Patients Shouldn't Have To Ask

 

Let me preface my post by saying that all of my doctors are compassionate, knowledgeable, and caring people. 

I scheduled an appointment with my urologist, the first one with him since my cancer treatments ended, the anti-hormone drug was completely out of my system, and the temporary side effects of radiation were gone. This will be a reality check about what changes in my body I may have to live with. My urologist asks – “What questions do you have?”

I think there is a better approach, and I think it’s important because my questions are limited to what I know to ask about. I’d rather be entertained by his fishing expedition even if I don’t know why he’s asking about certain things. I figure they’re diagnostic.

My urologist probably has a list of common and potential aftereffects that men get from the prostate cancer therapies I went through, and he should go down that list. The reason why I think this would be helpful is that I may not know that some symptoms indicate a problem. After going over his list, THEN he can ask if I have any concerns. My oncologist does use a checklist.

Having me start by asking the questions presupposes that I know what questions to ask. (If this is the first time I’m meeting a doctor, then yes, ask why I want to see them and then listen to my story.)

Because hormone therapy is notorious for messing with sexual functioning by taking away one’s testosterone, a good question for any urologist to ask is – How is your libido? And because he can see in my medical file that my prostate and seminal vesicles were radiated, other questions would be – Do you have any erectile dysfunction? Are you able to climax? 

He can offer suggestions for what I can do to improve the situations, and he can be honest and let me know if my sex life is probably over and I have to emotionally come to terms with this loss. (My cuddle life is not affected.) I find percentages helpful in understanding that I haven’t been singled out. If 20% of prostate cancer men end up in my situation, knowing I have company mentally helps.

While I appreciate doctors being reactive and responding to what I bring up, I’d also like them to be preventative and ask their questions so that we can stop problems I don’t know about from developing.

On a similar matter, while glancing over last month’s Progress Summary from my oncologist, I noticed that on the Problem List, there are two entries – prostate cancer and the CHEK2 mutation from my somatic molecular test. I don’t recall discussing the results of this test, other than hearing that the blood component was fine, but the tissue sample from my biopsy was too degraded to test. 

I’d been wondering for a year about the CHEK2 because my genetic test did not indicate I had any cancer mutations, but the somatic test said my mutation had a VAF 1.0%. Is 1.0% a significant number? I don’t know. If it’s an important finding, we should have discussed it. If the number falls into the incidental range, I could see not bringing it up, but then why is it on the problem list? Meanwhile, my lymphocytes continue to be low two years later, but this doesn’t show up on my problem list. Why not? I don’t know.

The Internet informs me the CHEK2 mutation indicates that, besides prostate cancer, I have a significantly higher risk of developing breast, colorectal, and other cancers. While this mutation is not as aggressive as a BRCA1 or BRCA2 mutations, how much of a risk is there? I also want to know what symptoms to watch for. I will email my onco and ask what this means, but then I’m the one asking the questions again, instead of my doctor providing the information.

The online info recommends that I talk to a genetics counselor if I have this mutation, and it encourages being proactive about a prevention and screening program. How do I do this? The mutation is probably not inherited, and my number may be a low enough that it’s incidental. So, is my number high or low?

When I’m the one asking the questions, it makes me feel like I am the only person monitoring my health, and that my various specialists exist only to answer my questions. This doesn’t feel like the ideal way to practice medicine. However, my primary doctor is great. When she notices a problem, she lets me know and sets something up to deal with it.

I want to see the whole picture, not just the parts that I’m aware of. I want doctors to bombard ME with questions, and educate me on how all my pieces fit together. 

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Yosemite is an ecosystem like one’s body. While we can get caught up in marveling at specific features like Half Dome, the Merced River, and Bridalveil Fall, each part of the valley is integral to the health of the entire valley and supports the rest.

© 2026 Mark Liebenow