@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 💕