1. < Neuroendocrine Tumors (NETs)

Small bowel NET and colon cancer

Posted by tkubista @tkubista, Dec 6, 2020

I am 51 and had my first colonoscopy. One polyp with cancer was discovered and removed. The standard practice it to conduct a CT scan of the chest and abdomen to see if the cancer has metastasized. A Neuroendocrine tumor was found in the small bowel. This was confirmed with a PET scan.

While this sucks, if the cancer was not found in the colon, we would not know about the NET. I have no symptoms.

I am having surgery on Dec 28. There will be a resection of the sigmoid colon and the small bowel (I am not sure of the exact area.)

The plan is to do the colon laparoscopically and then proceed to the small bowel. The surgeon thought she might need to make an incision to complete the small bowel resection.

My questions:

1. Has anyone experienced a resection of both intestines? Could you share your experience?

2. To anyone that has experience with resections:

a. What advise do you have preparing for surgery?

b. What is recovery like? What advise do you have?

c. What pitfalls should I avoid?

I appreciate any input.

Thank you

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 1, 2021
In reply to @tkubista "UPDATE On January 6 we met with the oncologist. They feel that it is likely that..." + (show)
@tkubista

UPDATE

On January 6 we met with the oncologist.

They feel that it is likely that I am cancer free. However, the only way to know for sure is to wait and have a few CT scans in the future. He told me to live my life and to be hopeful.

The surgery recovery is going well. I left the hospital on Tylenol only. I am not longer taking Tylenol. I am eating all I want and everything is working well. I am, however, struggling with fatigue. I get tired easy. This is improving daily.

Bottom line:
- I was shocked at 51 to learn that I had cancer in two spots. So far I have lived with no medical issues whatsoever.
- I feel fortunate to have been treated at Mayo clinic. The care has been so superb that I will seek to have all future medical care at Mayo.
- Today, just a few months later, I am cancer free and close to resuming my normal life.

I am blessed.

Jump to this post

Hello @tkubista
As it has been a couple of months since your surgery at Mayo, I was thinking about you and wondering how you are feeling. Is your fatigue lessening now? Are you still able to eat comfortably?

REPLY
bellsina71 | @bellsina71 | Mar 18 5:37pm

I had colon cancer when I was 38 and they did a complete procto collectomy. The removal of everything down there. All I have is a small intestine and I just found out after having a mass removed in my duodenum last year that I have multiple lesions in my small intestine now. I don't even know what they do for this. I'm kind of scared.
I did have a resection of my small intestine last year with the tumor that I had removed. It went fine although it was right on top of my pancreas duct.. They took 17 lymph nodes and all were clear for cancer, although the tumor was pretty large.
When I had an EDG done as a follow-up now this year there was a lesion right where the cancer had been removed. It's not the same cancer because I get these tests done every 3 months that tell if the cancer is coming back, so this is completely different. It's high grade displaxia.
A lesion with high grade dysplasia but I had the pill camera and have multiple lesions. I'm not even sure what that means. I'm not sure what they're going to do. I am so scared!
You're going to do fine though with the resection. You might be in some pain. It's just a matter of getting around and walking around.
I wish you all the best!

REPLY
1 reply
Turkey | @tomrennie | Mar 19 2:41pm
In reply to @bellsina71 "I had colon cancer when I was 38 and they did a complete procto collectomy. The..." + (show)
@bellsina71

I had colon cancer when I was 38 and they did a complete procto collectomy. The removal of everything down there. All I have is a small intestine and I just found out after having a mass removed in my duodenum last year that I have multiple lesions in my small intestine now. I don't even know what they do for this. I'm kind of scared.
I did have a resection of my small intestine last year with the tumor that I had removed. It went fine although it was right on top of my pancreas duct.. They took 17 lymph nodes and all were clear for cancer, although the tumor was pretty large.
When I had an EDG done as a follow-up now this year there was a lesion right where the cancer had been removed. It's not the same cancer because I get these tests done every 3 months that tell if the cancer is coming back, so this is completely different. It's high grade displaxia.
A lesion with high grade dysplasia but I had the pill camera and have multiple lesions. I'm not even sure what that means. I'm not sure what they're going to do. I am so scared!
You're going to do fine though with the resection. You might be in some pain. It's just a matter of getting around and walking around.
I wish you all the best!

Jump to this post

Take a deep breath if you can. You have a lot to process. Is there a game plan yet for your treatment? Like maybe the next step? I have learned that I can only process things one at a time.

REPLY
View MoreView Less
Please sign in or register to post a reply.