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Describe your recovery from lung NET surgery
Neuroendocrine Tumors (NETs) | Last Active: 9 minutes ago | Replies (99)Comment receiving replies
@nannybb I'm sorry to hear there's been both complications and ongoing pain! I also suspected some of my pain was due to my small frame (I'm 5'2), and someone I know who has unrelated cancers but works in the medical field once told me that it could my nerve mapping. I had fluid in my lungs when I was discharged as well, I got it up coughing over several weeks. But those initial coughing fits were so painful.
I struggled for months to reconcile the fact that my surgeon told me I'd recover in 6 weeks and not notice much of a difference (and in a social media group for NETs it seems some people have that experience), with my pain and difficulty breathing for far longer than that. Good luck with your PET scan and ablation.
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@wushirl By the way, could you explain nerve mapping please? TU
@wushirl Hi,
I am sorry to learn of your ongoing pain. I am trying to decide if I should follow the surgeon and medical oncologist advice to have a right lower lobe lobectomy. I am 77 and have major heart disease. I just had a cardiac catheterization so they could determine if it was safe for me to have the lobectomy. They said I have a higher risk factor but that I could safely have the surgery. But After the open heart surgery I had major complications, sepsis, poor healing of sternum and so am concerned to have another surgery in my chest. I still have pain 6 years later if I deeb breathe but not a big deal. I am not sure I want to trade quality of life I have now just to get a few more years. But they also told me there is a risk that a NET can just start bleeding or metastasize. I am not having that many symptoms but do have a lot of fatigue, sometimes shortness of breath and get flushing sometimes. But the cardiologist and oncologist don't know if this is caused by my heart or the NET. Did you feel better after the surgery? Have you tried any alternative pain remedies like acupuncture Sometimes I wonder if the cure/surgery may be worse than just living with it? Your thoughts welcommed
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@wushirl Wow, our situations are SO much alike. I had the PET scan results come back. It was a bit confusing, so I put it into an upgraded version of AI. "He" said all my organs were captured from my head to my thighs. I think I mentioned in here the PET was orfered by a new oncologist. He was not totally clear looking at my first PET what he was seeing on that report, i.e if I truly had DIPNECH. So, AI basically said this last PET showed zero tumors (not the 3 that the previous scan showed) and lymph nodes were all clear. I see the Oncologist next week. By then the cancer board at OSHU should have reviewed my case and he can confirm the AI diagnosis. My question would be were the 3 tumors really there to begin with? I believe I could have been healed. I've had a lot of prayers offered up. I just still have questions. One other thing, AI said the PET could not affirm that I still do not have DIPNECH. I have been flushing for the past 4-5 days (face) and getting stuff in the back of my throat, but coughing very little. So, I am still confused. Wondering, was your pain issue ever relieved?