Hello @stephanieann,

Given all of your concerns, have you considered getting a second surgical opinion? If so, I recommend that this be with a NETs specialist. There are NET specialists at all of the Mayo Clinic locations. Here is a link to information on scheduling an appointment at Mayo: http://mayocl.in/1mtmR63. If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/.

I look forward to hearing from you again. Will you continue to post as you approach this decision?

@stephanieann Oh no, 6 years later to be having pain is so hard, I'm sorry to hear that! To be clear, I no longer have pain more than a year out. I do sometimes have strange Charlie-horse-like muscle cramps around the surgical areas, but they happen less and less. When I first started having them they were so intense I would cry out and do deep breathing like I was giving birth. It would be awkward if I got one in the middle of a work meeting, and I wanted to scream but instead gripped my chair and deep-breathed until it passed. You have a tough decision ahead of you, I think you can only follow the advice of your doctors and your own gut. You have more complications than I did, and I was 44 at the time of surgery, last year. I can tell you my experience if that would help you process your thoughts. I did not exactly have symptoms prior to surgery either. I complained to doctors that my breathing seemed off, that my cardio including swimming and boxing seemed labored and I felt like I was able to do less than I used to. As you might expect, that didn't raise alarms with anyone and doctors just dismissed that. What happened was, I got pneumonia 2 winters in a row, almost exactly a year apart. Both were difficult to recover from. Each time there was an x-ray, and the second time I read the x-ray report it said there was a mass in the same location, of the same size a year prior. I followed up on that with my primary care doctor, got it biopsied, and had a bunch more tests followed by the lobectomy. I will say that my quality of life seems a bit harder post-surgery, but I have no regrets getting that slow-growing NET out. At times my breathing is labored, like breathing through a straw in my chest. During this week's heat wave my chest feels tight and I feel light headed. But for everyday life and activities, after a longer-than-anticipated recovery I am able to do everything I could before. Sometimes I'm more easily winded or feel a bit weaker. I can't do all the active things I used to, or to the degree I used to. Some of them were a bit part of my life, or I want to be able to run around and keep up as a mom. But considering the alternative, I'll take it.

I know that after a certain age that cancer screening and treatment protocols change, and as you say they weigh quality of life against major interventions. We are dealing with that with my father right now. Maybe you would like to seek out a second opinion for another doctor? I wish you the best as you consider all this. Sending hugs.