Any Information About Atypical Lung Carcinoid?

On 12/9/2007 karinA1 wrote:

Hallo! A very close friend has just had a carcinoid removed from her lung (and with it a whole lobe). It was diagnosed an atypical carcinoid. But the histologist also said, that it was extremely fast growing, even for an atypical one. Has anyone out there heard of such a carcinoid? Where does a carcinoid end and a carcinoma begin? I'd be happy about any information, I'm very worried about her.

There are several different kinds of carcinoid cancers but the best place to get info on this rare cancer is www.carcinoid.org. They have all of the latest info and treatments on this rare disease and their search area is very helpful. You're a good friend to try to learn as much as you can about this cancer.

Hi ,

I also have fairly aggressive atyp. lung carcinoid . Who is she seeing for care ? has she had a Ki-67 value for her tumor ? chromo a ?. She should consider aggressive treatment , but at the same time have much reason for hope , possible cure , and a positive spirit !!   I have researched this quite a bit , and would be happy to share where I am with it all .

hi back and thanks for replying!

actually i'm posting from Austria and i don't know the name of her physician(s) nor do i know what a Ki-67 value is. Since she has started her chemotherapy (this week she's had her second round, the first was really hard!) I didn't get a lot of opportunities to talk to her. i hope i'll see her in about a week then I'll ask her for details. thanks also for your encouraging words - if there's one thing she has for sure then it's a positive spirit!

What kind of treatment are you getting? did you also have a sugery? Who are you seeing for care?

all the best for you (especially a lot of positive spirit! send you a package of positive thoughts to add to it!)  and i'm looking forward to hearing from you. 

Ki 67 is a rate of proliferation index ( a good measure of aggressiveness )

What chemo is she on ... getting radiation as well ?

I had surgery in aug 07 to remove the primary in my lung also many nodes . Went to Sweden on my own , just to make sure there was no other spread and found one node left behind from surgery . Had it removed 3 weeks ago . I feel good about that but my chest looks like a road map !

The test I had done in Sweden is available only there 5-C-HTP PET . Very sensitive and very specific especially for lung noids . I will start radiation in a few weeks to the chest . I also am awaiting tests on my met to check for chemo sensitivity ... before trying chemo ..and having angiogenesis testing done to try out some novel treatment options if possible .

I was an extrmely competetive triathlete up to the day I was diagnosed.

I plan on competeing again this summer !!!!   keep smiling

Karin...

Woltering at LSU for angiogenesis and Quarterbacking everything

Kaiser at UPenn for surgery

Granberg at Upssala for PET

Vreeland for radiology

probably Li in Princeton for rad. oncology

Sloan Kettering for consult and second opinions

have a heart guy , pulmonologist , primary doc , and others to bounce stuff off of ... and have been to the big places in Boston early on tryiong to get to the best and brightest in the thoracic oncology field . Best place for guidance is the carcinoid foundation . or caring for carcinoid . MOST important .... get to a carcinoid specialist .   

hi poolguy!

wow, that's quite a record of treatments and doctors! thanks for all the information. I pass on everything to my friend sondra and try to translate as well as i can.

today was a good day: i could talk to her for the first time in 20 days as she is slowly recovering from her second chemo-portion. i asked her for more details about her carcinoid and her treatment:

- her carcinoid showed mitose rates and morphology of atypical carcinoid, but with high Ki-67 (her "files" said something like "15-20%" - does that help you any?), almost like large cell carcinomas. The tumor had entered (?) the lymph as well as blood vessels. one of the lobes nearby was removed with the primary - so it's a 2 A stage tumor.

chromo a is low  

She is getting chemo but no radiation. She is being treated with etoposide and cisplatine in medium dosis.

here are some of her questions to you: What chemo do they recommend you, with which expected effects/prospects and what kind of sensitivity tests did they do (they did nothing like that with S)? S read a German study from University of Heidelberg saying that chemo is not proven to be successful in treating carcinoids of stages higher than 1. Not very encouraging as she is thinking about breaking up her chemo after the next session anyway.

She's definitely going to ask for that PET-scan you mentioned! and she's going to talk to another doctor (Kreys), who's supposed to be THE austrian expert on carcinoids.

no to sth completely different: we've been wondering what kind of "pool" it is that you named yourself after: The one you play on a green table or the  one to swim in? and we don't dare to ask you how old you are (politeness I guess), but we will try to elicit the information by telling our age: S is 34 and i'm 39.  

looking forward to your answer, good to have someone out there to talk to!

All the best to you!

Karin - and Sondra of course!