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Neuroendocrine Tumors (NETs) | Last Active: 16 hours ago | Replies (28)

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Profile picture for lisaonthegoco @lisaonthegoco

They were discovered when I was about 45 y.o. And I am 70 now. I had imaging followed closely for a few years back and then the breathing tests and told light asthma but inhalers never helped. My pulmonologist quit reminding me to come in. I caught bronchitis every time I got near anyone smoking and so often that when I got yellow/ green I called my PCP Dr. and was prescribed without even visiting. Then Covid hit with oximeter purchase and I discovered that I was desaturating up and down a lot -not coughing more or less than usual but since the big concern was oxygen…I was sent to National Jewish here in Denver. Next thing I know I had to have a sleep study and got a CPAP with oxygen and also told oxygen during the day every day. Further study with the pulmonologist became a Broncoscopy with biopsy and a discontinue of oxygen during daytime to only wear with exertion. I have been followed once a year with imaging ever since and lucky me I had another Broncoscopy but no biopsy between then and now and more inhaler tries that just make me cough more and now latest results show Stage 4 meaning NETS all over my lungs, non functional but now need to stop the 3 biggest near an airway to quit growing. That’s what I know and am dreading the scheduling of a shot every 28 days.

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Replies to "They were discovered when I was about 45 y.o. And I am 70 now. I had..."

@lisaonthegoco so what does stage 4 nets mean is that still treatable?