Stories of Lung Cancer

We tell ourselves stories in order to live.     ~Joan Didion

August 2026! It’s Time for a Cancer Check-In

summer sky

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The Waiting Room Surprise

What have you noticed lately? I mean, something that made you stop (at least mentally) and say, huh, or whoa.

Did you think of a moment yet?

Mine came a few days ago, at my 4-month check-in with Dr. Oncology. It was a glorious Portland day. Sunny, blue sky, hot but not so much that you’d suffer. So I rode my bike to the medical center. I arrived at 12:50– 10 whole minutes early– and I was tickled: I’d have enough time to cool down so she wouldn’t have to deal with my sweaty sweatness.

Imagine my surprise to discover that 1:00 was my check-in time and not my appointment time. The docs have started emphasizing the arrival time that’s 15 minutes or more earlier than the actual appointment. Great for them, a real pain for patients. That day it meant I was 30 minutes ahead of my actual appointment. Although everything is better with coffee, I quashed the idea of heading for the downstairs cafe. Better to do the grownup thing: grab an out-of-the-way chair, mind my ps and qs, and eat my lunch.

I stood to the side of the check-in desk and scanned the expansive waiting room for a chair. As waiting rooms go, it’s lovely. A huge bank of windows looks over the hills that rise slowly to meet Mt. Hood. I always savor that view. That moment was when it hit me.

I saw grey heads, bent men and women, long-suffering in their wheelchairs. Here and there, a trim woman, engrossed in a book or phone. Men, for the most part alone. A lot of men. Some looking resolute, others tired or grey. Prostate cancer, I thought. And me in my cycling togs. Sweat-slicked hair not yet gone to gray, I juggled a bike helmet, water bottle and a full handlebar bag, tire pump on the verge of tipping out. You can’t leave anything on a bike when you lock it, even at a hospital.

I remember thinking I might be the only one who’d be leaving the center on a bike. I remember shards of guilt that I sternly tried to meld into gratitude. I remember taking refuge in the practical: I had a quart-size zip-top bag stuffed with leftover stir-fry that I needed to eat so I didn’t collapse of low blood sugar in the exam room.

I remembered that a reality check is valuable. They weren’t just patients. They were me.

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Advocacy, Advocacy, Advocacy. Or, The Joys of Being on Hold

I had a medical Thing in July. Not cancer, but also not eating much for about 2 weeks. During the first year, I played at being miffed because I didn’t lose weight while on chemo. (You have to admit that it was a little unfair.) Then comes July this year: not even on chemo, not even seriously ill (well, at least we hoped) and boom 10 pounds have gone missing. Surprise!

I got an order for a STAT CT with contrast. Being the obedient patient that I am, I headed right for the phone. Plus, the STAT part of it impressed me.

Screenshot: definition of STAT: With no delay, immediate response

So began the usual procedure. Call. Hold. Hold some more. (Have I mentioned the hold music for my medical institution is the same as Zion National Park’s? Discovering that several years ago was almost enough to have me change our vacation. But I digress.) Eventually a human arrived on the line. Uh, they weren’t scheduling;  their machines were down.

What do you even say to that? After a beat, I said, “You’re not kidding, are you.” No, came the grim reply. They could transfer me to another hospital where I’ve had CTs done before. A fine option, given the espresso-ice cream shop.2 miles away from it. That scheduler got on the line.

“It’s a STAT order,” I said helpfully. “Uh-huh,” she said. Then she chanted, “First available CT with contrast…” and named a date five days from then. “Uh, that’s your idea of STAT?” I asked, trying to sound like I was teasing. The strain in her voice told me it hadn’t worked. They were fielding tons of calls to cover the medical center. “Wow,” I said. “That’s a pain for you and me. What other hospitals can we check? I don’t mind traveling.”

I’ve blocked details of the next 20 minutes from my memory. Suffice it to say, the other appointments made five days hence look like time travel. I reluctantly took the appointment. The ragged pauses on my end of the line must have caught her attention. (I mean, I was interested in eating real food again.) She scheduled the appointment, then named three free-standing imaging centers (not in hospitals) that were in their system. I groaned to myself– the closest one was 45 minutes away. “But it is near a shopping mall,” she pointed out. I told her I’d call to cancel if I wrangled something there.

But somewhere in between all the holding tunes, an alarm started to sound, and it slowly grew louder.

Go with me here. I had my periodic “how’re you doing, lungs?” scans already scheduled for August. Those scans called for contrast. The July scans also called for contrast. The contrast, which is iodine-based, can strain the kidneys. The July-August contrast combo started feeling like a plan to deliver a hard one-two punch to those organs.

Suddenly I realized, I could pivot. After all, Dr. Oncology had increased the space between screenings by a month. Adding a lung screening to the one Dr. Primary Care wanted in July would simply keep me on a traditional quarterly schedule. A no-brainer, right?

Don’t forget, there was still the matter of wrangling a truly STAT test from another center. I couldn’t just cancel the STAT order for the hospital-based scan (even though it was STAT in name only.)

All I had to do was get someone to combine orders for two different CT scans from two different providers who worked in two different divisions of the same organization. Oh, I was also trying to reach my primary care person to find out if I could advance to eating mushy foods instead of just liquids.

It was hot, so hot, and a Friday afternoon, as I started to piece the details together. I don’t remember why it was so important– a lot’s happened since then– but I had a real feeling of urgency. (I think I was hungry.)

I could get through to the cancer scheduling center about combining scans, but Dr. Oncology was out and they’d have to send her a note about writing an actual order. Dr. Primary Care had invested in that hold music and was playing it for all it was worth. Finally, I connected with a scheduler at one of the free-standing facilities and it was like a miracle. I explained the situation– two scans with contrast, potentially sad kidneys, a STAT order with a leisurely wait time, and shazam. She checked my chart, saw the orders, and said, “Oh, both orders are already in the system– they can just do them together.”

What? I had to check my hearing. “So, because both orders are in the system, the CT person can just combine them?” Yes indeedy.

I still didn’t trust what I was hearing. “Dr. Oncology’s office has already said it’d be fine to do the scan early. Could you please make a note on my chart about doing both orders in one visit?” She assured me she would, made a truly STAT appointment and wished me a great afternoon.

One scan, one round of contrast, two test birds with one stone.

And the lived experience of being a small ball, ping-ponging between hold systems.

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Shortest Visit in the History of My Cancer

At last week’s check-in with Dr. Oncology, she remarked on the early CT. I told her, flat-out, there was no way I was having two back-to-back CTs with contrast. She acknowledged that was probably a good call. Then came the review of Things– Pain? Coughing? Nausea or vomiting? –and the inevitable draw of several vials of blood.

The most notable aspect of the conversation for me: I got the usually stoic academic clinician to belly laugh. I was angling for an indictment of Tagrisso in some tiny balance and memory blips I’d noticed. When she said no indictment was possible, I might have grumbled, “So much for this visit.” She positively guffawed.

Turns out balance and blips may be a possible effect from the gamma knife surgery I had lo so many years ago. I should pay attention and call if things seem to be getting worse, she said, switching from her Scientist Voice to her Voice of Smarmy Reassurance, “because we would want to take care of it right away.” Meanwhile, I have a brain MRI in September and the usual debrief with Dr. Radiology, so I’ll bring it up then.

It’s grand to be a boring patient. A still-learning boring patient, I might add.

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More About Kidneys Than You Ever Wanted to Learn

You’d think someone in the PCP’s office might have checked to see what kind of testing I had on tap. You’d think they’d have shown some curiosity about my poor kidneys. Nope. That fell to me. How many people would just follow doctor’s orders without thinking about what they were being asked to do and how it might affect their long-term health? This is a level of self-care and self-advocacy we need to emphasize for ourselves and our companions on this road.

Dr. Oncology mentioned that my kidney and liver functions weren’t back yet, but she’d review them when they were. Needless to say, I was keenly aware when, later that day, I received a message that I had test results in my chart. I paid special attention to readings related to kidney function.

What I saw: I’m in normal ranges, but at the bottom of them.

Then came the burning question: what can a person do to raise their kidney function? Because I had no real idea of how to do a standard internet search for that, I went to Anthropic’s AI tool, Claude, with this prompt: List as many ways as possible to increase kidney function.

What resulted was a 28+ page “conversation.” (By the way, it was Claude’s opinion that I should say that’s an estimate of the number of pages, since I didn’t have it render the dialogue into actual pages.)

Claude’s Review of the Above Paragraph:

Screenshot of Anthropic AI's comment

Anyway.

Since I ended up weaving in details of my personal medical history, I’m not going to make the whole “conversation” available, but what follows are verbatim chunks that give what I think is the key information.

Note: I ain’t no scientist, so I can’t evaluate whether Claude got the details mostly right. But I will say that I’d rather take Claude’s synthesis over the summary of a random schmo in a discussion board on the internet….

TLDR: Kidneys aren’t like livers– they don’t regenerate. So you have to work to preserve as much function as you can.

AI-Assisted Synthesis of Information About Kidney Function (Claude)

  • Platinum chemotherapy agents (cisplatin especially, carboplatin to a lesser degree) are known to cause lasting kidney function decline even years after treatment ends.
  • Frequent contrast-enhanced CT scans for cancer surveillance add cumulative kidney stress.

Additionally,

Osimertinib inhibits kidney transporters called OCT2 and MATE1, which normally help actively secrete creatinine into urine. When these transporters are inhibited, elevated serum creatinine levels can affect eGFR calculations without reflecting significant changes in actual glomerular filtration or kidney function. This is sometimes called “pseudo-kidney injury” in the literature — the lab value moves, but true filtration capacity may not have changed nearly as much.

This isn’t rare or subtle either. In one retrospective study of 130 NSCLC patients on osimertinib, serum creatinine and eGFR worsened gradually during treatment, with over half the patients showing a worsening severity grade for creatinine. Critically, creatinine and eGFR both improved back toward baseline after the drug was stopped — strong evidence the effect is drug-related and reversible, not progressive kidney damage.

And,

Cisplatin is one of the most well-established nephrotoxic chemotherapy agents that exists. Even a “standard” 6-session course is a classic, well-documented cause of chronic kidney damage that:

    • Often causes an acute drop in kidney function during treatment
    • Can leave **permanent, partial loss of nephron function** even after the acute injury resolves — a lasting reduction in kidney function is common and well-documented, though the exact magnitude varies widely across studies
    • Damage is cumulative and dose-dependent, and the tubules (not just the filtering units) are affected, which can also contribute to electrolyte handling issues (magnesium wasting is a classic finding)
    • This effect is typically **stable long-term**, not progressive — meaning it usually doesn’t keep getting worse years later, but it doesn’t reverse either

Iodinated CT contrast carries a real, if often overstated, risk of contrast-induced nephropathy, generally higher risk when baseline eGFR is already reduced (as yours may be) — repeated exposure over years adds cumulative low-grade risk

For your reading pleasure, here are Claude’s sources.

Osimertinib / pseudo-AKI:

Ilyas, M., Nguyen, J., Shettigar, S., LeClaire, J., Mathavan, A., Mathavan, A., & Shah, C. V. (2026). Incidence and magnitude of pseudo-decrease in kidney function with oral epidermal growth factor inhibitor osimertinib. Kidney Medicine, 8(6), Article 101366. https://doi.org/10.1016/j.xkme.2026.101366

Rodrigues, N., & Shah, C. V. (2025). Pseudo–acute kidney injury with tyrosine kinase inhibitors: Utility of the creatinine–to–cystatin C ratio. Kidney International Reports, 11(3), Article 103733. https://doi.org/10.1016/j.ekir.2025.103733

Miyazaki, Y., Iwama, E., et al. (2025). Renal dysfunction during osimertinib treatment in patients with non–small cell lung cancer positive for EGFR mutations. Respiratory Investigation, 63(3), 438–443. https://doi.org/10.1016/j.resinv.2025.03.015

Cisplatin nephrotoxicity:

Bhat, Z. Y., Cadnapaphornchai, P., Ginsburg, K., Sivagnanam, M., Chopra, S., Treadway, C. K., Lin, H.-S., Yoo, G., Sukari, A., & Doshi, M. D. (2015). Understanding the risk factors and long-term consequences of cisplatin-associated acute kidney injury: An observational cohort study. PLOS ONE, 10(11), Article e0142225. https://doi.org/10.1371/journal.pone.0142225

Schofield, J., Harcus, M., Pizer, B., Jorgensen, A., & McWilliam, S. (2024). Long-term cisplatin nephrotoxicity after childhood cancer: A systematic review and meta-analysis. Pediatric Nephrology, 39(3), 699–710. https://doi.org/10.1007/s00467-023-06149-9

Iodinated contrast:

Mehdi, A., Taliercio, J. J., & Nakhoul, G. (2020). Contrast media in patients with kidney disease: An update. Cleveland Clinic Journal of Medicine, 87(11), 683–694. https://doi.org/10.3949/ccjm.87a.20015

RSNA. (2020, January 22). Groups publish statements on CT contrast use in patients with kidney disease. RSNA News. https://www.rsna.org/news/2020/january/contrast-media-consensus-statement

Thanks

Thanks for reading. Here’s hoping you and your kidneys are well and holding the world of medicine– and all else– to account.

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Sun rising at the end of a dock.

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