Typical Carcinoid Tumor in Lungs

I recently discovered that Baylor University Medical Center in Dallas, 1.5 miles from my house, has opened the Neuroendocrine Cancer Research & Treatment Center in the Charles A. Sammons Cancer Center. There has been zero publicity about it. This is the place where, in 2000, three doctors told me a carcinoid was not really cancer and I had nothing to worry about. A small rectal carcinoid — .4 cm — had been discovered during my first colonoscopy. It showed up again in 2010 in the same spot as the first. Luckily, the same sharp-eyed gastroenterologist spotted it and biopsied it, then I had surgery to remove it and a lot of surrounding tissue. I do not think I have any symptoms now, but I want to evaluate this team for myself and, if they pass the test, establish a relationship. I have a colonoscopy every 5 years and a flexible  sigmoidoscopy all the other years, a regimen suggested by a specialist I found in New Orleans in 2005. Every time I have diarrhea or sweat excessively or my face is red, I worry the cancer is back. I would like to feel safe, if indeed I am. My appointment is tomorrow, March 12. 

@mgreene I am so pleased to hear that Baylor has opened a NET Research/Treatment Center near you. Have you ever had a 68 Gallium Scan? See this discussion for more information about this new scan, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/?utm_campaign=search

If you are comfortable doing so, I would love to hear an update from that appointment.

Either way, though, I look forward to hearing from you again - as we all learn from each other.

Teresa

Hi there I am diagnosed with typical carcinoid that hssn’t Metastized the size is 1.5 , I live now in Sweden they haven’t given me any other options but loboctomy , can anyone help in this matter or suggest any alternatives as I am scheduled on the 9th of July for my operation , thanks

Hello @ghassan and welcome to Mayo Connect. I appreciate your sharing about your lung carcinoid. While carcinoids are rather rare, lung carcinoids are even more rare. I would like to introduce you to two Connect Members who have also experienced lung carcinoids, @joanney and @dzerfas. I hope that they share with you their experiences.

In the meantime, here is a link to an American Cancer Society website that discusses lung carcinoids, https://www.cancer.org/cancer/lung-carcinoid-tumor.html. Here is another article from the European Journal of of Cardio-Thoracic Surgery, https://doi.org/10.1016/j.ejcts.2010.08.036

I see that you are scheduled for surgery on July 9th. I wish you well and I look forward to hearing from you again.

Teresa

Thanks Teresa for the prompt answer , I saw the oncologist on the 18th of June to discuss the operation options I was shocked when they told that I am scheduled to be operated on , the 21st of June , which I rejected , I asked about the " Wait and Watch " option , are there any statistics to back up such option ? He gave me only one option which is lobectomy , my carcinoid is in the middle lobe of the right lung in the middle of the lobe on the bronchi , as I look at US cancer society site it shows so many other options , your help is really appreciated .

I was diagnosed with a .4c rectal carcinoid in 2000 and a recurrence in 2010. Four doctors — internist, gastro, invologist and research oncologist — told me in 2000 that a csrvinoud is only cancer-like, not really cancer. And that I had nothing more to worry about. My instincts told me they were incorrect, and of course they all four were wrong. It took awhile but I found one of three carcinoid specialists in the US, and traveled to him for a consultation. All that is to say find a specialist in lung carcinoids, even if it means traveling and extra expense. I wish you the best.

Hello @ghassan

I am glad that you did not allow yourself to be rushed into an earlier surgery.
The most important thing is to consult with a Carcinoid specialist. From my understanding there are many in Europe. Here is a link to a website that will give you names and locations of carcinoid specialists throughout the world, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/ In looking through the list there seem to be several in Sweden. Please keep in touch.

I look forward to hearing from you again.

Teresa

Welcome to Connect:
I was diagnosed with Non Small Cell Adnocarcinoma 11 year ago with a CT scan at Mayo Clinic. I cannot tell you how shocked I and everyone who knew me was. I never smoked. Within 2 days i was in VATS surgery, all of my upper left lung and a wedge in my lower left lung was removed. I the past 11 years the research world of lung cancer has gown tremendously. I understand how emotional a diagnosis may be. I also believe there are now targeted therapies
for just about everyone.

The key to "Quality of Life" is proper diagnosis and proper treatment. I commend you for asking questions. I feel that I am alive today because I was
fortunate to be diagnosed and treated with an amazing team of doctors...who have continued to follow me. It may be very helpful to get a second opinion
regarding your diagnosis and treatment.

With one lung I have run a 5K race in every state and a 10 K in 4 of 7 continents. This fallI ran my first 10 mile race. I share this only because, I have
learned the importance of paced breathing, keeping active and not sitting on the sofa watching TV. We bicycle 18 miles a day in the summer and
Cross Country ski 6.5 miles every day, or run a 10K.

I love the sounds of your spirit, I have a feeling you are not one to give up. With lung cancer...Never give up! I know people who are stage 4 and have been kept living with a great quality of life because of targeted treatments.

Think about where you may want to go for your second opinion...and go if you can. In the meantime think about reading a book titled HAPPINESS by
Dr Amit Sood...the author. This book clearly helped me accept lung cancer and carry on moving forward.

Let's stay connected. And Never give up!

You deserve a cyber hug,

Best,

Hello @ghassan

It has been awhile since you last posted and I was wondering how you are feeling. Have you made any decision yet regarding treatment (or not) for your lung carcinoid? Have you received any other medical opinions?

I hope you will post a follow up as you feel comfortable doing so, @ghassan.

Hello Group...Just remembered I was a member here. And yes still chugging along with 2 whoppers. right lung and media sternum. Not much change though. Currently on Lanreotide injection every month and just stopped Afinitor. Lots of difficulty by radiologists to measure tumors accurately. Is it bigger...smaller or the same. The last CT very confusing to me but definite enough to stop Afinitor. Dr. Was looking for shrinkage. the wonderful word stable keeps popping up or even worse if the Radiologist looks sideways it looks the same. My nets are non-productive so it is also difficult to understand what symptom is actually attributable to the net. Crazee. right now I am going through an itch phase....itching all over and deep like a skin crawl. I have other afflictions but the NET gets everybody's attention. Everyone is learning.Thanks for reading GAP