1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

mcbyron | @mcbyron | Apr 17 5:51pm
In reply to @monkey5333 "I’m itching all over and wonder if it’s from the tumour" + (show)
@monkey5333

I’m itching all over and wonder if it’s from the tumour

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Did you ever find out why? Interestingly, I was really itchy about a yr ago as well. I think it was due to my low iron levels from the appediceal tumor (that had grown into my colon).

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mcbyron | @mcbyron | Apr 17 5:48pm
In reply to @ptk1776 "Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in..." + (show)
@ptk1776

Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in 2020, via appendectomy followed by right hemicolectomy (the appendectomy surgeon said he was cutting through tumor in the appendix removal). Ultimately classified as stage 3, with spread to nearby colon and one lymph node. Lots of history, but the main thing that might help others is the lesson to tell all your doctors all your symptoms. I was having my ferritin levels monitored by my sleep doctor for treatment of restless legs syndrome, and mentioned to my gastroenterologist that my ferritin had dropped below the normal range, so she started looking for a GI tumor, and did not stop until she found one (upper endoscopy, pill-cam through small intestine, colonoscopy, CT scan). That was very lucky for me, since appendix tumors not found in appendectomies are typically not found before stage 4. The other lesson I learned, was to bring comfortable walking shoes to any hospitalization that requires lots of walking for recovery. Those hard floors make stockinged feet very sore! Final lesson: do not gloat over your siblings that you have lived 40 years longer without an appendectomy than they did. As for symptoms, I have not been given radiation or chemotherapy, so all my current symptoms relate to my hemicolectomy and the loss of my ileum. I had a bad set of blood clots 17 days after my hemicolectomy in my superior mesenteric vein, portal vein, and left portal vein that shut down my colon and liver, putting me back in the hospital for twice as long as the hemicolectomy. The left lobe of my liver atrophied, but after 1.5 years of Eliquis, the clots resolved and full liver function was restored.

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Hi! You have an amazing Dr. would you be able to share the name? I was diagnosed with a 6cm appendix carcinoid tumor. Slow growing. First Dr. recommended right hemi also but second Dr. said that's old school and since my margins were good on my tumor that even with it being so large I shouldn't do right hemi. My dotatate scan was clear. However, I'm having worse symptoms than ever..especially bloating and severe pain on occasions when my intestines move. I've had this pain for about 20 years off and on and in different locations. It got better for about 10 years when I went off gluten (no more pain EVER), until now. I feel there's something we're missing but so far Drs don't seem worried. I'm 42 and possibly some of this is due to perimenopause. Interestingly I got my period 2 weeks early, immediately following my appendectomy. Since then, I've been bleeding sporadically, period comes every 3 weeks, etc.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 4, 2023
In reply to @emma19 "Hello all" + (show)
@emma19

Hello all

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Hi @emma19, how are you? I look forward to learning more about you and your neuroendocrine tumor journey.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 25, 2023
In reply to @iverwig "I actually finished my chemo and radiation treatments and I had surgery to remove the rest..." + (show)
@iverwig

I actually finished my chemo and radiation treatments and I had surgery to remove the rest of the mass that was in me. The surgeons had to plicate my right diaghram due to the cancer destroying it. I had part of right lung removed, reconstruction of my vena cava and open heart surgery. I also have a sternum lock in my chest due to the damage the radiation did to my rib cage.

In regards to the scans, I have scans done every 3 months. They were going to just continue to give me chemo but after discussing my case at a tumor board they decided to just go with the CT scans. I had a scan done last week and there was no signs of cancer however, they discovered some other issues which would explain some other complications I have been experiencing. One of the stents they put in me is blocked. I had been experiencing pain on my right side they couldn’t explain until my scan showed that one of the sternum lock staples apparently fell and is sitting in my side. They also saw that my right lung is not opening fully. I have an appointment with the thoracic surgeon in a couple weeks to discuss what was found on the scans and although it hasn’t been mentioned I suspect they will need to perform surgery again.

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@iverwig
That is good that they found the source of the discomfort you were having. I hope that they are able to resolve the problem with a simple procedure.

I look forward to hearing from you again with any questions or concerns.

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iverwig | @iverwig | Aug 24, 2023
In reply to @hopeful33250 "I so appreciate you sharing your story, @iverwig. It is helpful to others to know that..." + (show)
@hopeful33250

I so appreciate you sharing your story, @iverwig. It is helpful to others to know that often this type of cancer does not have the same look and feel as other cancers do.

How much longer will you be having the chemo? Will you be having follow up tests or scans in the near future?

Jump to this post

I actually finished my chemo and radiation treatments and I had surgery to remove the rest of the mass that was in me. The surgeons had to plicate my right diaghram due to the cancer destroying it. I had part of right lung removed, reconstruction of my vena cava and open heart surgery. I also have a sternum lock in my chest due to the damage the radiation did to my rib cage.

In regards to the scans, I have scans done every 3 months. They were going to just continue to give me chemo but after discussing my case at a tumor board they decided to just go with the CT scans. I had a scan done last week and there was no signs of cancer however, they discovered some other issues which would explain some other complications I have been experiencing. One of the stents they put in me is blocked. I had been experiencing pain on my right side they couldn’t explain until my scan showed that one of the sternum lock staples apparently fell and is sitting in my side. They also saw that my right lung is not opening fully. I have an appointment with the thoracic surgeon in a couple weeks to discuss what was found on the scans and although it hasn’t been mentioned I suspect they will need to perform surgery again.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 24, 2023
In reply to @iverwig "Hello @hopeful33250 I have no problem in sharing my experiences at all. I was initially experiencing..." + (show)
@iverwig

Hello @hopeful33250 I have no problem in sharing my experiences at all.

I was initially experiencing pain in my midsection, like a squeezing type pain. I can’t remember how long I was experiencing the pain prior to me going to the doctor but I would say at least a couple of months but it was probably longer. The pain would come and go and me being stubborn never mentioned anything to anyone to include my wife who happens to be a medical provider. To be honest I initially thought it was just indigestion and I had been healthy my entire life so I kept it to myself. I should have known it wasn’t indigestion because of the severity of the pain I was feeling. I would feel the pain on consecutive days and then I would go a few days without feeling anything. That was the only symptom I remember experiencing.

The week I was scheduled to go in for my annual physical I finally mentioned it to my wife and she told me to mention it to my PCP which I did. I was scheduled for X-rays and that is how they saw the mass.

In reference to the type of chemo I did a 3 day cycle every 3 weeks of Cisplatin and Etoposide. They gave me the Cisplatin on the first day and Etoposide all 3 days. I also had radiation the same time as the chemo. Due to the location of the mass they treated it like they would lung cancer.

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I so appreciate you sharing your story, @iverwig. It is helpful to others to know that often this type of cancer does not have the same look and feel as other cancers do.

How much longer will you be having the chemo? Will you be having follow up tests or scans in the near future?

REPLY
1 reply
iverwig | @iverwig | Aug 22, 2023

Hello @hopeful33250 I have no problem in sharing my experiences at all.

I was initially experiencing pain in my midsection, like a squeezing type pain. I can’t remember how long I was experiencing the pain prior to me going to the doctor but I would say at least a couple of months but it was probably longer. The pain would come and go and me being stubborn never mentioned anything to anyone to include my wife who happens to be a medical provider. To be honest I initially thought it was just indigestion and I had been healthy my entire life so I kept it to myself. I should have known it wasn’t indigestion because of the severity of the pain I was feeling. I would feel the pain on consecutive days and then I would go a few days without feeling anything. That was the only symptom I remember experiencing.

The week I was scheduled to go in for my annual physical I finally mentioned it to my wife and she told me to mention it to my PCP which I did. I was scheduled for X-rays and that is how they saw the mass.

In reference to the type of chemo I did a 3 day cycle every 3 weeks of Cisplatin and Etoposide. They gave me the Cisplatin on the first day and Etoposide all 3 days. I also had radiation the same time as the chemo. Due to the location of the mass they treated it like they would lung cancer.

REPLY
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