So far, my MSK Dr says no treatment needed since there has been no notable change yet. But I’m acutely aware that could change every time I get a scan. I will just see how it goes. As long as I am feeling good and there is no change. I don’t see the need for a second opinion, but I am within reach of another net specialist, and if anything changes, I believe I would get another opinion. My shortness of breath doesn’t slow me down too much, I’m still fairly active, and able to take long walks and do dog sitting in my retirement. I just can’t go real fast or do a lot of climbing, stairs or hills, which is fine with me. Ha ha. Honestly, I’ve had that condition for a pretty long time, and I am kind of relieved to know the cause. Prior to diagnosis, every doctor would give me inhalers or tell me to get in better condition through exercise. Which I do still try to do, but at least I know it’s not just because I’m out of shape. Lol. That said, I am grateful to know that there are potential options for treatment out there. I’m just sorry you’re not getting more relief from them. I’m guessing it must depend on where all the little bumps and tumors are located, if it starts causing breathing issues. I don’t know, no one seems to know. So it’s nice to have this place to chat. Please keep us posted how you’re doing