Carcinoid Tumors

[SANDRAGILBERT77]

I was diagnosed with a carcinoid tumor the size of a pencil eraser inside my appendix 24 years ago. I have had no problems with carcinoid syndrome that I know of. However, I was not told what symptoms to look for. I would assume by now that when they removed the appendix, all tumor was removed with it. Is there anything I should especially look for now. I am 67 years old, and still actively working. Sandra

[ramiller]

Good Morning,

I was diagnosed with a rare type of carcinoid tumor of the ileum in 1996 and was told one of the most common symptoms was flushing...your skin will turn red and luckily I have not had to deal with it....thank you Jesus.

Take care,

Roxi Miller

[stephalee]

I have just been diagnosed with metastatic carcinoid tumour (spread to liver, likely started in pancreas, awaiting surgery). I had absolutely no symptoms. Routine blood test showed anaemia (low haemoglobin) and elevated inflammatory marker (CRP), so doctors continued testing until we came up with the diagnosis. I am only 35. But for the routine blood test and followup, I would be none the wiser.

Most patients with carcinoid tumours only get symptoms when:
a) tumour is big enough to press on surrounding tissue causing pain and malfunction (eg. bowel obstruction) or
b) the hormones (usually serotonin) released by the tumour cause carcinoid syndrome (diarrhoea, flushing, etc.).
Both late signs!

Given its often insidious onset, I would recommend getting your doctor to perform periodic chest/pelvis CT scans (or ultrasounds) to look for evidence of tumour recurrence or abnormalities (liver spread is easy to spot), and perhaps also periodic blood tests to monitor for abnormalities (full blood count, liver function tests, inflammatory markers, plasma serotonin or urinary 5HIAA, a serotonin byproduct).

My GP knew very little about carcinoid tumours, so I would also recommend being monitored by an endocrinologist, given your history of carcinoid. Get your family doctor to write a referral for you.

Who wants to let cancer rule your life? Educate yourself and keep informed to improve your chances of beating it forever! Good luck.

[moon123]

what to do if your Oncologist says not able to operate because the tumor is too close to the vocal cords but the Thyroid specialist says the thyroid must come out?
still awaitng results on the bi-op as to what but it is suspected to be carcinoma....

[ramiller]

That's a tough one..can your oncologist recommend another surgeon specializing in this type of surgery?
I was in a similar situation..I had two oncologist reviewing my case and it was stressful when they didn't agree on a treatment plan. There may be other options..clinical trials. I took a study drug for three years and it worked...Good Luck! Keep me posted...Roxi, I will pray for you and your doctors to persevere..ask for God's guidance and special blessings! Never give up looking for a solution..

[vorp1]

[quote="ramiller"]That's a tough one..can your oncologist recommend another surgeon specializing in this type of surgery?
I was in a similar situation..I had two oncologist reviewing my case and it was stressful when they didn't agree on a treatment plan. There may be other options..clinical trials. I took a study drug for three years and it worked...Good Luck! Keep me posted...Roxi, I will pray for you and your doctors to persevere..ask for God's guidance and special blessings! Never give up looking for a solution..[/quote]


"took a study drug for three years and it worked.."

What was the study drug you took for 3 years, if i may ask?

[ramiller]

Carcinoid Syndrome includes flushing of the skin..it sounds like you are in great shape if you haven't notice anything out of the ordinary. Congrats. Take care,

Roxi Miller

[family1317]

HI SANDRA MY NAME IS SHEA AND IM 34 AND RECENTLY DIAGONISED WITH CARCINOID SYNDROME WITH SEVERE METATSES TO THE LIVER...I CAN GIVE ONLY THE SYMPTOMS I SUFFERED FROM AND WHAT I HAVE LEARNED VISITING AND CONSULTING WITH THE TOP DR.'S IN THE WORLD FOR THIS CANCER(MD ANDERSON HOSPITAL) IN HOUSTON,TX. I HAD SEVERE DIAHERREA,FLUSHING,BAD ABDOMINAIL CRAMPING AND ALWAYS A LITTLE SLUGGISH....I FOUND OUT THAT CARCINOID CANCER AND SYNDROME ARE VERY DIEFFERENT IN ALOT OF WAYS..MY MOTHER HAS A TUMOR AS WELL BUT I SUFFER FROM THE SYNROME THAT PROGRESSES ALOT FASTER...THIS IS A VERY,VERY HARD CANCER TO FIND UNLESS YOU HAVE THE RIGHT PHYSICAINS AND A SIMPLE 5-HIAA URINE TEST...ITS THAT SIMPLE BUT IT TOOK PEOPLE TO FIND MINE 2-3 YEARS IT WAS ALWAYS SOMETHING ELSE,,,THIS IS BECAUSE TUMORS DONT SHOW UP UNLESS THEY ARE BIG ENOUGH TO BE SEEN ON A CT SCAN OR MRI...IF I CAN BE OF ANY OTHER HELP TO YOU PLEASE LET ME KNOW....GOD BLESS YOU...

[MarineMom500]

Hi Shea: I am going through the same thing (I Think) they have found one spot on the liver but the liver has been enlarging for a year now, over the past year I have had about 8 CT scans to watch the growth of my liver and now spleen. the first showed my liver to be 17cm and as time has pasted I now have a 23cm liver along with an enlarged spleen now. did or do you have the same thing going on or am I just special ( Ha Ha ) we have to keep laughing or I will start crying and not stop... you can e-mail me if you would like [moderator note: e-mail address has been removed]

[cookiegaddy]

Hi Shea...

Wow.. Our stories sound all to familiar.. I'm 39 yrs old, mother of 3, wife of almost 20 yrs.. and I too have carcinoid cancer..(gastrointestinal)..recently diagnosed Dec 16, 2008. My mother, 59, also was diagnosed with the same thing in August 2006 (she is stage IV).. because my diagnosis is so new, I'm not sure what stage I am.. I haven't even seen an oncologist yet.. I'm still recovering from a small bowel resection done on Dec 16th.. The pathology report shows that mine was in 2 feet of my bowel with metasasis to the mesenteric nodes..(3/3 Lymph nodes were involved)... the largest tumor is 6 X 3 X 3 cm... which scares me because I know the larger the tumor the more likely the chance that it has spread.. My mother has the symdrome that goes along with the later stage of this disease.. I have only experienced the flushing.... which is not bad...

Its really funny ( not in a humorous way at all) to me that here we are.. you and I, with the same cancer.. and both of out mother have it as well.. and I've asked several times on doctors visits with my mom.. if this could possibly be hereditary ... and always NO is the answer.. I've had severe abdominal pain for many years (my mom as well).. and have been told that I have everything under the sun... even til recently.. all the doctors knew that my mom had this type of cancer and not one... correlated my problems with my mothers...

I guess my question to you would be.. How long has your mom had this?.. and what is her prognosis?.. and when were you diagnosed with this?.. I know that you said that you've had symptoms for 2-3 yrs.. but when was your actual diagnosis?..Like I said.. I'm not sure where mine has spread.. my surgeon swears that he removed all of my tumors and the lymph nodes that were involved.. but, I'm still very scared... and I am still waiting to have CT scans with IV contrast of my liver and lungs done... so until then... who knows.. I'd really love to talk with you further.. If you would like .. my name is the same for my mail.... at a..o..l...( hope that you got that... lol.. )... thanks for listening to me.. and being so helpful to so many others.. you must be a very strong person.. to be going through so much and still find the time to tell other about your story.. and offer hope and information.. THANK YOU SO MUCH!!!