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

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

Hi everyone,

I'm 23, male, non-smoker. I have no family history of any cancer or lung disease. I do have GERD/acid reflux, which I've had for about 3 years.

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History:
My very first symptom, about 2 months ago (October) was some "hardened" lymph nodes in the left supraclavicular region and in the lower rear of my neck on the left side -- this is what sent me hurrying to doctors to figure out what's going on.

Then, since early/mid November (about a month ago), I've been having noticeable SOB and occasionally a cough when I breath too deeply or when I wake up. The cough mucus is usually white to yellow, occasionally get some red streaks. I have been feeling quite tired/fatigued, and despite my weight looking relatively consistent on the scale and appetite being normal, I've dropped 2 pant sizes in the last month or so.

Tests So Far:
>Bloodwork = Elevated CRP, ESR, Monocytes, Eosinophils, and Basophils

>Neck MRI w/ and w/o contrast (11/05/16) = visible sub-centimeter supraclavicular and posterior cervical nodes. (Report says "normal exam")

>Pulmonary Function Test (12/13/16) = "Restrictive Breathing Pattern that did not respond significantly to short-acting bronchodilator therapy."

>Non-Contrast High-Resolution Chest CT (12/02/16) = normal ----- Note: about this, I checked to make sure it wasn't just a few thin slices in a few parts of the lung. The scan definitely covered the whole lung down to the upper abdomen. Just doesn't use IV contrast

>Contrast-enhanced Chest CT (12/22/16) = normal

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No clear diagnosis.

Although I still feel the collarbone lump/node, no physician has actually felt it and therefore is not inclined to biopsy.

How may I push for biopsy? What sort of biopsy is advisable?
Is there anywhere in this testing process that we would have missed something?
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Honestly, I can't sleep well thinking that not only am I going to die, but that I'm completely powerless about it

Thank you for any sugges

JimC
Hi langarooo,

Hi langarooo,

Welcome to GRACE. I'm sorry to hear that you have been suffering with these symptoms and that they've caused you such worry. Although this site provides information mainly to patients and their caregivers with confirmed cancer diagnoses, I do have a few thoughts to share with you.

First, though I can't say it's impossible, it is highly unlikely for a person of your age to have lung cancer. It would also be rare for a cancer which has not been detected on two chest CTs to be causing such symptoms. Usually, the problem with lung cancer is that by the time it begins to cause noticeable symptoms, it has grown and spread.

Putting those two factors (young age and inability to image a suspected cancer) together, the chance that your symptoms are a result of lung cancer are extremely low. There is certainly something going on, requiring further workup, but if you haven't already seen a pulmonologist, that might be a good place to start because of your symptoms of shortness of breath and cough. If you can, a consultation with a doctor at a research hospital would be best.

Good luck in determining the cause of your symptoms and finding relief from them.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cards7up
If you look at all the blood

If you look at all the blood count causes, you'll find that most have to do with infection or inflammation.
I agree with Jim, that you should see a pulmonologist and see if you have asthma or sinusitis to start.
If nothing shows by now on several CT scans, then there would most likely be nothing there. As also noted, most people with LC have no symptoms including myself and I was diagnosed at stage IIIA and my tumors were not that large. Whoever ordered the blood tests, is who you should follow up with.
Take care, Judy

langarooo
Hi Judy,

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.

=====

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

langarooo
Hi Jim,

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

JimC
Hi Parit,

Hi Parit,

It would be extremely unlikely that all of the slices of a CT could miss all of the tiny nodules you postulate. A CT will image nodules of that size, it's just that such a scan can miss one that small if it happens to be right at the spot where the images "cut". Regardless of the scan issue, if there were enough of them to cause your symptoms, you would likely see a cloudy area in the lung.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cards7up
And it would be highly

And it would be highly unlikely that a 3mm nodule would cause any symptoms whatsoever. I had an xray first and one nodule was seen. Then with the CT scan, the second was seen. They were 1.2 cm and 2.3 cm upper and lower right lobes. See my profile on the bottom of the response. The other thing to check for would be radon in the home. This is the second leading cause of LC. You could also have some respiratory illness without it being LC. Might want to check your heart next.
Take care, Judy

langarooo
Hi guys,

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.

==

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.

===

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.

===

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

cards7up
You can't diagnose anything

You can't diagnose anything based on just a scan. It's only a diagnostic tool to move towards further testing to get to a diagnosis. And again, there are many other things this could be other than cancer. Why not ask for a pulmonary ventilation/perfusion scan. You're fortunate to have coverage that allows all these tests to be done, so go all the way. Take care, Judy

langarooo
Hey guys,

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.

catdander
Chest CT scanning is the gold

Chest CT scanning is the gold standard when looking for irregularities in the lungs. There are rare cases where pleural effusions have found cancer cells where there was no tumor. These rare cases are evidence that cancer can do anything. Cancer is usually easily suspected by CT with symptoms like shortness of breath and cough when caused by cancer. Nothing in cancer is absolute so you'll not get absolutes here.
Asthma and other less threatening respiratory issues can be difficult to diagnose.

I hope you are able to find symptom relief and peace of mind.
Hopeful for a productive and happy new year,
Janine

langarooo
Hi Janine,

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

catdander
I'm sorry that's the take

I'm sorry that's the take away you got from my post. I was hoping for the opposite. The reason lung cancer isn't caught in early stages is because it usually doesn't cause symptoms. But since you are looking for it because of symptoms it would be clearly seen via nodule or pleural effusion.
Lung cancer isn't normally the first thing pulmonologist look for in symptomatic patients because normally the symptoms are caused by something else. But a CT scan is used to rule out tumors and or fluid build up, both are clearly seen on a chest CT.

All best,
Janine

langarooo
Hi Janine,

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

Alex2210
How did it go?

Hi Parit,

I wondered how did it end up? Did you have your final diagnosis?

I hope this is not lung cancer. 

Best, Alex

JanineT Forum M...
To add to my comment on the

To add to my comment on the other thread I want to bring this post back up.  I saw it last night and thought it said a lot very well.  Specifically the #2 post.

Please let us know if you find an answer to your questions and hopefully a cure to your health problems. 

 

All best,

Janine