Lung nodules highlighted in pet scan, my doctor says to wait to biopsy

@albertklein

Did your doctor say why? Do you have any respiratory issues? I would be concerned. Having said that, when my lung nodules were first discovered due to chronic coughing, they wanted to biopsy and I refused because the only way to reach them was by cutting my chest and lungs wide open. They were baffled by the pattern and guessed either something unusual and benign or metastatic cancer coming from outside the lung but where was the primary cancer? I didn’t want major surgery if benign. If metastatic, I figured too late. This went on for 12 years with most guesses benign. The 50+ tumors were slowly growing. Finally, having breast cancer for the second time they insisted on a lung biopsy but could now reach the largest tumor from the outside with a needle biopsy which was more reasonable to me. It turned out to be neuroendocrine cancer NET. Unrelated to the breast cancer. Typical carcinoids. More rare. Luckily slow growing. I also have the very rare DIPNECH which explained the unusual number of tumors and pattern. They destroyed the largest tumor through microwave ablation to prevent spreading. Others will be destroyed when they reach 2 cm. Mist are 1 cm+ right now. I’ve been taking octreotide injections for 2.5 years. Really improved my chronic coughing and shortness of breath I had for 30 years that was blamed on allergies and asthma.

How many tumors do you have? How large? What led to having scans?

Oh, one other detail about my case. I had three PET scans over the 12 year span. The largest two nodules showed a higher FDG uptake making them suspicious, but the scores were in the gray zone for cancer so inconclusive without the biopsy.

@albertklein Welcome to Mayo Connect. We are a community of patients and caregivers, not medical professionals, so we aren't really in a position to offer advice.
That said, why did your doctor recommend a wait and see approach? Have the results been reviewed by an oncologist or pulmonologist? What is your personal medical history - any previous cancer, lung disease, smoking or vaping history or exposure to chemicals? What symptoms led to the scan?
All of those would be considerations as to what shoould be the next step and when...
Sue

Hi, Albertkline,

That is really scarey news...my sympathy.
Sue gives really good advice in her post.

Maybe you could talk with the doctor or his nurse again? A telemedicine or a phone call? Maybe when the doc first gave you the news, you may have missed some of what the doctor said? That has happened to me. The doc says something that startles me and I can't keep up with the rest of what he says, and later I'm not really sure of the whys and wherefores and details.

It can be helpful to have another person-- like your spouse or adult child-- listen in or be with you when the doc explains serious/complicated things.

Hope all works out for you. Hugs.

I had lung nodes show up on an X-ray so my Dr ordered a CT Scan. The reading of that scan said the nodes had calcified and recommended another CT scan in one yr. I had the flu two times bk in the 80’s and this is prob when the nodes formed but then calcified. They are not cancerous.