Atypical carcinoid tumor (the lung cancer that wasn’t?)

[atcrunner]

Hello all!

April 23rd they found a mass in my wife’s lung (bronchoscopy) that they said was cancer. We met with a thoracic surgeon and he says it looks like a carcinoid tumor and we’ll just cut it out. Pathology came back and confirmed “atypical carcinoid tumor.” So she has a cancer in her lungs, not lung cancer?

Went to Emory for a second opinion and another thoracic surgeon confirmed that the standard of care is lobectomy and he would recommend the lower and middle lobe (it’s in the lower right). 

Now the more we read the more questions we have. Apparently there’s a ki67 score and hers is 30%. 

Does anyone have any experience with this or any resources we can look at. Trust the surgeons? Meet with oncologist? Find a neuroendocrine specialist?

We’re in the Atlanta area.

edit: we’re set up for PET scan and pulmonary function test next week  

Thanks!

[BridgetO]

It's my understanding that a carcinoid in the lung is a type of lung cancer.  I generally don't suggest a lot of googling early on in the diagnostic process, but you might want to check the website of the American Cancer Society. Their info should be pretty reliable.

[Rower Michelle]

Hi David-

There May be some group members here with a similar experience.  What I can share with you is one of our friends in KC was diagnosed with a very rare form of advanced breast cancer.  Even though we have a few NCIs accessible here in the mid-west, she went to four different programs until an expert was located.  It made the difference as it’s 18 years later & living a full cancer free life.  

Bridget is right in that the internet is a scary place. At our clinic they have a “15 minute” guide.  Any longer than that on a topic search can contribute to unnecessary angst. 

Be an advocate and keep pushing until you’re comfortable with the medical team.  A good onc will understand this & help you find the best course of treatment.  Hope this is somewhat helpful. 

Michelle