Atypical carcinoid tumour of the lung

Wow. Did the doc harvest any lymph nodes when he excised the tumor? I guess I’d say if so and if they are negative for pathology, you can be reasonably confident that whatever it was, it wasn’t spreading to predictable areas. And I’d request/demand annual nose to knees PET scan that they pay for. To look for spread.

Yes, I assume the lymph nodes were harvested, as the consultant only mentioned the tumour going missing and the fact it hadn’t been biopsied. The affected lymph nodes were biopsied during the bronchoscopy, which was how I was diagnosed. I know they’re in a panic now because patients normally, according to all the paperwork I received before the operation, meet the consultant three weeks after the op and they’ve sent very little information to my own dr with absolutely no mention of the tumour. We don’t have to pay for treatment here and I’ve been given extra scans.

I actually woke up due the pain as they wheeled me out of the theatre to give me a ct scan before deciding the op was completed, for fear they had lost it inside me. The pain was unlike any I’ve ever felt before. I couldn’t scream but sounded like a wounded animal. I must have lost consciousness again because the next I remember was them telling me to wake up while o was in the scanner and they asked me to hold my breath until the count of one. I remember the pain and noise I made every time I breathed out. It actually upset last me to remember it. She said they removed “lots and lots” of the surrounding lymph nodes. One was near the top of my middle lobe, so relatively far away from the tumour. It’s probably silly but I have a fear that a cell of the tumour could have been left behind if they’ve cut through it or something. It was only 16mm but still big enough to see with the naked eye.

It still feels very surreal. I went for the op just before 9am and my kids were told nothing until 5pm, even though they repeatedly asked. That’s upsetting to know.

It was done via keyhole surgery as the original plan was to remove the section (there are 5 in the inferior lobe) but because they couldn’t find it in theatre after removing it, she kept err moving sections until my whole lobe was removed. So it was lost as soon as it was removed from me! I can’t understand how that could happen. Did an assistant drop the tissue, stick their finger in it or what?!

Sorry for the grammar spelling mistakes in my post. Bit upset.

@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?

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….

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.

I only know that my cancer consultant, who was a younger woman and admitted to never having heard of a carcinoid tumour, told me I was being discharged from her care and would be under the care of the thoracic surgical consultant. I think that was because the surgeon is the one who deals with these tumours and actually has more experience. I’ll learn more during my face to face with her. I’ll also ask more about why I seem to be discharged from the cancer care team.

From reading through the postings you may want to visit Ronny Allen’s website. He lives in the UK and has gathered volumes of information as it relates to Neuroendocrine Carcinoma. https://www.google.com/url?q=https://ronnyallan.net/&sa=U&sqi=2&ved=2ahUKEwiS0fyZgq6FAxWOjYkEHdn_DWEQFnoECBcQAQ&usg=AOvVaw2vgYMu1RetfM65zMxGCn7E

Wishing you many blessings on your journey.

CEB

Frankly I would be content with setting those surgeons aside. Maybe a pulmonologist and oncologist instead as your care team. If you need thoracic surgeon in future get a new one 🙂

Thank you, that’s great, it’s such a small population compared to America so it’s hard to find people that know about it.