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.

@stephanieann Stephanie, we are close in age. I think "some" doctors factor that in before anything else...lol
I have posted so many places and times. Please forgive me if I repeat myself. I'll try to be direct to your specific questions.
I had flushing, shortness of breath, and phlegm I was coughing up months before the cancer diagnosis. I told my GP with every visit. (every 3 months) She ignored, or made light of it all.
Yes, NETs can metastasize, and it is not organ specific, or so I've read. (Like there is a "normal" path breast cancer tends to travel) My mom' s went to her liver, then bones. One person posted her husband's had gone to his brain. But that was years after his initial surgery, and he had quit going for scans at some point, so not a great example.
Other than the symptoms I mentioned, I did not feel necessarily better after surgery. The lethargy got a little better, but returned with a vengeance upon taking the I.M verson of Somatostatin.
The fact a robot was used caused most of my aftermath problems. A year out, and when I breath it still feels like I have glass in my lungs. Hopefully the ablation will help with that.
Yes, I tried acupuncture after the surgery. It helped, but it was not covered by my insurance. I went as many times as I could, and it enabled me to at least touch my ribcage to massage it. Lidocaine patches have helped.
Stopping the shots has caused the DIPNECH symptoms to return. Not so much the coughing, but the phlegm in the back of my throat (quite annoying.) and flushing.
When I saw my GP this last Thursday, it was through questions, that I realized she never did have any idea of this type of cancer. No knowledge of NETs or DIPNECH. That explained to me why she choose the surgeon she did. I'm not confident HE knows anything about NETs etc. either. If I had it to do over, I would have been with a specialist who, first would have operated the conventional way (no robot) and who possibly would have waited to see if the tumor would have continued to grow, especially after the biopsy showed it was benign. I'm on the fence regarding waiting.
EVERYONE should go for a second or even third opinion. Both my pulmonary doctor and the surgeon were in agreement so I thought I was in good hands. I've also mentioned in here before, it was here I was helped in findng a NETs surgeon, specializing in that form of cancer. I never heard the surgeon who operated on me mention either terms. Just carcinoid tumor.
Lastly, I read recently 50% of DIPNECH pts. go on to have cardiac involvement.
That seems high to me. I'm going to delve into that further.
I have been told I may have to have open heart surgery or a fairly new less invasion "O ring" inserted. That, quite frankly, has me more worried than my lung cancer. And at this point I do not know if the heart problem in my case is even related to my cancer.
I have recently gotten approved for a medical advocate. I wish I had done that sooner. It is paid for by Medicare.
I believe I am in God's hands and fear should not overtake me. I do get anxious at times. 🙂
I hope I answered all of your questions. If not, feel free to inquire again. All I have said is from my own research and personal experience. I'm am definitely not an expert. Blessings 💕