Caricinoid Tumor

nittany14 said:

I am so pleased about your recovery.
My father was diagnosed in his late 60s and he was sick with a carcinoid blockage in his small intestine for over a year before the doctors did anything. Bravo to you for getting to the doctor and getting this diagnosed.

Praise God for your early detection and recovery! Would you mind sharing how they found the tumor? Do you know what your 5HIAA levels were? I would really appreciate it. Also, if you want, I have been researching neuroendocrine cancers (being recently diagnosed although not yet subcategorized) and may have some info/links for you. Brenda B.

I am 39 years old and 2yrs ago I was diagnosed with Neuroendocrine Carcinoma with mets to the the liver (Carcinoid Tumor). My doctors believed that the primary site was in my small intestine so in 7/01 I had part of my small intestine removed and 5 lymph nodes removed, and radio-frequency ablation to the tumors on the surface of my liver. I have had chemo put directly into my liver, however that only is a temporary(3mths) treatment. I have been on experimental drugs in the last year. My tumors in my liver are currently stable. In November when I had my last CT scan I was informed that the cancer process has gotten worse throughout my body (all my symptoms have returned--i.e. diarrhea, flushing, pain, fatigue) and my 24hour urine for 5HIAA is increased and my serum sertonin levels are high. My left ovary is now full of cancer and I will go to the doctor again on 1/7/03 and find out about what is to be done about that. I want it OUT! I was told when I was diagnosed that this cancer is seen in patients in their 60's and 70's and that it is rare to see it in someone so young,also the doctors felt that I had this cancer already for least 4yrs. I am trying to look to into a support group in my area. I have had one-on-one counseling, but I still have so many emotions and feelings to deal with. I am married and have a great group of friends and family, however only a fellow cancer patient can truly understand what I am feeling and going through. I am currently working full-time (should I say trying to work). I try to keep working only because of the health insurance. I thought for long time that there was no one else out there that was under the age of 40 that had been diagnosed with this cancer. Thank you for your message and I hope everything continues to go well for you. Robin

robinmc said:

I am 39 years old and 2yrs ago I was diagnosed with Neuroendocrine Carcinoma with mets to the the liver (Carcinoid Tumor). My doctors believed that the primary site was in my small intestine so in 7/01 I had part of my small intestine removed and 5 lymph nodes removed, and radio-frequency ablation to the tumors on the surface of my liver. I have had chemo put directly into my liver, however that only is a temporary(3mths) treatment. I have been on experimental drugs in the last year. My tumors in my liver are currently stable. In November when I had my last CT scan I was informed that the cancer process has gotten worse throughout my body (all my symptoms have returned--i.e. diarrhea, flushing, pain, fatigue) and my 24hour urine for 5HIAA is increased and my serum sertonin levels are high. My left ovary is now full of cancer and I will go to the doctor again on 1/7/03 and find out about what is to be done about that. I want it OUT! I was told when I was diagnosed that this cancer is seen in patients in their 60's and 70's and that it is rare to see it in someone so young,also the doctors felt that I had this cancer already for least 4yrs. I am trying to look to into a support group in my area. I have had one-on-one counseling, but I still have so many emotions and feelings to deal with. I am married and have a great group of friends and family, however only a fellow cancer patient can truly understand what I am feeling and going through. I am currently working full-time (should I say trying to work). I try to keep working only because of the health insurance. I thought for long time that there was no one else out there that was under the age of 40 that had been diagnosed with this cancer. Thank you for your message and I hope everything continues to go well for you. Robin

Robin & Lisa- I just saw this posting today. I haven't been here much lately, but I too was diagnosed w/ neuroendocrine carc, in the cervix. I am 29. 11/06/02 I had surgery to remove my cervix, uterus, tubes, ovaries, and lymph nodes. I had 25 XRT and am currently receiving IRT. Thankfully, my nodes & bone marrow have both tested negative for involvement. At this point I'm keeping my fingers crossed. Please feel free to contact me- would love to be able to talk w/ someone who can relate not only to cancer, but this particular type.
Good Luck!
Chris

lisa72 said:

Hi Robin- I am sorry to hear that you too had to get this cancer at a young age. My doctors told me the same thing. This is something people get in their 60's not 20's or 30's. I don't know where you live but there are support groups based out of NY, AZ, Washington DC, PA, TX,NJ and Canada. I have not been a part of these groups because I live in Boston, but I do subscribe to their news letter. The have a lot of infomational events and report on updates in treatments. The NY chapter just recently established a website at www.carcinoid.us or you can email them for info at noidfighter@aol.com.

I am curious as to if you need to have B-12 shots because of the section of the intestine they removed?? (I had to start with monthly shots in 12/02). Please feel free to contact me if you want at mpaiva@attbi.com. I hope everything works out for you!! I will keep you in my thoughts and prayers.

Lisa

Lisa and Chris-- Thank you for replying to my message. Since I last was here on this web site I have had alot of changes in my status. I am now at stage 4 in my cancer. I have recently started receiving a 2 drug chemo regimen, which I am doing okay with it. I haven't lost my hair yet and I have been through two rounds of it. I really appreciate the information that you gave me and I also will keep you in my prayers and thoughts. I guess that we (the cancer patients and survivors all have a special bond with each other). Thank you for giving me your e-mail address Lisa and don't be surprised if you hear from me. My e-mail address is Robeanoo20@aol.com Thanks again, Robin

robinmc said:

I am 39 years old and 2yrs ago I was diagnosed with Neuroendocrine Carcinoma with mets to the the liver (Carcinoid Tumor). My doctors believed that the primary site was in my small intestine so in 7/01 I had part of my small intestine removed and 5 lymph nodes removed, and radio-frequency ablation to the tumors on the surface of my liver. I have had chemo put directly into my liver, however that only is a temporary(3mths) treatment. I have been on experimental drugs in the last year. My tumors in my liver are currently stable. In November when I had my last CT scan I was informed that the cancer process has gotten worse throughout my body (all my symptoms have returned--i.e. diarrhea, flushing, pain, fatigue) and my 24hour urine for 5HIAA is increased and my serum sertonin levels are high. My left ovary is now full of cancer and I will go to the doctor again on 1/7/03 and find out about what is to be done about that. I want it OUT! I was told when I was diagnosed that this cancer is seen in patients in their 60's and 70's and that it is rare to see it in someone so young,also the doctors felt that I had this cancer already for least 4yrs. I am trying to look to into a support group in my area. I have had one-on-one counseling, but I still have so many emotions and feelings to deal with. I am married and have a great group of friends and family, however only a fellow cancer patient can truly understand what I am feeling and going through. I am currently working full-time (should I say trying to work). I try to keep working only because of the health insurance. I thought for long time that there was no one else out there that was under the age of 40 that had been diagnosed with this cancer. Thank you for your message and I hope everything continues to go well for you. Robin

Thanks for sharing your story!
My 21 yr old nephew has had 2 carcinoid surgeries in the past 4 months at Mayo, to remove large parts of his sm. intestine & part of his liver. His cancer has distant spread & is still in the liver. He is looking into a clinical trial in the Netherlands. Please contact Nancy Steele (his mother) at Nancy_Steele@ntrs.com She would love to hear from someone fighting this same type of cancer.
Thanks! Jody Herman, sister(American Cancer Society)

bbannon919 said:

Praise God for your early detection and recovery! Would you mind sharing how they found the tumor? Do you know what your 5HIAA levels were? I would really appreciate it. Also, if you want, I have been researching neuroendocrine cancers (being recently diagnosed although not yet subcategorized) and may have some info/links for you. Brenda B.

i'm a 56 year old male with carcinoid tumors of the small intestine. i had surgery 3 years ago. i am constantly monitored. every 3 to 4 months. six months ago my 5HIAA levels made a dramatic jump. after slowly rising for 2 1/2 years to a level of 12, an abrupt jump to 24 shocked me. my dr. stated that he had patients with levels as high as 28. wasn't much consolation to me. he just stated that DIRECTION, not the actual level was most important. i too have had little success in finding information concerning 5HIAA levels. al o.

My 63 year old aunt just had surgery to remove a carcinoid tumor. They told us it was rare but haven't told us anything else. The symptoms that are listed for it are things shes had problems with since her 20's. When I read that I really got scared. She was just told today that it's in her lymph nodes and that it's in the third stage. Do you know what that means? She really had a hard time with the surgery. The third day after her sugery she stoped allowing visitors. We're getting such limited info from her and her immediate family. I'm not sure if they are telling the truth that they don't know anymore yet or if my aunt won't let them tell anyone or if she's telling them. She's always been a real proud women and don't like people worrying over her. So instead of being able to tell you info, I'm asking for it! If you know anything about the stages and what this means I'd really appreciate hearing from you...................

bbannon919 said:

Praise God for your early detection and recovery! Would you mind sharing how they found the tumor? Do you know what your 5HIAA levels were? I would really appreciate it. Also, if you want, I have been researching neuroendocrine cancers (being recently diagnosed although not yet subcategorized) and may have some info/links for you. Brenda B.

Hi, Brenda. I have had a kidney removed for Transitional Cell Carcinoma (March 2004) and a lung lobe removed for Adenomacarcinoma (January 2005). Checking the nodes in January they found two with Spiral Cell Carcinoid. These were located at the Y where the breathing tubes go to the lungs. I have had an Octreotide Scan done and that is clear. Being told that they would follow me on this is not too encouraging...it is already in the lymph nodes....can you put me in touch with the sites on carcinoids and anything else you may have on this. I go to see the Oncologist next week and will let him know my concerns....the kidney and lung surgeries were successful and no follow-up is needed except to do the periodic checks. Thanks for anything you can tell me.
Lotte

lmcp said:

Surges
Hello. I am 62 years old, and was diagnosed with carcinoid tumors and carcinoid syndrome in January of this year. What actually sent me to the doctor weren't the "surges" or other symptoms of the Syndrome, but I could actually feel and "see" the enlargement of my liver when stepping out of the shower in the mornings. (by this time my weight incredibly low!)
Lots of tests later, it was determined that I had tumors in my small intestine and colon, and that they had metastisized to my liver.....the ones on the liver are too large for them to attempt surgery. I've been on Sandostatin shots, once every 4 weeks, since January. My weight as gone from 112 to 139! I can eat normally now - and don't have diarrhea constantly. And the flushing has calmed down dramatically - although not totally gone away. Last CAT scan showed that my tumors had "stabilized".
I was very fortunate to have been referred to the right oncologist. Important note - I read on one of the first websites that I checked out after the diagnosis but before meeting my doctor - they said "make sure your doctor knows how to spell carcinoid!" Implying that this is a rare form of cancer - and getting the right care hinges upon hooking up with the right oncologist! Find that person. Take good care -

imcp
Congrats on being stabilized. With my wife we are goin down the other road, with mets to the liver, oviaries, limph nodes, and bone. where is your onc. at if you don't mind my asking?

Steve