Carcinoid Cancer and working

Posted by audra @ajnaudra, Feb 13, 2018

Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had an immediate CT scan which showed a large mass in my small intestine. Two weeks later over a foot of bowel, part of the colon, and left ovary removed along with lymph nodes and tissue. Three months later I needed a colonoscopy then three months after that a full hysterectomy. CT scans and MRI’s prove I still have tumors in tissue and tiny “spots” in my liver too small to grade as tumors at this time. I am on Sandostatin every 28 days and seem to tolerate it well. My booty hurts for about 2 weeks but is tolerable. I am usually tired for a couple of days and do suffer from extreme diarrhea on and off. I live on the tip of the thumb in Michigan and don’t know anyone to speak with regarding this cancer. I applied for SS benefits and was turned down, not eligible, not old enough, not enough work credit, blah blah blah. The only other thing I can think of is to go back to work to help with our finacial situation before we have to file bankruptcy (which I do not want to do). I also suffer from Fibromyalgia and have not worked outside the home for about 7 years. Any insite would be appreciated!

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.

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@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

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@mgreene

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.

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

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@mollie59

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

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

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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.

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@mgreene

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.

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@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

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@mgreene

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.

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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.

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@mgreene

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.

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

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@mgreene

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.

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So sorry. There is a typo in my Sunday reply. It should have read the rectal carcinoid returned in 10 years, not 20. I cannot figure out to correct my comment.

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@mgreene

No problem regarding the error in the date – I understood what you were trying to express.

Carcinoids often referred to as NET represent a slow growing malignancy. Many of our members have been told (at one time or another) that it is not cancer. Unfortunately, that is not the case. The slow growing nature of it gives us a much longer life expectancy as a general rule, however, often the lack of symptoms keep us from discovering it until it has metastasized. Many of our Members were not diagnosed until liver mets showed up.

Yes, I am never "lulled" into the "don't worry about it" message. Twice I had two good GI doctors tell me that after 10 years since my last carcinoid, I should not have to look for another. Well 11 years after my last surgery a new one surfaced. It is best to stay with doctors who are experts in this type of cancer. Have you mentioned to your doctor about the "diarrhea and heavy, unexplained sweating"? If not, it would be a good idea. How often do you have these episodes? Do you have annual blood work for Serotonin levels and the 24 hour urine test? I have these done annually.

I am so pleased that you travel to see a specialist. That is really important. Our carcinoid situations are quite similar, just in different physical locations.

I look forward to hearing from you again.

Teresa

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Seek help from a Carcinoid Specialist. It is now referred to as NETS (Neuroendocrine Cancer) Call the Carcinoid Foundation for help finding one closest to you. There are not many Specialists-but you will benefit by traveling to see one. A new drug has recently (end of January 2018)been approved. Don't delay-appointments are not fast.

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@mollie59

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

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The nurses may be giving it to you incorrectly. If you get a lump apply heat. It has to go into a muscle. Talk to your doctor about it. Plus get in a system – even months right cheek—odd months left cheek. Every other time it should vary where – which cheek you get the shot. My husband has been getting it for a year and half and only twice did he have a problem. One time it was up too high and he suffered, the doctor said if not given correctly it doesn't do any good. So you see how important this is.

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