Carcinoid Cancer and working

Mary,
Thank you so much for reaching out and providing this info. I just emailed Dave today and hope to touch base with him as well. I have read tons of info via online sites. I feel most of it is outdated as it does seem people afflicted with this disease are living longer lives. Wonderful to hear! Please feel free to reach out any time and chat with me. I just looked up Xermelo and they even have carcinoid friendly recipes! Yaaaay!

Hi Mollie,
I asked my Dr yesterday and she wrote a script maybe an hour after she received the request. I will use it today before the injection and let you know how it works out!

My name is Mariana. I live in Dallas and was discovered during my first colonoscopy to have a rectal carcinoid in 2000 and a recurrence in 2010. I do not have carcinoid syndrome but I did want to encourage you to reapply for SSI disability. Friends who do receive it have told me you always are denied the first time and maybe subsequent times. Unless you can find a low-cost advocate atty you will have to do the paperwork yourself. You just keep writing letters and re-applying. Don’t take no for an answer. I know your feelings of isolation and fear of the unknown. A support group like this is very helpful. Thank you to the mentors and people who replied to Audra.

@mgreene Hello Mariana,

I see this is your first post, welcome to our community of NET survivors! I am so happy that you posted to @ajnaudra. I am Teresa and I am a volunteer mentor with Connect and have also had 3 carcinoid tumors in the duodenal bulb.

I agree, that you do have to be persistent in order to get benefits for SSI disability and sometimes you need to have some legal support as well.

I'm also glad that you shared something about your own history with carcinoids. If you are comfortable sharing more, I would be interested in knowing if you had symptoms prior to the discovery of the first carcinoid in 2000 or if just showed up when you had a routine colonoscopy? My three carcinoid tumors gave me no symptoms, they were just discovered in a routine Upper Endoscopy. I feel fortunate that they were discovered early and while they were small.

Since you do not have any carcinoid syndrome symptoms you are probably not taking any follow up treatment (monthly injections)?

Once again, welcome to Connect, I look forward to your sharing your story and your encouraging words.

Teresa

Thanks Mariana,
Nice to meet you. Would be interested in hearing more!

Mollie,
The cram worked like a charm. I can’t thank you enough for the suggestion! Hugs

Hear more? Rectal carcinoid is different from the others. So I do not have any helpful information. It was found before it metastasized. My problem was finding a doc who knew anything about the cancer. In 2005 there were only three: in NYC, LA and NOLA. I had a feeling my Dallas docs were wrong about their prognosis and treatment, and they were. So wrong. Luckily, I found a dpecialist in Metairie, La (now in Kentucky) who saved my life. Rectal carcinoid, if it returns, comes back in exactly the same spot. In year 20, it sure did. I have a colonoscopy or flex sig every year.

@mgreene

I am glad that you posted more about your experience with rectal carcinoid. I believe that you are the first person to post about this type of carcinoid. Yes, it was a problem to find specialists who knew something about carcinoids years ago. My first tumor was discovered in 2003 and I saw a regular surgical oncologist who was very good, but he was not a carcinoid specialist. We are quite fortunate to have more specialists now and more information. I understand that there is an increase in the number of diagnoses of carcinoid, so it might be removed from the "rare disease" category. If this happens it will perhaps open up more research for all of us Zebras!

If you haven't viewed this video yet, you might find the information enlightening. Several specialists from Mayo spoke about NET treatment, Dr. Thor Halfdarnarson, a medical oncologist from Mayo Rochester, discusses the team approach at Mayo and best practices for the diagnosis, management and treatment of neuroendocrine tumors. Thor is accompanied by physician assistant Rachel Eiring, a member of the neuroendocrine cancer team at Mayo Rochester. https://youtu.be/B_PEkYN9Yz4

I am glad to hear that you are getting regular follow ups. I look forward to you continuing to post here. At Connect we all learn from each other!

Teresa

I was told after the fortunate discovery of the rectal carcinoid by my gastroenterologist in 2000 that a carcinoid was “cancer-like” but not really cancer and I should think nothing more about it. She said the biopsy margins had come back clear. My internist sent me to to a well-regarded oncologist and I sought a consultation with an oncologist at University of Texas Southwestern Medical School. All of them told me my cancer crisis was over and to relax. I have never had any symptoms of carcinoid syndrome, although every episode of diarrhea and heavy, unexplained sweating frightens me.

I was never able to “relax” and “forget about it,” but it took five years to find Dr. Lowell B Anthony in Louisiana. He agreed to see me, but my appointment date turned out to be when Katrina hit New Orleans. He had to relocate to Baton Rouge. When I finally met with him, he told me rectal carcinoid tends to return to original site and that I needed to have annual flex sig for four years and colonoscopy every five years. He said if the carcinoid did not return after 10 years I could probably back off annual scanning. In year 10, the same gastro who discovered the first tiny tumor in 2000 saw another tag of tissue in the same area as original tumor. This time I had surgery by a colon cancer surgeon with a strong reputation for successful abdominal and gut surgeries. I have had 7 years of my second set of annual scans. Pre-cancerous polyps have been discovered but no carcinoids, so far. Even if I am thought to be cancer-free in 2020, when I will be 69, I will not be able to “relax” and “forget about it,” I plan to continue the annual scans. Maybe after 20 years I will let it go.

Thank you, Teresa, for the video referral. I will watch it.