learned by now that “rushed and rocky” is not helpful when my goal is to be the person guiding my own cancer care.

The ”rushed” part was unfortunate but understandable. His first opening for a full-hour consultation wasn’t until late September, and the reason for seeing him was to review a final medication choice that needed to be made as soon as possible in order to keep my radiation treatment on track. So, I was happy when my radiation oncologist called his office, and then his office called me and said they could get me in on September 8, even though it was only a 30-minute slot. They could do this because I’d seen him about a difference issue in the past, which allowed them to give me this shorter “returning patient” slot. I gratefully took it.

We did come to a clear decision about the medication in question, a second testosterone blocker only used in localized prostate cancer when the risk of it spreading is deemed “very high.” This doubling down on T-blockers is called a Total Testosterone Blockade, sometimes more vividly referred to as Testosterone Annihilation. (Oh joy.) It amplifies the effectiveness of radiation, but at the same time raises the risk of some pretty scary side effects. The fact that we came to a decision about this was good, but it didn’t offset the rocky part of the consultation.

I’ll never know how much the “rocky” part was a result of the “rushed” part. This doctor is native Indian; he got his medical degree in India, and his English has a crisp accent and a fast pace. You have to pay full attention to catch every word. Still, it was more than this. A couple things left me unsettled. I can’t afford to have such a central relationship on my care team as the weakest link. In fact, with my life on the line, I can’t afford any weak links on my team.

So, after reflecting on it for a couple of days, I entered “self-advocacy” mode and sent him a follow-up message using MyChart (the platform my health care system uses for patient-doctor messaging). I expect I’ll be permanently in self-advocacy mode from here on, because there’s just too much at stake to not be. Anyway, this is what I wrote … stretched out over two-and-a-half messages because MyChart has a very unforgiving word-count limit. My actual message is in italics below, with a handful of side comments along the way to help you understand the points I’m making.

After correcting a minor mistake in my visit summary about the date we’d decided on for me to start this new medication and asking a question about the labs he had ordered for me before our next visit, (both minor but essential self-advocacy steps in themselves), I went full force into self-advocacy:

Finally, I want to clarify a couple things. I appreciate the effort made to fit me into your busy schedule. I know we had only 30 minutes because I was given a “returning patient” slot even though this is a new concern and perhaps needed a bit more time for a fuller conversation. Because of the hard and fast word limits imposed by MyChart, I’ll put my thoughts in a couple additional messages.

[Additional message #1]

I want you to know that although I have no medical background, I do have two graduate degrees. I’m also a voracious reader and critical thinker. And I intend to be *fully engaged* in guiding my care. So, I need complete, clear, accurate information about my treatment options, likely side effects, and possible mitigation strategies—AND I need deep respect for my intelligence and agency. I count on you for all of this. It’s crucial to my care.

When I explained why I chose Orgovyx as my primary testosterone blocker, I gave three reasons. I noted that unlike Lupron [the T-blocker most often prescribed by doctors], Orgovyx is an oral daily medication that I could stop quickly if I found the side-effects of testosterone suppression [which are many] intolerable. And I said I understood it is both newer and more effective than Lupron. You replied almost off-hand that, like Lupron, Orgovyx was also an “agonist” and that the efficacy of all ADT [testosterone-blocking] drugs is similar across the board. The first statement is simply wrong; the second is at least questionable.

[To be clear, I have NO DOUBT that he knows Orgovyx is NOT an “agonist”—a term that describes the mechanism by which Lupron and several other ADT drugs block testosterone. To be truly mistaken about this would call into question his competency. I have no question about that! He simply misspoke. But I’m quite sure he misspoke because he wasn’t listening carefully to me. Because he wasn’t giving me due respect for having done my homework on these meds. His tone carried the message “I’m the doctor; don’t bother yourself with the details.” And I needed to call “BULLSHIT!” on that loud and clear. So I continued …]

As you surely know, Orgovyx is an *antagonist.* Same effect; different mechanism. And it seems to me that Orgovyx actually does have a better efficacy. There is no testosterone flare. [Agonists actually BOOST your testosterone for several weeks before suppressing it; not so with antagonists.] Per the HERO study [the definitive study that helped secure FDA approval for Orgovyx], Orgovyx lowers testosterone (T) faster and more effectively than Lupron:

91% of men had T <50 ng/dL by day 8 vs. 0% on Lupron; 99% of men had T <50 ng/dL by day 15 vs 12% on Lupron; and 99% of men had T <50 ng/dL by day 29 vs. 82% on Lupron. Thus, when I start radiation in early October, my testosterone will be very low (in fact, 95% of men on Orgovyx had T <20 ng/dL by day 29)—and will have been low for several weeks. In that same study, Orgovyx also more successfully kept T below 50 ng/dL through week 48 (97% vs 88% on Lupron). And 55% of men saw their testosterone return to 280+ ng/dL within 3 months.

You may disagree about whether these results constitute “better efficacy,” but then we *need* to have that conversation between us. It isn’t helpful for you to make a sweeping remark that does not teach me anything. I intend to beat this cancer—with a medical team that puts ME, not the disease, at center. A team that equips ME to be at the center of decision-making. –David

[Additional message #2]

When I said I was using supplements to support my health and my body’s cancer-fighting ability, your response was unhelpful and dismissive. [He had replied, rather patronizingly, that he didn’t put any stock in supplements, because he felt that simply eating a balanced diet provided everything necessary to good health. This not only underestimates the challenge of eating a balanced diet in a Western industrialized food system; it also dismisses knowledge about the benefits of plant-based medicinal supplements—some held by indigenous traditions and now confirmed by Western medicine.] I can respect your personal/professional opinion, but plenty of evidence-based literature [that is, peer-reviewed scientific studies published in medical journals] indicates supplements are a *reasonable* *thoughtful* option. So, I need you to respect my educated choices.

As I said, I am working with an integrative oncologist (an MD) to select supplements that support my overall health, strengthen my immune system—and don’t conflict with any of my prescription medications or other treatments. After reviewing my new meds with her on September 9, I’m discontinuing two supplements (and will likely replace them with others that don’t interact with my meds). I’ll update these on MyChart.

I’ve been on a steep learning curve since the severity of my cancer became clear to me in mid-June. I’m now an ardent self-advocate because our current medical model, despite all the “patient-centered” rhetoric, remains rife with disempowering dynamics.

This is a *partnership.* I welcome your medical expertise. You are brilliant in ways I am not. I need you to welcome *my* expertise—re: my values and goals for my treatment and my life. On these things I’m brilliant in ways you are not. Our *shared brilliance* is what matters. I can’t do this without you. But I can’t do it *with* you—unless you make the room (and the respect) for me in our conversations. Only that will allow me to make thoughtful informed choices about my care.

And that will require more complete, accurate, respectful communication than I experienced during our initial consultation on September 8. I hope we can approach the October 8 appointment with a better understanding of what I need and expect from you.

Sincerely, David

Too much? I hope not. I suppose we’ll find out on October 8 (or sooner, if he replies to my message.) If I need to find another medical oncologist, I will. Because I cannot—and will not—have one that doesn’t listen to me or talk with me. There’s no doubt in my mind that he’s a brilliant doctor and could be a real asset to my care team. But only if he makes his brilliance useful to me. And I don’t have the time to take a wait-and-see approach about that.

Self-advocacy can seem brazen, almost rude. But if it requires a breach of politeness to determine whether he can align himself with my needs and expectations, well, fighting cancer on my terms is worth it. So, sorry. Not sorry.

I’ve been chronicling my prostate cancer journey since my diagnosis in January 2025.
Find my first set of blogs (January-June 2025) in a pdf here: When Cancer Comes Calling: Innocence.
Find my second set of blogs (July-August 2025) in a pdf here: When Cancer Comes Calling: Awakening.
This essay is the first one in my third set (September 2025 and beyond): When Cancer Comes Calling: Soundings.

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David Weiss is a theologian, writer, poet and hymnist, “writing into the whirlwind” of contemporary challenges, joys, and sorrows around climate crisis, sexuality, justice, peace, and family. Reach him at drw59mn@gmail.com. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in Writing into the Whirlwind atwww.patreon.com/fullfrontalfaith.