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  • 22 yo with Nail Clubbing and Shortness of Breath, Really worried

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    Old 12-16-2016, 01:00 PM   #1
    langarooo
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    22 yo with Nail Clubbing and Shortness of Breath, Really worried

    Hi Everyone,

    I'm a 22 year old male never-smoker, with no family history of any cancer or lung disease. I do have GERD/acid reflux, which I've had for about 3 years.

    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 yellow to dark yellow, occasionally get some red streaks. Come to think of it, the SOB was usually there but only when I was climbing stairs back during the summer..didn't think much of it.

    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. I thought that was strange.

    Doctors Visits:
    1) Primary Doc (saw repeatedly throughout this process): He didn't think the supraclavicular node was actually swollen, but sent me for a neck MRI w/ and w/o contrast anyway. The neck MRI came back clean. Being paranoid, I read that that node was called the Virchow node, and almost always indicated an intra-abdominal malignancy. So I said this to my doc, who still said I probably didn't have any cancer at my age, but if I wanted to pursue it, I could.

    He gave me referrals to a Head and Neck specialist, GI specialist, and a Pulmonary Specialist.

    2) Head and Neck specialist (saw in late October, and again in early December): Agreed w/ primary doc that supraclavicular node was not swollen. Did the laryngoscopy and found nothing. Said to believe in the MRI.

    3) GI Specialist (saw from late-October to-mid November): Again, did not think the node was swollen. Did an Upper GI Endoscopy, which came back clean and an MRI/MRCP of the Abdomen w/and w/o contrast, which also came back clean. We did a bunch of blood tests, the only thing that came back slightly positive was Fecal Lactoferrin at about 9.54 (reference of < 7.00), but we repeated that and it went down to 5.58.

    4) Pulmonary Specialist (been seeing since early December): Yet again, he didn't think any nodes were swollen in that region. We did a preliminary spirometry test, which showed a "Restrictive Breathing Pattern that did not respond significantly to short-acting bronchodilator therapy." He remarked that my nails were clubbed. We did a High-Resolution Noncontrast Chest CT did a complete autoimmune disease panel and interstitial lung disease panel, and he put me on Advair 250/50. All of those tests came back negative, except for allergies to dust and cats.

    Tests So Far:
    * Neck MRI w/ and w/o contrast (11/05/16) = normal
    * Upper GI Endoscopy (10/28/16) = normal, mild inflammation
    * Chest X-Ray (10/21/16) = normal
    * MRI/MRCP Abdomen w/ and w/o contrast (11/15/16) = normal
    * Chest X-Ray 2 (11/30/16) = normal
    * Pulmonary Function Test (12/13/16) = "Restrictive Breathing Pattern that did not respond significantly to short-acting bronchodilator therapy."

    * High-Resolution Chest CT Non-Contrast (12/02/16) ----- 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

    --------
    In short, no one knows what's going on and neither do I. Although I still feel the collarbone lump/node, no physician has actually felt it and therefore is not inclined to biopsy. Is there anywhere in this testing process that we would have missed something? If so, what's the "weakest link" in this battery of tests?
    --------

    Honestly, I can't sleep well thinking that not only am I going to die, but that I'm going to die with not much time left. The biggest thing that depresses me is that I just finished school and started working at my dream job, and it's like just as everything was going good, I got blindsided by a wrecking ball of disease.

    Thank you for any suggestions, ideas, or thoughts! I really appreciate any way to shed some light where doctors have left me confused

    Last edited by langarooo; 12-16-2016 at 03:15 PM.

     
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    Old 12-16-2016, 05:17 PM   #2
    tarot
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    Re: 22 yo with Nail Clubbing and Shortness of Breath, Really worried

    Hi

    I feel you are suffering from anxiety.
    Looking at all the tests you've had if there was any cancer it would if shown up.
    I have been ill 9 weeks now cough pain in chest upper back wheezing virus cold tonsils swollen I've had bloods and sputum and that's the only tests I was basically told its stress but I feel exhusted and now cross they won't test.

    If you were me I'd understand your worry but you have had lots tests that show cancer so you maybe need to see your doctor about anxiety as it does sound like you may have some.

     
    Old 12-16-2016, 06:58 PM   #3
    langarooo
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    Re: 22 yo with Nail Clubbing and Shortness of Breath, Really worried

    Hi tarot,

    Thanks for your response. I am definitely suffering from anxiety, but I guess I'm trying to figure out if my anxiety has a basis in something or not.

    I agree with you, for sure, that something...anything would have shown up on the scans. That's what strikes me as odd. Like these weren't your basic X-rays or Ultrasounds...MRIs and CTs are like the best imaging tests (aside from PET/CT) to find cancer.

    The big factor for me is that if there were nothing wrong, then gradually I should have been feeling less of the symptoms, not more.

    If there is something concerning that's maybe too small to show up on the scans, it's even more reason to figure it out ASAP before it gets worse.

    I guess I'm just frustrated with having these symptoms and no clear plan on how to get better, cause no one can tell me what I'm dealing with

    -----

    Also, I'm so sorry that you've been feeling ill for so long without any action taken by doctors. Just a guess, it sounds like a really bad infection maybe? I'm sure you could push for a Chest X-Ray. Heck, around where I go, they do one to everyone who's just mentioned having a cough. So you definitely need one of those...maybe some cough meds too.


    I hope we both get better soon!

    Last edited by langarooo; 12-16-2016 at 07:00 PM.

     
    Old 12-17-2016, 03:01 AM   #4
    tarot
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    Re: 22 yo with Nail Clubbing and Shortness of Breath, Really worried

    Hi

    I think to get lung cancer symptoms there usually are growths or tumours that's why people get coughs breathlessness exhaustion chest pain back pain
    Anxiety can cause all these problems and it can start from anything simply thinking we've got cancer can make symptoms aggrivated but as you say no one would know 100%.

    I suffer mild anxiety life events made that but I know my body and having never had illnesses one after another like now is what worries me & like you my minds fixated on cancer as tbh that's all we read see hear these days isn't it so naturally anything that could kill us we will fight against
    In our case we are fighting against lung cancer though not diagnosed which is draining
    My best friend if 45 out of out 47 years alive said a good thing her mum died cancer 4 years ago her aunts this year I said to her about how I'm worrying
    She said you can worry every day and let it take over your life & you not have it then what do you have - an ex's instance not living - since then I just accepted this but am going to see a doctor Thursday to talk through my illnesses

    Last year I was 5 months pregnant with Lily I had hemorghing so soild bedrest 3 months then I caught sepsis and my waters broke long story short
    Intensive care no Lily and me seriously ill followed by 2 months hemoraghing 2 months later so I had 11 blood transfusions in 3 months
    I feel doctors now think I'm anxious after this but I have had awful chest and back pain so like you say ask fur tests I will , I'm in the UK so it's tough getting any tests where I live atm

    I'm sure your fine try and relax meditate it helps get busy in life and your mind may settle into a relaxed area

    Regarding your symptoms if you had cancer you'd get more weekly it doesn't go away just gets increased.

    Cherry

     
    Old 01-05-2017, 10:20 AM   #5
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    Re: 22 yo with Nail Clubbing and Shortness of Breath, Really worried

    Langaroo, I disagree this is anxiety, although it would be natural to be anxious about not feeling well and getting no answers. Anxiety doesn't cause clubbing of nails or restrictive pattern on spirometry. Scarring (fibrosis) in the lungs does and some people develop this either without a known cause (called idiopathic pulmonary fibrosis) or from certain causes, including toxic exposures to gases, chemicals, asbestos, etc, and certain inflammatory diseases like rheumatoid arthritis, lupus, sarcoidosis, and Wegener's granulomatosis, a type of vasculitis. There is also an enzyme deficiency that can be associated, (alpha-1 anti-trypsin deficiency) and you should be tested for that (blood test). The fingernail clubbing comes from chronic low oxygen levels in blood. I am curious what your oxygen saturation levels are, measured by the finger probe. Fibrosis requires a spiral CT to show up, as it may not show on regular CT. Severe obesity can cause restrictive patterns, as well as pleural thickening from recurrent pleurisy, but that would have shown on CT scan. I would seriously consider, if you can, going to Denver to be seen at National Jewish Hospital. They are the foremost center in the US for pulmonary problems. It is important for you to learn everything you can about protecting your lungs from infection, allergens, smoke and other irritants, and to seek a cause of this. If you have any joint pains or arthritis symptoms, further autoimmune workup or continued surveillance for these disorders is important. A family history of anything similar should be reported as well.
    You probably need a cardiac workup as well to make sure heart valves, etc. are in good order. Let us know how it goes and what your Drs. think should be done next. Two other blood tests that might be helpful-serum ACE (sarcoidosis) and ANCA (Wegener's) in addition to the alpha-1 antitrypsin level. These may have already been done, but I would check and get copies of your labs and image reports for yourself.

     
    Old 01-05-2017, 11:47 AM   #6
    langarooo
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    Re: 22 yo with Nail Clubbing and Shortness of Breath, Really worried

    Hi ladybud,

    Thanks for your response. The doctors ruled out all auto-immune causes and cardiac issues as well (blood tests + echocardiogram). Only test we haven't done is the Alpha-1-antitrypsin deficiency.

    Since the lymph nodes are still there and I'm finally getting a biopsy after begging for 3 months, I think that should give us the answers we're missing.

    My suspicion is that since it hasn't shown up on 2 CT scans (which were helical, ultra-fine resolution, by the way), it's some rare "invisible mass" Lung Cancer.

    The part that depresses me the most it feels like it was almost as if all those tests for the past 3 months were useless. The only thing I wanted to avoid was being one of those cancer patients who couldn't be helped because they waited too long.

    Sorry for venting, I'm just so frustrated with how this all happened. I guess I'm just scared because I'm not ready to die in any sense, especially something that could have been easily fixed a few months ago.

    Thanks,
    Langarooo

     
    Old 01-05-2017, 12:58 PM   #7
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    Re: 22 yo with Nail Clubbing and Shortness of Breath, Really worried

    Quote:
    Originally Posted by langarooo View Post
    Hi ladybud,

    Thanks for your response. The doctors ruled out all auto-immune causes and cardiac issues as well (blood tests + echocardiogram). Only test we haven't done is the Alpha-1-antitrypsin deficiency.

    Since the lymph nodes are still there and I'm finally getting a biopsy after begging for 3 months, I think that should give us the answers we're missing.

    My suspicion is that since it hasn't shown up on 2 CT scans (which were helical, ultra-fine resolution, by the way), it's some rare "invisible mass" Lung Cancer.

    The part that depresses me the most it feels like it was almost as if all those tests for the past 3 months were useless. The only thing I wanted to avoid was being one of those cancer patients who couldn't be helped because they waited too long.

    Sorry for venting, I'm just so frustrated with how this all happened. I guess I'm just scared because I'm not ready to die in any sense, especially something that could have been easily fixed a few months ago.

    Thanks,
    Langarooo
    I am glad you are getting a biopsy of node, which should yield some valuable information. I think worries about dying from this are way too premature. Even if it is something like lymphoma, those are highly curable, and with symptoms just starting in October, this is still very early in it's course, whatever it is. It is unlikely to be that with clear ct scans of neck, chest and abdomen. It is still possible to have autoimmune disease even when blood tests are negative, as sometimes symptoms precede lab evidence. So I would caution you not to jump to dire conclusions before you have the diagnosis. Most things are treatable and you are very young.

     
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