Cancer Survivors Network

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 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

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.

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.

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

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?

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 -

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

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

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

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

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.

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.

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.

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

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.

Maureen,

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

Steve

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.

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

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

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)

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)

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 $$.

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.

Have you had any CT or pet scans?

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.

K,

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

Steve

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!!

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.

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.

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!

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.

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.

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??

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