Describe your recovery from lung NET surgery

@haelsky Yes, he suggested the hospital he's affiliated with in Boston, rather than staying in the suburbs. I'll have to call and see what availability is like.

@haelsky I have mentioned this before, sorry if I am repeating myself to you in particular. Have you looked into a medical advocate? There are many avenues. Some are through churches, etc. Some are covered by Medicare, such as Solace. For Solace you reach out to them, they review your case and contact you about accepted. Then you reach out again and they pair you with someone they feel could best help you. It's just a suggestion. Blessings 💕

@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.

@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?

@wushirl By the way, could you explain nerve mapping please? TU

@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

@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

I am wondering about recovery at home and what are some of the issues people faced once discharged from the hospital. after having had a lobectomy. I am 77, live alone and am facing a right lower lobe lobectomy. I know everyone's recovery may be different, but in general did you need help at home and what type, and for how long. Were the doctors able to effectively manage pain at home? . I know they are much more cautious about dispensing pain killers now. How long before you can drive ? I am not keen on going into a nursing home to recover.
I am quite fatigued now and am wondering if getting the carcinoid out will improve that. I also get short of breath sometimes on minimum exertion. Did surgery seem to help with that issue once the tumor is removed? My concern is that the oncologist and cardiologist don't have a clear idea if my shortness of breath is caused by the NET or the heart disease. I had a triple bypass in 2020 and some major complications from it so having another chest surgery is something I am pretty anxious about. . Thanks for any information. I am trying to weigh the risk benefit of having this surgery

You are asking good questions, @stephanieann. When you live alone, it is important to assess how much help you might need post-surgery. As you wisely noted, all of us recover differently after surgery; however, your medical team might be able to offer some general guidance on what your recovery might look like. So, these might be good questions to ask your medical team.

Have you been told how long you will be hospitalized after surgery? You might ask for a social worker to visit with you before your discharge to see what services might be available to you when you return home. Hospital social workers are a wealth of information on post-surgery matters and the services available to patients.

It would be good to consider the support network you currently have in your life. Do you have friends and family that you could call on if you need help with transportation, food, or picking up prescriptions? Do you belong to any groups such as churches or community groups that could help you? Could you use food/grocery delivery services? Could you prepare food in advance to freeze and have it ready upon your return from the hospital?

I see that you are weighing the risks/benefits of lung surgery. I also see that you have had triple bypass surgery in the past. After the heart surgery, was there a reduction in your symptoms? Has there been any change in your heart disease since your last follow-up appointment with the cardiologist?

I realize that there is a lot to consider. Has your surgery already been scheduled?

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?