Adenoid Cystic Carcinoma and What I Wish We'd Known: Our Journey With Dave's Diagnosis

Darla in the Desert: hard‑earned lessons from life, the internet, and a desert that melts your patience first. Send ice!

Some conversations stay with you. I've had a couple recently with friends navigating scary medical news, and I kept saying the same things — things I wish someone had told us years ago. Time to tell our side more clearly.

Dave was diagnosed with adenoid cystic carcinoma — ACC — originating in the maxillary sinus. Treatment was successful, and we had a couple of good years. Then whack-a-mole. It cropped up in the lungs — which is common with ACC. It's rare, slow-moving, and doesn't always play by the rules. It's not contagious, and no, it's not parasitic. The imaging makes that clear.

Here's what I'd do differently.

THE PET SCAN SHOULD HAVE HAPPENED SOONER. An FDG-PET is the scan that "lights up" active cancer. We didn't get one until this year. In my opinion, that should have been done much earlier.

PRESS FOR THE BIOPSY. Dave's first came back negative — nodule too small to catch. By the time it was large enough to biopsy again, cryoablation was off the table. When I asked, I was told it was already too large. What I've since learned: newer studies suggest cryoablation could be offered at the time of biopsy, while the nodule is accessible. Nobody mentioned that. In my opinion, it should have been. But I'm not a doctor, and I don't play one on television — I'm just a caregiver who learned too late to ask the right questions.

A bronchial biopsy, by the way, is the best way to get lung tissue. Also learned that after the fact.

ON TREATMENT — our oncologist was conservative, partly because of Dave's Parkinson's, and I understand that. The first round of hormone reduction therapy showed promise on the biopsied tissue. Nope. Nodes grew. More smaller cells appeared. We saw three specialists at a nationally recognized group — good doctors — but coordinating care an hour away across multiple providers is its own full-time job. In hindsight, we needed a more aggressive early approach. My opinion, not a verdict.

We have great respect for Banner Health — for many patients they're an excellent choice. But when we got to CITY OF HOPE, the difference was immediate. Same building, same team — pulmonologist and oncologist actually talking to each other. Up to four appointments in a three-hour window. One trip, done. Their NCI rating is "Exceptional" — the highest given, top tier of all NCI-designated comprehensive cancer centers in the country. For our situation, with a rare cancer and a complex co-diagnosis, COH was the better fit. Only you know yours.

ON IVERMECTIN — people ask.

There's early lab research but no conclusive human trials specific to ACC. After our first treatment round, I want conclusive. I'm not chasing promising

We're cautious for a specific reason — some treatments that seem promising, like hyperbaric oxygen chambers, can actually make ACC more aggressive. We're not willing to experiment with unknowns when the downside could be feeding the very thing we're fighting.

🌲 SIDEBAR: THINGS THAT COST NOTHING AND MIGHT ACTUALLY HELP 🌲

Forest bathing (shinrin-yoku) has been studied seriously for over two decades. Two hours in forest air boosts Natural Killer cell activity — the cells that fight abnormal cells, including cancer. In one landmark study that boost was roughly 50%, and it lasted more than 30 days. Trees release compounds called phytoncides that trigger the immune response when we breathe them in.

Dave used to be out in the fruit trees daily. Stress has cut into that. Fruit trees aren't a forest, and I won't pretend they deliver the same punch. But if you're earlier in this journey — get to an actual forest once a week. Two hours. This isn't a replacement for your medical treatment — it's something you do alongside it. Talk to your oncologist. It costs nothing, has no side effects, and the research is real.

While you're at it — green tea and a good extra virgin olive oil are two of the most studied anti-inflammatory foods on the planet. EGCG in green tea has even been studied specifically on adenoid cystic carcinoma cells in the lab. High-polyphenol EVOO works the same anti-inflammatory pathway. Neither one is a cure. Both are worth adding to your daily routine, especially if you're in a caregiving or prevention mindset. We've written about both — see the links below.

Trees once a week. Green tea daily. A drizzle of good olive oil. We wish we'd leaned in sooner — not because it would have guaranteed anything, but because it costs almost nothing. Nobody should read this and feel like they missed a cure. We just know we'd have felt better trying.

A few things we actually use and recommend:

🚴 Recumbent Exercise Bike — Dave's on his regularly. Low impact, easy on Parkinson's balance issues, and he genuinely feels better after. That's not nothing.

🛸 Mini Rebounder Trampoline — The lymphatic research on this one is surprisingly solid. Your lymphatic system has no pump — it moves only when YOU move. Rebounding is one of the most efficient ways to get it flowing. Studies report lymph flow increases of 15-30x. NASA called it 68% more efficient than jogging. Worth talking to your oncologist about.

☕ FGO Organic Green Tea, 100 Count — independently tested by Mamavation, non-detect for PFAS on both tea leaves and bags. Clean, affordable, easy daily habit.

🫒 PJ KABOS Organic Greek Extra Virgin Olive Oil — this is the one we actually use. 699mg/kg polyphenols, USDA Organic, single origin from Ancient Olympia, cold extracted, lab tested. Not the cheap stuff. Worth every penny.

Disclosure: I provide links to products I personally use and trust. As an Amazon Associate I earn a small commission from qualifying purchases — at no extra cost to you. This helps keep the blog running and ad-free. 💙

If this resonated, you might also want to read:
We Took a Week Off: Family, Medical Appointments, and What's Coming Next
The Anti-Inflammatory Aisle — What's Actually Worth Buying
Sip Smart: Dark Chocolate, Brain Brew, and the Science Behind the Sip

We're still in this. More posts to come.

— Darla in the Desert

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