Thursday, August 27, 2009

My Diagnosis Story

By comparison to most people who are diagnosed with carcinoid, my experience from initial symptoms to diagnosis was fairly quick. I have read about many people who go years dealing with all sorts of frustrating symptoms and constant misdiagnosis. I feel extremely fortunate with my own circumstances and that my diagnosis came fairly quickly and early, and that I had not had any noticeable symptoms to deal with.

I begin with a good concise definition of carcinoid from US News & World Report:

"This type of tumor is considered separately from other lung cancers. It is rare--there are only about 1,700 cases of this cancer a year, according to the American Cancer Society. These growths arise from specific cells responsible for secreting hormones like adrenaline. Most often, carcinoid tumors are found in the gastrointestinal tract, but they can also be found in the lungs. Typical carcinoids grow very slowly, while atypical carcinoids grow marginally more quickly.

Both have relatively good prognoses, especially compared with other types of lung cancer. The ACS says that the five-year survival rate for people with typical lung carcinoids is about 95 percent and that the rate is about 70 percent for people with atypical lung carcinoids. Most are cured with surgery, and chemotherapy and radiation are used primarily in the rare cases where the cancer has spread or cannot be removed surgically."

Here's my carciniod story:

May 26th

Out of nowhere, I coughed up a little blood clot. This has never happened to me before so needless to say, I was freaked out. I went to my Dr a couple of days later just to be sure it wasn't anything serious. My Dr didn't think it was, but to be certain, he did a chest x-ray. The chest x-ray showed that the diaphragm on my left side was elevated. It basically was not moving up and down the way it was supposed to be. Still not too concerned, but he thought I should see a specialist just to figure out why it was elevated.


Went to see the Pulmonologist and he ran further tests. I had a CT Scan that indicated enlarged lymph nodes in my chest. His initial concern was that it could be lymphoma, but he needed to do a needle biopsy to be certain. (My needle biopsy was through my back, but the picture is fairly accurate otherwise) I had a needle biopsy at the end of June on one of those enlarged masses. This test is what indicated that it was carcinoid.

I was told by the pulmonologist that carcinoid is a very rare type of cancer. It stems from our neuroendocrine system and is different from other types of cancers. Chemo and radiation do not seem to affect it, and he was not "satisfied" with that diagnosis. Carcinoids are rare in general and in the lung, they are even rarer. So with that, my diagnosis made me a very interesting and special case.

He consulted several oncologists and cardiothoracic specialists in San Antonio...they all decided I needed to go to M.D. Anderson Cancer Center in Houston for treatment. So, I did!


I love this pic because that is so not true. "Yes, mam, you're having a PET scan, so just let me consult you here and you can wear slacks."
At M.D. Anderson, my cardiothoracic surgeon gave me some interesting news...apparently my left lung was collapsed! I did not know this, nor had I had any symptoms of that, so I had just been walking around with no left lung. No wonder all the doctors i saw immediately asked, "Are you breathing okay?" And, yes I actually was. I've never really been sick, or had any weird bouts of pneumonia or bronchitis, so I only ever experienced the blood clot incident. In any case, all of the tests the Dr. ran were to figure out a treatment plan. Obviously concerned about removing a 27-year old person's lung, he needed to be sure there was no spread and that I was okay otherwise.

So, in the course of a month, I had....

1. Pulmonary function test... to check how I was breathing - I was breathing well.
2. Bronchoscopy - to see the tumors and make sure they were where they thought they were - they were all confined to lung and lymph nodes.
3. Chest CT, PET Scan, and Octreatide Scan - to see where I glowed inside with carcinoid cells (only my lungs and areas they suspected).

After all of that, we decided to proceed with surgery for removal of the tumor and area lymph nodes.


I had my thoracotomy on August 24th. My surgery went well, in fact the tumor was larger than expected, so I did lose the left lung. Sine I had only been using a lung for a while, I don't really notice a difference. I am sore and in pain, but feel good otherwise. Nervous as ever and bored at the hospital, but looking forward to recovery.


  1. AHH! I don't like that my Stephanie was poked and prodded at so much over the last three months!

  2. Wow - it's crazy that you could have a collapsed lung and not know it! Our bodies are pretty amazing. (I loved your comment on the PET scan picture by the way.) Sounds like you went in to surgery and testing with the right attitude - I'm grateful that a year later you are cooking yummy food at home :)