Absurd Conversations, Lungs

Overall, Cam's doing much better in the last couple of weeks—getting past the nausea, eating a more varied diet, regaining some strength and stamina. And we're profoundly grateful for your unending love and support.

But February certainly had some Absurd Conversations that had my head spinning . . .

Absurd Conversation 1
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Lung Oncologist: (reading through Cam's recent medical history) This sounds like a nightmare.

Us: [Nothing.]

Lung Oncologist: So the fluid that was taken out of your lung cavity recently . . . we have to assume those were probably malignant cells.

15 minutes of discussion later . . .

Lung Oncologist: If it is malignant, we would need tissue—a biopsy—to confirm it. I can't put you through that surgery right now. [He describes minimally three days in the hospital for a surgery that would include an apparatus to separate ribs for obtaining a tissue sample.] 

He continues, And if it is malignant, we wouldn't be able to treat it anyway. There just isn't any kind of chemotherapy that I can give you because of your kidney damage.

And another 15 minutes of discussion later . . .

Lung Oncologist: This fluid—I think it's probably okay.

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Krisha's Take on Absurd Conversation 1

How can the doctor go from what he said at the beginning, to what he said at the end of the appointment?! I wrote it all down in my notes! Frustrated comment, frustrated comment.

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Cam's Take on Absurd Conversation 1

The doctor's figuring things out as he goes, too. He might need to talk through things to get to his conclusions.

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Filling in the Medical Gaps for Absurd Conversation 1

In mid-January, Cam had almost a liter of fluid removed from his lung cavity. The next time you're at the store, look at a one-liter water bottle. It's enough fluid to worry a wife.

Ten days after having the first liter removed, he had a follow-up chest x-ray, which revealed that the fluid had returned. 

So, in late January, while he was in the UCLA hospital for infection detection, he had another 3/4 of a liter of fluid "tapped."  That means "taken out via a long needle that goes into his back and then into his lung cavity."

What is most disconcerting about the fluid: the lab results for the fluid came back as "atypical mesothelial cells."

Now, the lab results did not say "mesotheliOMA" (good), but they did say EXACTLY the same thing that initial lab results had said about his appendix last June. And we know where that led. Are you starting to see why I've been freaked out?

So how did doctors determine last June that it was mesothelioma? 

The lab here at Cedars-Sinai Medical Center detected "atypical mesothelial cells" in his appendix biopsy. The Cedars lab sent the appendix slides to an expert lab in Canada. The Canadian lab determined it was mesothelioma. 

And as we moved along in the process of finding a doctor to treat Cam, a few other expert labs in the U.S. confirmed the diagnosis.

Why can't doctors just send the fluid from his lungs to an expert lab again?

Good question. I asked the same thing. To lots of doctors. I even asked the expert in Canada who first diagnosed Cam's cancer from a tissue slide. 

Apparently, the problem is that with his appendix, there was tissue to examine. Now there's just fluid. Supposedly, there aren't enough cells in fluid to determine what's going on.

What else would cause the fluid?

Perhaps just a reactive process to all the stuff that had been done to Cam's body. 

After all, he had a lot of surgical "stripping" and "work" done on his diaphragm. And his surgeon pumped the heated chemo in through the HOLE he'd created in Cam's diaphragm. 

Yes, not only did Cam get the hot chemo wash in his abdomen—as we'd expected—he ALSO got it in his lung cavity. ("No extra charge," Dr. Levine joked.)

By the way, mesothelioma is usually in the lungs. Cam's, of course, is in the peritoneum (abdomen lining). Peritoneal mesothelioma accounts for only 10% of all mesothelioma cases each year—which makes for about 200 cases of peritoneal meso annually. Frickin-frackin-rare bugger. Because meso is rare, there aren't good treatments, the way there are for common cancers.

But it had never occurred to me in all our months of research that peritoneal mesothelioma (abdomen) could become pleural mesothelioma (lung). I thought they were different "types" entirely—I was worried about what we were dealing with, not what else it could become. But of course, since the disease travels through its own fluid, one can lead to the other.

Anyway, because Dr. Levine did the surgical work to the diaphragm and put the hot chemo wash in the lung cavity as well as the abdominal cavity, it obviously makes my antennae twitch when there's mysterious fluid building up in the lung cavity. 

Because mesothelioma does love to make fluid and mucus, in addition to tumors. It's multi-talented like that.  

So what next?

Watch and Wait. 

As the expert in Canada told me, "If it's a reactive process, the fluid will clear up soon enough. If it's mesothelioma, unfortunately, it will show itself soon enough."

Cam has a follow-up appointment with the lung oncologist today (March 5). Cam will have another chest x-ray. It's been almost four weeks since his last chest x-ray, which revealed about 300 ml of fluid (about a cup and a half), but that's not enough fluid to go after. The risks of "tapping" that "small" amount of fluid outweigh the benefits. 

What are we praying for?

We're praying that today's x-ray shows NO FLUID in Cam's lung cavity. And that the blood labs show improvement for his kidneys.

Okay. Here we go  . . . off to the hospital—