CSN Login
Members Online: 12

Caricinoid Tumor

lisa72
Posts: 5
Joined: Mar 2002

I am a 29 year old female who was diagnosed with a caricnoid tumor in my small intestine. I underwent surgery in 5/01 to remove a portion of my intestine and 9 lymph nodes. Thankfully, it had only spread to one lymph node and the margins were all clear. Because of this early detection I did not have to undergo any other treatment and may only require monthly vitamin B12 shots in my future (a very small price to pay for my health/life) I have since made a full recovery. I will be monitored and tested regularly for the rest of my life. The doctors told me this is an extremely rare tumor and is usually found in older people and is ususally only detected after it has spread. They also told me that another tumor could appear at anytime, but are not sure on the percentage of reoccurrance. I have found some limited information on this type of cancer, but I am looking for more information and to possibly talk with someone who has had this diagnosis.

nittany14
Posts: 2
Joined: Apr 2002

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.

bbannon919
Posts: 2
Joined: Apr 2002

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.

lisa72
Posts: 5
Joined: Mar 2002

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

beerkeep
Posts: 1
Joined: Apr 2003

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.

MFPSJP
Posts: 1
Joined: Mar 2004

Hello - I am new to this site and am requesting information and help. My 61 year old friend was just diagnosed with carcinoid tumors of the small intestine, had surgery, and just yesterday met with the "tumor board" of a large RI hospital. The doctors are not offering much treatment. They did suggest that she may want to look into some trial programs. I am attempting to find trial programs for this cancer and to contact them if possible. Does anyone here have any information that they may share with me? My e-mail at home is MFPSJP@AOL.COM and I would appreciate any help that may be available. Apparently her cancer is quite advanced and time is of the essence. Again, thank you.

AuthorUnknown
Posts: 1564
Joined: May 2006

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

tjnelson
Posts: 3
Joined: Oct 2009

My mother is 63 yrs. old. They are suspecting a carcinoid for approx. 2 years but still have not found it even with an octreotide scan. How did they eventually find your fathers? Did he have "attacks"....my mom has "surges" that they feel are hormonal, that cause her blood pressure to skyrocket and her pulse goes wild, thus becoming very painful. She's getting them more frequently and sporatic now. Any suggestions?

lmcp
Posts: 3
Joined: Oct 2009

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 -

mr steve
Posts: 286
Joined: Sep 2009

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

lmcp
Posts: 3
Joined: Oct 2009

I'm seeing Dr. Zu at the Cancer Center Oncology Medical Group in La Mesa, CA.
Phone is 619 644-3030
Address - 5555 Grossmont Center Drive, La Mesa, CA 91942
By the end of our very first consult (he had totally reviewed all my test results prior to that), he had them give me my 1st Sandostatin injection. The improvement took time, and diet issues were tricky at first, but after time the benefits became obvious.
When was your wife diagnosed?
Luanne

mr steve
Posts: 286
Joined: Sep 2009

Rhonda was dx in March of 2008. Hers is non functioning so the sando did not help with any symtoms, but now its spreading we might go back on it if the chemo dosent work. Some studies have shown that it slows the growth down. We're going to the James at OSU and the Docs and staff there have been great and realy know there stuff.
Steve

lmcp
Posts: 3
Joined: Oct 2009

From what I've read (and been told), Sandostatin initially was given to patients to help with the symptoms of Carcinoid Syndrome......and they discovered a nice little side benefit of it slowing down the growth of tumors. Hopefully that continues to be the case.
Sounds like Rhonda is going to a good place........and that's so important!
Since this whole thing began it amazes me how many wonderful and caring people are out there taking care of people like us. Truly had no idea til I became one of the "patients".
All my best to your wife in her HEALING process!! and to you, too.
Luanne

MAUREEN227
Posts: 3
Joined: Feb 2011

Hello. I am writing this because my mom has carcinoid tumors on her liver and has surgeries to "manage" them - she has had them burned off a few times now. Anyways she has started the Sandostatin shots just this last Wed. and she got very sick after the shot. The doctor did say that may happen. Did you have any reactions? Anything that helped or made it worse? Before the shot her weight started to drop (ALOT), always nausiated/vomiting, so we are hoping for some relief from that. Just wondering how it was with you, she is about your age with the same condition. Thanks for any information.

klisesr
Posts: 15
Joined: Nov 2010

Hi Maureen: I have had carcinoid cancer since 2006 (diagnosed at 37 years), but thought all was well until last year when I had several liver mets and liver resection. My doctor put me on Sandostatin LAR, and it was miserable the first few months. They're supposed to start patients on a subcutaneous injection that is given multiple times daily, but I think most docs just go straight to the monthly depot injection - which has pros and cons. I had a lot of abdominal cramping, fatigue, constant headaches, among other things. After my 4th injection, I either had adapted to my "new normal" or the side effects had subsided. Tell your mom to hang in there for a while - hopefully it will get better. Did your mom have her primary tumor removed? If she is losing weight and vomiting, I would be worried that she may have some intestinal obstruction, which is common with the primary tumors.

MAUREEN227
Posts: 3
Joined: Feb 2011

Thanks for responding - I really appreciate it. They believe that they removed the primary tumor in her small intestine; however, it's still on the liver and she has that monitored every three months. Infact she is going back to Cleveland Clinic in two weeks for her tests. Anyways - after her first Sandostatin shot she got very sick. It really worried us. It lasted a few days then slowly she got back to herself. (Somewhat) After each shot were you down for a few days? She goes again March 18th for the next one. A little nervous about how bad it will be after, but if it gets better we guess it is worth it. Your liver resection - did they do that because it was so big? Wondering if that is an option with hers (which she is going to ask about on her next visit). Are things ok with you currently? Where do you have your treatments? Hope to hear from you again - I'm sure know how hard this is on everyone - nice to hear from someone who knows what to expect firsthand.

mr steve
Posts: 286
Joined: Sep 2009

Your mom will start feeling better after a few of the sando shots it takes a while for the blood levels to build up.

MAUREEN227
Posts: 3
Joined: Feb 2011

Thanks for the reply. We are just worried and that last shot really took her down for a few days. Next one is next Tues. and hoping it will be easier. Thanks for the support.

mr steve
Posts: 286
Joined: Sep 2009

Maureen,

You will find a lot of support on this website. You can also check the caregivers board.

Steve

klisesr
Posts: 15
Joined: Nov 2010

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.

enotac
Posts: 2
Joined: Jan 2013

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.

robinmc
Posts: 2
Joined: Jan 2003

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

lisa72
Posts: 5
Joined: Mar 2002

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

robinmc
Posts: 2
Joined: Jan 2003

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

chrisaw's picture
chrisaw
Posts: 19
Joined: Nov 2002

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

jodyherman
Posts: 2
Joined: Jan 2003

Thanks for sharing your story!
My 21 yr old nephew has had 2 carcinoid surgeries in the past 4 months, to remove large parts of his sm. intestine & part of his liver. He is looking into a clinical trial in the Netherlands. Please contact Nancy Steel (his mother) in the evening at 954-389-1802 She would love to hear from someone fighting this same type of cancer.
Thanks! Jody Herman (American Cancer Society)

jodyherman
Posts: 2
Joined: Jan 2003

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)

SamnCandler
Posts: 1
Joined: Apr 2003

This is the most info I have been able to find regarding carcinoid tumors. I am a 55 year old male and was just recovering from radical prostate cancer surgey when the carcinoid tumors were found in my liver, in an effort to discover the source of my weight loss and fatigue. The two cancers are not related. The liver tumors are secondry and of the neuroendocrine cell type, conprising 60 to 70% of the liver volume. I am presently being treated using a MIBG-131I radio-isotope, chemo therapy. I will continue to follow this discussion group for any new treatments available and ways to over come the weight loss and fatigue. I am also taking a monthy 'sandostatin' to help reduce the symtoms. I to continue to work - need the insurance $$.

jolene45
Posts: 1
Joined: Mar 2008

for everyone that does not know about cfcf they are the CARE FOR CARICANOID FOUNDATION they deal strictly with caricanoid cancer there are only 4 hospitals in the USA that specialize in caricanoid cancer I have recently been lucky enough to be accepted at CEDARS SINIA MEDICAL CENTER they consider me a good test so to speak. I am a 47yr old female mother of 5. I was diagnosed in 2004 at that time they found the cancer in my liver and it was caricanoid origanally from my colon. at my second visit to my oncologists office I asked him how much time I had he answered point blank about 1 year. That hit me like a brick wall I had a 3 yr old son that had been born premature and at that time he was my whole world. 2 fo my sons where already adults I had a new born grandson and my daughters lived with there paternal grandparents and there grandfather had just died 1 week before of cancer. I am still here 5 years later 1 surgery which removed the original tumor (the size of a grapefruit) and the whole right leg of my colon, 2 chemoembolizations and 1 regular chemo last June that almost killed me. I am at the end of the line now the cancer has now spread to my lymph nods and caricanoid syndrom has begun to destroy the right valve of my heart I recieve 60mg sandostatin every 4 weeks that doesnt work like it used to. Cedars is going to do a chemoembolization, replce the valve in my heart, remove the lymph nods next to my pancreus and some in my groin then cut off the left outer edge of my liver were all 10 masses are. my regular oncologist says they are very ambitious. but does agree that the doctors that are going to be doing all of this are some of the very best in the country. I am so very very lucky. GOOD LUCK TO ALL AND GOD BLESS.

NRrunner69
Posts: 2
Joined: Mar 2003

Just found out about this site today, I have carciniod tumors through my whole intestines, I had a bowel resection, Lymph noids removed, and still have nests all throughout, they could not take mine all out because i would have to feed the rest of my life through a tube, I have shots every month to slow the process down, but actually I feel like a guinea pig since they don't know too much about these tumors, I also have the carciniod syndrome, it would be nice to talk to someone who has had this or who is going through the same thing.. I'm glad you are doing so well....Lee

nikkilee
Posts: 1
Joined: Mar 2004

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...................

Jasewizard
Posts: 1
Joined: Mar 2004

My dad was diagnosed with Carcinoid Syndrome mid 2003. It's now March of 2004, and he is nearing the end of his journey. His tumor was in the small intentine, and inoperable. He's been getting Octriotide shots every month, but it had already spread to his heart vavles, liver and lungs. They just took him off his medications yesterday, and arranged hospice to come in and administer morphine. It's been really really hard watching his suffering. His quality of life has been very bad since he was diagnosed. But even before that, he was suffering from having to go to the bathroom 8-12 times a day. He's 73 years old young, and before this, was very active.

vjpers
Posts: 1
Joined: Jun 2010

I had a carcinoid/carcinoma removed from my small bowel, along with about two feet of the bowel and ten lymph nodes. They found that it had spread into five of the lymph nodes. This was 4/29/10. Currently I have no symptoms like I did before. The diarrhea is gone, no more stomach pain, and my blood work shows nothing at this time. I go back on August 3rd for another blood test. My surgeon says they can only wait and see now and hopefully they got it all. They assure me that it is not in my liver, but say it may go there. Should I be doing anything more to ensure that it doesn't?

mr steve
Posts: 286
Joined: Sep 2009

Have you had any CT or pet scans?

klisesr
Posts: 15
Joined: Nov 2010

I was diagnosed with ileal carcinoid in 2006 and had surgery (during which I had 48 lymph nodes removed, 5 of which were positive for cancer). My surgeon was "confident" that I was cured. I never had elevated Chromagranin A or 5HIAA. Over the past year I began having increasing symptoms again, yet my blood and urine remained normal. A CT-scan revealed several liver lesions almost exactly 4 years after my initial diagnosis. Moral to the story: Keep a positive attitude, but be a realist. There is a possibility there are already liver mets that can be treated if you stay on top of your health and regular testing. I would not rely on blood and urine tests alone, however, unless you previously had elevations, as not all carcinoid patients have such indicators for disease progression. I also highly recommend finding a carcinoid specialist via carcinoid.org - despite physicians' good intentions, most are not familiar with carcinoid or the proper treatment.

mr steve
Posts: 286
Joined: Sep 2009

K,

keep the positive outlook my wife was stage 4 and we seem to be in remission for now.

Steve

walterta's picture
walterta
Posts: 31
Joined: Jan 2011

I was first diagnosed in January 2008 with having a caricinoid in my appendix which caused it to burst while they were removing it. Then 3 months later I had part of the right of my colon removed and some lymph nodes to see if it had spread. Thankfully it had not. Then in January of this year they found out I had another carcinoid this time right below my right kidney. It was the same appendix carcinoid. I had to have my whole right kidney removed and part of my small and large intestine removed. I will be starting chemo on Monday, the folfox and avastin. This is an aggressive treatment they are doing to try to make sure it is all out and to prevent another reoccurance. This is a very scary form of cancer, there is not much information on it and my doctor told me that my case is a once in a decade type of case. Not exactly what you want to hear.

rbedwards
Posts: 2
Joined: Apr 2011

HI Walterta

My Mom was diagnosed with appendicil carcinoma in March of 2010. It has been a very long year. From what her doctors are telling her, they do NOT recommend surgery for her? Seems strange that all I've been reading over the past year is that the first course of action is to remove the obstructions and the offending tumors then hit it with chemo. I feel like we're going backwards and it's becomming very frustrating to watch. Mom has gone from 5FU to Folfiri, to 5FU with Oxaliplatin, and then 5FU with Avastin. We tried a brief shot at Xeloda which totally washed her out and is now causing problems with bowel obstructions and bowel dialation. I'm at a loss. She is still in fair condition. Not suffering any of the weight loss that hit her initially, mostly due to the supplement of TPN administered at home 3-5 days a week. Someone tell me about their experience with the debulking surgery w/or without the internal "hot" chemo?? Maybe some wonder drug I have yet to research...looking for some feedback from the rest of the country. We are in the Seattle area at the Cancer Care Alliance/Fred Hutchinson Research Center. What's happening in the rest of the country?

As far as the folfox/avastin treatment, she breezed right through it with flying colors. She did have trouble with her voice changing and dry eyes. Other than those and some slight flushing it was the easiest treatment she's gone through. I wish you a speedy recovery!!

klisesr
Posts: 15
Joined: Nov 2010

Hi - I have small bowel carcinoid, and agree that surgery (given a healthy individual otherwise) is the first approach with this cancer. Chemo is generally not successful, as these tumors generally grow slower than typical cancer cells and thus are not typically affected by chemo treatments. I live in the Western US, and through my own experience have come to appreciate the importance of an expert in carcinoid to care for me. I highly recommend that you consider seeing Dr. Rodney Pommier at OHSU in Portland. He is a wonderful man (oncolytic surgeon) and truly cares for his patients. His practice is dedicated to carcinoid and breast cancer. He just did my liver surgery this past summer, and I wouldn't consider going to anyone else. I live in Montana, so Settle was a place I considered going, but I couldn't find an expert there. My prayers are with you and your mom.

rbedwards
Posts: 2
Joined: Apr 2011

Thank you for you comments and prayers. Thanks for the information as well. I was wondering about OHSU as a teaching hospital seems to be very aggressive in their approach. I will research your suggestion. Thank you again and speedy recovery to you.

SamFitz68
Posts: 6
Joined: May 2011

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!

Irishlucky1's picture
Irishlucky1
Posts: 5
Joined: Sep 2011

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.

ShirleyL
Posts: 1
Joined: Jan 2012

I was diagnosed with a Neuroendocrine Carcinoid tumor in March of 2011. I had lobectomy to remove the middle and upper lobe of my right lung the end of June. I was told that there were 2 lymph nodes involved but they did not feel there was need for concern. I then saw a second oncologist who gave me the same advise so I guess I should be comforted by that. I have had one follow up CT so far with the same 2 lymph nodes still enlarged but staying the same. The oncologists don't seem to be concerned however... Have you had any lymph node involvement and what are you doing for follow up. I am having scans every 6 months. As far as recovery. I am feeling great. The numbness in my chest, arm pit and back are gone. I have been able to bike again and I go to the gym just about every day. Most importantly I can play with my grandson. I am 52 years young and loving life. Hope you are well and would like to hear more of your story.

enotac
Posts: 2
Joined: Jan 2013

Hello,

My husband was diagnosed w/carcinoid in 2011. We are still learning about it, but a few things we do know, getting scanned every 6 months is unacceptable at this point in your illness. My husband's tumors only showed up on PET scans, and this time they went from invisible to measurable in 3 months. Also, lymph node involvement can be serious and must be monitored. Carcinoid is rarely diagnosed in its early stages for the reason that it is so often asymptomatic, so feeling fine is not an indication that you are fine. I hope that you are, but you need to talk to carcinoid specialists, and you may have to travel to do it. Dr. Woltering in New Orleans Dr. Fine in NYC, Columbia Univ Hospital at Penn are things you should check out. Go to Carcinoid Cancer Foundation to learn more. My husband is fighting for his life, but feels relatively fine since chemo was stopped in October, but his tumors are back and we're debating what to do next. Learn about the disease and get monitored more often. Good luck.

Colleengh
Posts: 1
Joined: Sep 2011

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??

klisesr
Posts: 15
Joined: Nov 2010

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

Tishfish
Posts: 3
Joined: Mar 2013

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. 

 

WendyKay
Posts: 17
Joined: Jan 2011

I would like to know if there is anyone out there that has a Carcinoid syndrome tumor, due to being near Christmas Island around 1958-1960?

I am checking on this for my father in law who would like someone to talk to that has this or who is going through this..

 

 

Thank you

WendyKay

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network