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

Hello @tkubista and welcome to Mayo Clinic Connect!

I am sorry to hear about your NET tumor and your upcoming surgery. As NETs are rather rare, it is hard to find others with this diagnosis which makes venues like Connect invaluable. You mention that your NET was found in the small intestine. I have had three NETs in the duodenal bulb. The first two surgeries were invasive and they included resection (with fairly large incisions and exploration into the rest of the lower digestive tract). The third surgery was done endoscopically, which was in fact an outpatient procedure. Is the surgery on the sigmoid being done because of diverticulitis? (I ask because you did not mention a NET being found there.)

Regarding the resection, as the surgery was done on the duodenal bulb, I was in the hospital for several days after surgery because I wasn't allowed to drink or eat and received IV fluids, and also had an NG (nasal gastric) tube. Since you are not sure of the exact location of the NET in the small intestine, I'm not sure if this is will be necessary for you. If you can get a copy of the PET scan you might be able to find the exact location in the small intestine. You can usually get a copy of all reports on the patient portal and if you don't have access to a patient portal, you can always request your doctor to send you copies of all reports. I would highly recommend that you have and keep copies of everything that is done, including the surgery and biopsy reports.

Has your surgeon given you any information about the length of your hospital stay or any other particulars about after-surgery plans? My GI surgeon did explain about the several-day hospital stay and the use of the NG tube so I was prepared for that.

NETs tend to be very slow-growing cancers for the most part, which is a good thing. They don't react to regular chemo nor radiation. If you do have symptoms of carcinoid syndrome at any point down the road there are monthly injections that you can have that help with these symptoms.

I am not familiar with the laparoscopic procedure nor of having two areas operated on at the same time. I will tag some others in our group to see if they have had surgeries on more than one area of the intestine.

In the meantime, here is a website that will provide you with more information about NETs which you may find helpful, https://netrf.org/for-patients/.

Here is another website that will point you to support groups (they will undoubtedly be online now because of COVID). https://www.carcinoid.org/

I look forward to hearing from you again. I hope all goes well on December 28. Will you post again and let me know if you have any other questions?

REPLY

Hello, Fellow Members of Connect's NET discussion group! @klpetts, @amyh2439 @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble @upblueeyes @ahtaylor @heidilynn4 @tomewilson @amandafl @sbcook70 @terryabk @andre1221.

We have a new member, @tkubista, who is having NET surgery in the intestinal tract later this month (her post is at the top of this page). She is particularly interested if anyone has had laparoscopic surgery for NETs or surgery with resection. If anyone can help answer any of her questions or concerns, I know she would appreciate it.

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@tkubista,
Here is a link to a NETs overview by one of the NET specialists at Mayo Clinic in Rochester, you might the information helpful.

REPLY
@hopeful33250

Hello @tkubista and welcome to Mayo Clinic Connect!

I am sorry to hear about your NET tumor and your upcoming surgery. As NETs are rather rare, it is hard to find others with this diagnosis which makes venues like Connect invaluable. You mention that your NET was found in the small intestine. I have had three NETs in the duodenal bulb. The first two surgeries were invasive and they included resection (with fairly large incisions and exploration into the rest of the lower digestive tract). The third surgery was done endoscopically, which was in fact an outpatient procedure. Is the surgery on the sigmoid being done because of diverticulitis? (I ask because you did not mention a NET being found there.)

Regarding the resection, as the surgery was done on the duodenal bulb, I was in the hospital for several days after surgery because I wasn't allowed to drink or eat and received IV fluids, and also had an NG (nasal gastric) tube. Since you are not sure of the exact location of the NET in the small intestine, I'm not sure if this is will be necessary for you. If you can get a copy of the PET scan you might be able to find the exact location in the small intestine. You can usually get a copy of all reports on the patient portal and if you don't have access to a patient portal, you can always request your doctor to send you copies of all reports. I would highly recommend that you have and keep copies of everything that is done, including the surgery and biopsy reports.

Has your surgeon given you any information about the length of your hospital stay or any other particulars about after-surgery plans? My GI surgeon did explain about the several-day hospital stay and the use of the NG tube so I was prepared for that.

NETs tend to be very slow-growing cancers for the most part, which is a good thing. They don't react to regular chemo nor radiation. If you do have symptoms of carcinoid syndrome at any point down the road there are monthly injections that you can have that help with these symptoms.

I am not familiar with the laparoscopic procedure nor of having two areas operated on at the same time. I will tag some others in our group to see if they have had surgeries on more than one area of the intestine.

In the meantime, here is a website that will provide you with more information about NETs which you may find helpful, https://netrf.org/for-patients/.

Here is another website that will point you to support groups (they will undoubtedly be online now because of COVID). https://www.carcinoid.org/

I look forward to hearing from you again. I hope all goes well on December 28. Will you post again and let me know if you have any other questions?

Jump to this post

Teresa,

Thank you for the response and links. My surgeon (at Mayo) told me to expect a 3-7 day hospital stay. There was no mention of an NG tube.

Thank you,

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@tkubista

Teresa,

Thank you for the response and links. My surgeon (at Mayo) told me to expect a 3-7 day hospital stay. There was no mention of an NG tube.

Thank you,

Jump to this post

@tkubista That sounds good. I had an NG tube because my surgery was in the upper digestive tract. I'm guessing that yours must be lower in the GI tract.

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UPDATE:

On January 28 I had surgery. 27cm of the small intestine was removed and 15cm of the sigmoid colon was removed.

Pathology indicates that the cancers have been removed.

I left the hospital 64 hours after surgery with Tylenol as the only medication.

I am eating fine and there are no issues.

Frankly, the recovery has been much easier than I anticipated.

This week we meet with the Oncologist to determine the next course of action. I anticipate, and hope, that we will enter a watch phase and be able to skip chemo / radiation.

REPLY

Hello @tkubista,

I so appreciate hearing from you with a post-surgery update! I'm glad that everything went so well and that you have adjusted to the new you!

After you meet with the oncologist, would you please post again? I would like to hear what follow-up, if any, is needed.

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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.

REPLY
@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

@tkubista, congrats on embracing life and living cancer free. When are your next scans? What does normal look like for you these days?

REPLY
@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,

I would like to join @colleenyoung in congratulating you on your good follow-up appointment. I'm also so pleased to hear that your stay at Mayo was such a good experience for you!

When will you have your next follow-up scan?

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@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?

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