Thursday, January 27, 2011

Educating the Medical World about Carcinoid Cancer - One Dentist at a Time

I had my first appointment with my new dentist, Dr. Goldberg. Of course, in my new patient packet, I had to fill out a general Patient Medical History. You know the form; it's the one that lists a million possible illnesses - diabetes, heart disease, cancer etc - and you just check "yes" or "no" next to each one, indicating whether or not you have ever been diagnosed or treated for the illness in question. I have to admit, it felt a little weird checking off the "yes" box next to "cancer" for the first time, and writing in "carcinoid" in the space provided for "type".

After routine x-rays and a cleaning by a very friendly dental hygienist, I met Dr. Goldberg - who started with the normal chit-chat while reading over my file. Suddenly, he stopped mid-sentence and asked, "Carcinoid cancer? What's that? I've never even heard of that before."

I launched into my normal spiel: "It's a rare form of cancer caused by neuroendocrine tumors, which secrete hormones. Unlike other cancers, these types of tumors can grow in many different places, including the lungs and digestive system."

Dr. Goldberg: "How did they find it?"

Me: "They actually found it by accident. I was having surgery to remove a potentially cancerous ovarian cyst when my doctor thought my appendix looked deformed so she removed it; the tumor was inside. They think I must have had the cancer for at least 5-years becuase the tumor was so big, and I had to get several lymph nodes removed and have a right hemicolectomy to stop it from spreading."

Dr. Goldberg: "What's a hemicolectomy?"

Me: "It's when you take out half of the colon. I had it done at Sloan Kettering, and they did an amazing job. The most incredible part is that my surgeon was able to do the entire surgery through one port - meaning, one laparoscopic incision."

Awkward Pause... followed by me asking Dr. Goldberg if he wanted to see the scar. He said he really did, but didn't want to ask. So, I gingerly, slightly lifted up my sweater to reveal the small quarter-size scar above my bellybutton.

He gasped: "I can't believe it. That's absolutely amazing. They were able to get all that out through there?" Yup. Believe it doc.

It is insanely crazy when you really think about it - what they can do with surgeries now. However, even with the less-invasive surgeries, it's important to note that not all laparoscopies are the same. In fact, Dr. Nash was the only doctor I consulted with who could do a single-incision laparscopic right hemicolectomy. Even the renowned NJ Cancer Institute, where my surgery was initially scheduled, would have made at least 3 incisions for their laparscopic procedure. One port not only reduces scarring (I already had three from the first surgery), but it is also safer because there is only one potential infection site. This was especially lucky for me since my wound did get infected...can you imagine if I had three infected, open wounds? Just another reason why (as my students say): I <3 Sloan Kettering.

Three-Incision Laparoscopic Surgery (top) - NJ Cancer Institute
Single-Port Laparoscopic Surgery (bottom) - Sloan Kettering


  1. This sounds exactly like the conversations I've had with every new doctor, nurse, x-ray tech, etc...over the past year. The added bonus for me is that I have to reassure the x-ray tech that, yes, they did do it right...there is only one lung. :-)

    Wow, that was a really small incision. My scar is about 6 or 7 inches and because of my tumor size, the less invasive surgery was not an option, but it's very neat and smooth.

  2. You have been a wonderful and needed adovcate! Oprah stop. I encountered the same sor of thing with Post Polio Syndrome. The National Polio Organization put out a general letter to all physicians explaining it. Maybe the Cancer Foundation could do the same with Carcinoid Cancer ?

  3. Stephanie - I can only imagine! Do you ever get tempted to mess around a little.... look at them quizzically and say, "what do you mean there is only one lung? I had two when I got here!" Your story is so incredible - did you ever apply to Dr. Oz? We just had a kid in our town who had a different rare disease who had to have a DOUBLE lung transplant! He's doing great. Amazing. I bet that scar will fade to nothing - unfortunately your surgery was way more complicated than mine...I'm so glad you are feeling good and taking pictures and baking treats!

  4. You know, I have been tempted to joke around with the techs, but I never do! I did send my info to Dr Oz. haha. I might be too shy to ever go on TV, but would be willing to talk about my story.

    Wow...a DOUBLE lung transplant...that's amazing and I'm glad he's doing well.

  5. If you are interested in neuroendocrine tumors / carcinoids a new scientific website has started that focus only on these diseases.


  6. Thanks Roger, Looking at it now - I'll add it to my links.

  7. Amazing how they can do surgeries now-a-days.
    I joined your page because I was just diagnosed with a 2cm appediceal carcinoid tumor and will be under going a hemicolectomy on Friday of this week. I am petrified but have been calmed by your grace in your similar situation.

  8. Hi Sarah! I hope you find some useful stuff on my blog - if you click on the "diet" label below, it should take you to an entry about what to eat post-surgery...that was the only thing that was a little tricky. My surgery was in July and as you can see from my latest blog, I'm eating like a champ now! It's silly for me to say, "don't be scared" because everyone is nervous before major surgery...but I promise a hemicolectomy is not as bad as it sounds - You'll do great! I'll keep you in my prayers and thoughts on Friday. If you want to send me an email at any time - PLEASE don't hesitate: There are a lot of great people in the Carcinoid community, you will find support at every turn. Hang in'll be over before you know it :) (PS - my one BIG surgery tip is to press a pillow over your belly on the ride home from the hospital...I soon learned that it really helps cushion the bumps.)