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Atypical carcinoid tumour of the lung
Neuroendocrine Tumors (NETs) | Last Active: Apr 7 7:37pm | Replies (11)Comment receiving replies
@auntiemum, I've added your discussion to the Neuroendocrine Tumors (NETs) Support Group as well. See a list of related discussions here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=carcinoid%20lung&index=discussions
I can imagine how upset you are. I also understand your mind whirling around the questions like how could this happen and who is responsible. How could you not be asking these questions?
Underlying all those concerns, I bet, is the main concern. What happens now? How do you work with your team to get the best care in the absence of the tumour? I don't want to say what to do, but if it were me, I would focus on asking questions about your care and getting answers to build confidence in the care you will receive. This incidence should get you the best care going forward.
Would it help to start a list of questions together? Here's my start:
- Without the tumour, how will you learn more about my cancer to make the right treatment choices?
- What tests, biopsies, imaging studies will be used to confirm the diagnosis and plan treatment?
- What details will be missing without the tumour?
- What are the risks and benefits of the treatments option?
- How will you know the treatment is working?
What questions would you add, @auntiemum?
Replies to "@auntiemum, I've added your discussion to the Neuroendocrine Tumors (NETs) Support Group as well. See a..."
Thank you so much for your response and support. You’ve already made me feel better. I’ll definitely copy all those questions and ask them, as all that’s been going through my mind, is what happens now. I’m new to the sight and wasn’t aware there was a more specific group so that’ll certainly help. I had put off reaching out for help as I didn’t want to be bombarded with horror stories, so this is great.
I spent 12 hours in A&E yesterday as I have an impacted bowel, which the dr suspects I was discharged with. I was vomiting and unable to eat from the day of the operation and have lost two stone since 29th of Feb. But I’m taking the treatment now and can feel it working. Honestly, although there have been mistakes made, I’m incredibly grateful for our NHS, as they still try their very best to help patients.
That’s why I’m more concerned about my health that blaming individuals. This, to me, was an honest mistake/accident rather than an outright act of negligence. My surgical consultant stated it’s never happened in the history of the pathology department.
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I agree. The mystery will likely never be solved. Focus on the path forward for now.
Forgive me if this was answered but since the nodes they harvested in the bronchoscopy revealed malignancy, isn’t the next step Oncology? And is that surgeon who you want leading the team? I’d consider going just with pulmonologist and oncologist at this point.
Colleen gives great advice.
Best wishes….