Caricinoid Tumor

SamFitz68 said:

Lung Carcinoid Tumor
This past Wednesday, May 5, 2011 I found out that I have Stage IIIa Carcinoid. The tumor has wrapped itself around my right airway. On May 13, yes Friday the 13th, I am scheduled to have my right lung removed. Because of the size of the tumor and where it is located they have to remove the entire lung. On that day as well they will check for mets. My surgical oncologist told me, due to the size of the tumor, that I have had this for a very long time. For years I have had doctors tell me that the tumor was just an enlarged lymph node. I am absolutely terrified. I am only 42, the mother to 3 beautiful, healthy, young adults who still need me in their lives. I am also the very proud Gammy to the most beautiful little baby girl. I was just wondering if anybody else has had a Carcinoid tumor in their lung and how they are doing now. Any information I can get will be helpful. I am so appreciative of this site. God Bless!

Lung Carcinoid tumor
Hello, I hope your surgery went well. I was diagnosed in June with a Neuroendocrine Carcinoid tumor in my right lung also invading my airways. I had my lower right lobe removed and middle lobe resected on Aug. 31st and wanted to know how your recovery and follow-up are going. I too was told thet this tumor had been growing for years and they only found it due to a routine chest x-ray. I had a unexplained cough for the past 3 years that many doctors chaulked up to asthma and only treated that (never had before the cough started). Only when the cough got so bad that it took my breath away and caused grey-outs did they think it could be more. It is amazing how many doctors don't even know to look for these type of tumors. My pulmonologist said that he has only seen 3 cases in over 35 years of practice. I also found little info on this type of cancer and even had one doctor tell me that it wasn't even a cancer so I had nothing to worry about! Glad for sites like this that have real info. Currently I have had a PET scan and no other tumors were found. Have you had a folow-up Pet scan? I hope if you have it was good news. Also like you I am a father of 3 (no grandkids yet)and want to be here for a long time to come and share in their lives. I hope you are well and recovering well.

Colleengh said:

Hi, I am a 39 year old with
Hi, I am a 39 year old with a complicated GI hx. I recently had an octreoscan which showed "hot spots" in my right lower quadrant, I had elevated levels of 5-HIAA.I have had a terrible few months in and out of the ER with severe right and left lower quadrant pain, flushing, bowel issues, nausea, loss of appetite and so on... I am waiting for an appt hopefully with Dr. Warner in NYC. At this point I feel very lost and confused. It seems like the Dr's I am working with have no idea what to do with me...any suggestions for me??

Elevated 5HIAA and positive octreoscan
Colleen - It looks like you posted some time ago and haven't had a response. I rarely check this site, but noticed your post and wanted to reach out. As a metastatic carcinoid patient, I can sympathize with the doctors not knowing what to do with you. Your best bet is to see a specialist (I've heard good things about Dr. Warner, so hopefully you have had your appt or will soon). Don't give up - seek out the experts and listen to what they tell you. You can live a very long life with this if you have the appropriate care.

If you have questions, feel free to e-mail me offline @ sklise@bresnan.net.

Best wishes,
Suzanne

klisesr said:

Sandostatin side effects
Hi Maureen - Sorry, but I haven't been on the site much lately. Hopefully your mom is gradually feeling better - it literally took me 4 months to get beyond feeling terrible after my injections. I still have my moments when I wonder if the Sandostatin is worth it, but I have a friend who underwent liver resection, was told she was cured, and stopped Sandostatin. Two years later she was back for a second liver resection - she vowed never to go off the Sandostatin again, and now she's 5 years out since her last surgery. Liver resections are difficult, so that is my motivation to stick with the medicine. I had liver resection because surgery is still the best treatment option for carcinoid, if it is possible. I had over a dozen tumors on my liver, but they were relatively small. Bottom line is that a "cure" with carcinoid is highly unlikely once liver mets appear - but several folks have lived relatively long lives despite this. I love my oncolytic surgeon (Dr. Rodney Pommier in Portland) who specializes in treating carcinoid patients.

I'll try adding you to my friend list, then you can contact me directly (I assume). I'm fairly new to this site.

Please update us on your status

Hi,

My husband was diagnosed w/gastric carcinoid in 2011. Said to be slow growing but it was aggressive; seems everything we were told in beginning was wrong. Because the first surgeon was not experienced enough w/carcinoid, she did not find all the tumors that were supposedly already in other places. In Feb 2012 tumors were removed from his liver and his diaphragm, colon and pelvis. He was given IV chemo and montlly 30 Sando shots (despite having negative Octreotide scans). The cancer is back again in his liver, now we're being told options are RFA, chemoembolization, a clinical trial with CAPTEM chemo, and various other things. All have risks and no two drs agree on what's best. Any suggestions? And how are you doing now? What's worked for you since your last post? I am desperate to help my husband.

klisesr said:

Elevated 5HIAA and positive octreoscan
Colleen - It looks like you posted some time ago and haven't had a response. I rarely check this site, but noticed your post and wanted to reach out. As a metastatic carcinoid patient, I can sympathize with the doctors not knowing what to do with you. Your best bet is to see a specialist (I've heard good things about Dr. Warner, so hopefully you have had your appt or will soon). Don't give up - seek out the experts and listen to what they tell you. You can live a very long life with this if you have the appropriate care.

If you have questions, feel free to e-mail me offline @ sklise@bresnan.net.

Best wishes,
Suzanne

My boyfriend

Was diagnosed with carcinoid cancer a little over a year ago. In 2009 he had a portion of his left lower lung removed after they found a tumor. They thought he had asthma and finally did scans after he went to the ER coughing up blood

That was supposedly the end of it, but then last year he started to have "flashes" in his eyes. They discovered 5 tumors in his eyes and eventually tumors in his liver, lower spine and pelvic bone. He away treated with radiation and chemo, but they have now found tumors in his upper spine as well as two in his skull. 

I know his type if cancer is rare, and it seems to be atypical even for carcinoid. He has not tested positive for carcinoid syndrome and just finished radiation for his spine and head. He has scans this week and they will decide if they should start chemo. 

 

lisa72 said:

Hi Brenda-
I had had some stomach problems off and on over the years. I had been diagnosed with IBS, nervous stomach, etc. Finally, after having a stomach flu that lasted 2 weeks, I was referred to a stomach specialist. Lucky for me my doctor was very very thorough and recommended that I have a colonoscopy to rule out colitis/chrones disease. During the exam she was able to get a peek into my small intestine. It was there she located a small "nodule," as she called it. She biopsied it and it turned out to be a carcinoid tumor (only 3mm). I had no signs of carcinoid syndrome yet. They did test my 5HIAA levels. I'm not sure what the levels were or if I even had any. All I was told is everything was normal. I keep thinking this is all to good to be true.
I would love to get any info/links that you might have. My email address is mpaiva@attbi.com.
I hope things are going well for you. You are in my thoughts & prayers as you face the unknown. Take care!
Lisa

Hello, I recently read your

Hello, 

I recently read your story and hope you are feeling better. I am a 20 year old female who is worried that I might have some symptoms of carcinoid tumors. I have been frustrated and desperately searching for some relief of my symptoms for over three years now. I have been to several gastroenterologists and other doctors who have been unable to diagnose me. I was hoping to reach out to you and see if you could describe some of your symptoms. I have been told repeatedly that I only have IBS and should learn to live with it but I just have a feeling that it's more than just a simple IBS. I have problems wit's flushing ,abdominal pain, especially after eating, bloating, back pain, loose stools, upper abdominal pain, swelling of the face,around eyes  and legs and abdomen, everything seems to be made worse by exercise. And other symptoms as well. Could you shed light on some of your Symptoms? Thank you so much. I also have not gotten a colonoscopy yet and I was wondering if you thought that would be a good suggestion?