Most small pulmonary nodules are benign but….

Prepare yourself, this is a long one.  According to the Cleveland Clinic, there are two main types of pulmonary nodules: malignant (cancerous) and benign (noncancerous). Over 90% of pulmonary nodules that are smaller than two centimeters (around 3/4 inch) in diameter are benign.  My nodules are only 2-3 millimeters.

Because my nodules are so small, a biopsy is not really an option and neither is a pet scan and besides that, the Pulmonologist didn’t feel either were necessary because they are so small.  The only concern that he had was that they are located in the upper right lung and if they were cancer, this is most likely the place they would be located.  He wants me to have a follow up CT Scan in 6 months and if they haven’t grown, I should be in the clear, as far as lung cancer goes anyway.

That’s the good news.  The bad news is that I failed the Spirometry test.  Apparently, I can breathe in but not out.  That didn’t make a lot of sense to me because when I had breathing problems before it was as if I couldn’t breathe in enough air.  I never felt like I had a problem expelling it and I mentioned this to my regular doctor and also the fact that this had only happened in the last year and the only thing that I could think of that was different was that I was taking Topiramate.  So my doctor and I looked it up and realized that breathing problems, bronchitis, and even pneumonia had been reported with that drug.  I mentioned all of this to my pulmonologist and he dismissed it immediately.

It pissed me off.  A lot.  I mean a whole hell of a lot.  No one knows my body like I do and I am NOT an idiot.

The pulmonologist said that chronic bronchitis or smoking when I was younger caused this.  I told him that I had gone to a pulmonologist years ago (about a year after I quit smoking) and had several lung function tests and scans done and everything was fine.  There were no signs of disease and I haven’t smoked in years.  He then insisted that I have COPD as a result of chronic bronchitis.  So, I told him that I had not had bronchitis at all in the previous 10 years, only in the last year, since taking Topiramate.  And I had had it twice in the last year with little coughing and no mucus at all.  I also told him that the day I stopped taking the drug I could breathe better and that every day it gets better.

And just because I need to prove things to people to see if they are open to learning, or idiots that should be written off, I showed him the sites where many people had complained of respiratory issues with Topiramate.  He said no one should go to the internet for medical advice.  So, I showed him a case study that I found in the American Journal of Medicine about a woman who almost died from acute eosinophilic pneumonia as a result of taking Topiramate.  He said that it was a rare case and he didn’t think my case was related to a drug at all.

But I do.  And I feel strongly about it.  And I have my regular doctor on my side because she believes it too.

I had MRI’s done a year and a half ago and they showed no issues at all.  I have never had breathing problems in the past and I’ve been a runner for years.  I scheduled a follow up in six months and he wanted to prescribe an inhaler but I don’t feel that I need it so I politely declined.  He then said that he did find it perplexing that I’m able to run for miles at a time despite what the test showed.  He also admitted that things didn’t really add up but he still refused to believe that this may all be drug induced and he said that with COPD eventually, ‘my wheels will fall off the wagon’, whatever the hell that means!  Admittedly, he said he is not a runner, is fairly sedentary and needs to exercise but cant understand why anyone would want to run.

I won’t be at that follow up appointment.  I’ve already scheduled with another physician who specializes in immunology and allergies and focuses on issues regarding the lungs.  Unfortunately, my insurance company will not pay for the visit because she isn’t in the network but I don’t care.  I will curb my shopping for the next year if I have to because she was highly recommended and I am not fucking around with my health.

And for the record, I ran three and half miles this morning.  And it felt amazing and healthy.

Thank you to everyone for the prayers and well wishes.  I won’t stop until I find out what’s going on, I can promise you that.  And I’ll still be running when I’m 102!

10 thoughts on “Most small pulmonary nodules are benign but….

  1. Man, it’s too bad that the topiramate is messing with your lungs (since it was helping your migraines)
    Hope the next doctor really listens to you and figures it out.

  2. Good for you for standing up for yourself and believing your own experience. Hope this next doc is more receptive to hearing your experiences and finding the right path forward for you!

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