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Describe your recovery from lung NET surgery
Neuroendocrine Tumors (NETs) | Last Active: Jul 5 6:59am | Replies (102)Comment receiving replies
@hopeful33250 My surgery was almost a year ago. I have been dealing with pain ever since. I have posted more than once that it was due to the surgeon using a robot and my having a small frame. I was released from the hospital too early and had fluid still in my lung. I started coughing, and had to go back for an aspiration of the fluid. I've had two nerve blocks, and am scheduled to have an ablation in August. My oncologist ordered another PET as he was not certain I had DIPNECH. My surgeon was upset that I added the oncologist to the team. It has been a bit of a rough ride. I've been on the three times a day self injected med. , and then switched to the once a month. I did not like the monthly injection at all, so the oncologist said I could go off until he knows more. I am anxious to know all of what I have read regarding the PET scan. It is not totally understandable to me. I also have to find a good pulmonary and cardiac doctor. Not easy because United Healthcare has pulled out of some specialized doctors where I live. I believe that is why I got a rejection from Medicare. Sorry this is so long.
Replies to "@hopeful33250 My surgery was almost a year ago. I have been dealing with pain ever since...."
@nannybb
Hi Nanny
I am sorry you are still having pain. I am 77 and have a 19 mm lung net that surgeon and a medical oncologist said I should have a lobectomy to remove it. It is dotatate positive but they did a CT of my abdomen and liver and no indication that it has spread. It has been very slow grown ing since 2020. However my PET scan lit up recently in the lung when it had not done that before a couple years ago. I am really apprehensive about my quality of life changing for the worse, after the surgery, especially when I read stories like yours. . In 2020 I had a triple bypass heart surgery and got sepsis and a few other major complications, Other major surgeries I have had complications with as well so I am wondering if I should just wait and watch because of my age and heart conditon. I do get shortness of breath upon exertion but I wonder if it is from the NET or my heart disease. The doctors aren;t sure. Did you explore any other alternative treatments beside. surgery. Also how much help did you need at home when you returned from the hospital. Are you giving yourself self injected pain meds?? Do they have a pain management clinic near you. That can be helpful. I still have pain when I take a deep breath in my sternum after the open heart surgery. .but it is not that bad That;s another reason I am scared to have another surgery in my chest. Your thoughts appreciated
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@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.