For 2 months, have had Clubbed Nails, Shortness of Breath, Cough. Lung cancer? - 1289641

Hi Judy,

Thanks for your response.

I actually did my CT scans under the orders of a pulmonologist, who screened for every autoimmune and interstitial lung disease that fit my Restrictive Breathing pattern. Basically, with the combination of blood tests and the CTs, we confidently ruled out autoimmune and interstitial lung diseases. This basically just leaves asthma, COPD, and lung cancer, but asthma and COPD don't follow a Restrictive Breathing pattern.

So the only thing left on the table is LC, because it's the only one which doesn't have a corresponding blood test "double-check" like the autoimmune and interstitial diseases.

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To get a second opinion, I have an appt with a pulmonologist this week, so that's getting underway. I think it's odd that I have all the signs of symptomatic lung cancer, but the CT scans didn't show anything.

If you asked me whether I thought I had LC before the CT scans, I would have almost certainly said yes. I guess now I'm trying to figure out what sort of LC presents with "invisible" tumors.

In your experience, how often has this 'false negative' occurred with symptomatic people?

Out of curiosity, how large were your original tumors? Were they picked up on CT scans?

Cheers,
Parit

Hi Jim,

Thanks for responding! Like I describe in my reply to Judy, the only thing left on the table is lung cancer. I'm getting a second opinion to see if there's anything else we can do to get whatever I have fixed ASAP.

I understand that for my age, cancer itself isn't that prevalent, let along lung cancer, especially in a non-smoking lifestyle. In a way, that makes me more worried, because I don't want to be that one in a million young adults who has lung cancer. It's not like one of the more common young adult cancers like lymphoma, etc. where doctors and my peers haven't seen only a handful of cases.

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I know that my Noncontrast HRCT had 2.5 mm slice thickness/124 slices total, and my Contrast CT had about 2.0 mm slices/118 slices total. And these were performed on pretty newly built (2014) machines. I'm not sure what sort of tumors would be missed that are > 3 mm in size that are also symptomatic.

I guess it's definitely possible that my lungs are riddled with a slew of 1 mm tumors or something, so that's why I'm still worried.

In your experience, is there a certain type of lung cancer/location of tumor/size that tends to be more "invisible" than others?

Cheers,
Parit

Hi guys,

Thank you for all your input. I discussed with my GP and he got me evaluated by a cardiologist with a stress-echocardiogram. Turns out the heart looks ok and seems to work fine.

Anyway, I got a second pulmonologist's opinion, and he repeated the Pulmonary Function Testing, but we got roughly the same results/values as before showing "Restriction". He said that my original pulmonary specialist did a thorough job evaluating all the causes of Restrictive Lung Disease. All of those disease have corresponding blood markers plus CT indicators, so there's an automatic double-check included. Those are confidently ruled out by negative bloodwork and CT.

Unfortunately for lung cancer, there's no non-invasive double check to back up the CT result.

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The second pulmonary specialist said that CT's while excellent, do not show any information about the airways themselves. (By the way, this is why you can't diagnose asthma based on CT scans).

The pulmonologists can't really justify a Bronchoscopy with 2 negative Chest CTs either. I asked the more recent specialist if an FNAC of any accessible neck nodes would be possible, and he said he'd try to get that going.

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In summary, no non-cancer restrictive lung diseases to rule out. As for just respiratory illnesses overall (things that follow Obstructive patterns as opposed to restrictive), there's still asthma and COPD/emphysema.

This kinda reminds of the Sherlock Holmes quote: "Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth." So either I have cancer or COPD, and at the kind of probabilities I'm playing with now, I can't tell which of these long-shots is more likely.

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Guys, I'm really sorry for the long-winded rant. I'm honestly grasping at straws here trying to get my health back to normal, if that's even possible. It's just really frustrating when the best diagnostic tests modern medicine has to offer don't provide any clues.

Cheers,
Parit

Hey guys,

Sure, I understand that scans aren't diagnostic in themselves, i.e. not every shadow on an x-ray is automatically a tumor. That's a problem of test specificity not being adequate to distinguish some kinds of bad things from other kinds of bad things.

I'm more concerned with sensitivity. That is, how good is this test at showing that there's some sign of anything that needs further workup. Basically, will it miss some red flags when it shouldn't?

Judy--Thanks for the suggestions. I brought up the VQ Scan to my doctor, and he said that it's superfluous in light of a negative Contrast CT with the PE protocol. His reasoning was that it was neither superior test to the CT scans I had nor would it provide any additional information.

I did try asking for bronchoscopy, but pulmonary specialist won't order it with negative CTs.

I definitely am grateful to have been able to have these tests done, but right now we have no leads to work off of. Just a bunch of White Blood Cell counts (Monocytes + Basophils) and Inflammatory Markers gone haywire, nothing suggestive in imaging, and not really any non-invasive workup is left.

Despite the SOB, cough, and clubbing getting worse...we can't even biopsy anything anywhere with zero radiology indicators

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Anyway, thanks for helping out! I'm grateful to have been able to discuss this with you and bounce ideas.

Hi Janine,

Thanks for your response. At this point, based on what you've said I'm thinking it probably is cancer. None of the other lung conditions are as wild-cardy and unpredictable as cancer.

The only weird thing is that pleural effusion is usually visualized by X-Ray alone, so CT would definitely not have missed it. But again, apparently cancer can do anything...

I'm really frustrated because the doctors have effectively ruled it out in their minds, when it's very possible it's there. I mean when you've "ruled out" every lung disease, you haven't really ruled out anything, right?

I'm just worried about dying young from this terrible disease that we can't even diagnose properly. I know people my age usually get blood cancers, lymphoma, thyroid and stuff like that, but I feel like I'm that unlucky one in a million who got the worst possible cancer with the worst possible presentation at the worst time.

Thanks,
Parit

Hi Janine,

My bad, I'm sorry I misread your post. Yes, I absolutely agree that the situation is that we're trying to track the cause of symptoms and see if it's lung cancer or not, as opposed to finding an incidental tumor without having symptoms.

And yes, taking into account the impression I've gotten from my doctors, I also agree that symptomatic lung cancer is found easily on imaging. My pulmonologist actually said X-Ray would have 80% chance of catching any symptomatic masses, and that CT is basically 99% sensitive for symptomatic tumors and also above 95% sensitive for early stage tumors or any tumor above 3 millimeters.

So at this point, having done both a High-Res CT protocol and a Contrast CT protocol, and having the readings double checked by other radiologists...I'm pretty sure we've gotten all the information we could from the scans. And if somehow tumors < 3 mm are causing my symptoms, that would be quite strange.

Anyway, my PCP and pulmonologist both suggested that it might be worth doing a Core Biopsy of some neck lymph nodes. At this point, while the nodes are sub-centimeter as confirmed by MRI, it should be worth it to get those evaluated since we can't visualize anything in imaging studies for the Chest and Abdomen.

Thanks for the explanation, Janine. I hope you have a great start to your new year and I'm crossing my fingers that everything goes well for both of us.

Cheers,
Parit