I believe the pain was mostly from the incisions made for the robotic instruments and an area like another C-section where I believed they removed the affected colon. The incision were made from the left side all the way to the right. Thats a lot of 'meat' to go thru. lol. But seriously from the left all the way to the right lots of area to cut thru and was much worst then the missing colon area. That part was sore but not as bad as I thought it would be. Didn't realize that would be done that way.
I believe the pain was mostly from the incisions made for the robotic instruments and an area like another C-section where I believed they removed the affected colon. The incision were made from the left side all the way to the right. Thats a lot of 'meat' to go thru. lol. But seriously from the left all the way to the right lots of area to cut thru and was much worst then the missing colon area. That part was sore but not as bad as I thought it would be. Didn't realize that would be done that way.
Wow, no wonder it was painful! I only have a vertical scar from belly button down to previous hysterectomy scar, but my surgery wasn’t robotic. Did you get your pathology report yet, stage & grade? Glad you’re feeling better!
No not yet.. I do know that one part of it was grade 1.. which I understand is very slow growing.. YAY.. but no stage as I believe a lymph node was involved. And no knowledge is any further treatment is needed.. HOPING PRAYING .. we are DONE.. but who knows
No not yet.. I do know that one part of it was grade 1.. which I understand is very slow growing.. YAY.. but no stage as I believe a lymph node was involved. And no knowledge is any further treatment is needed.. HOPING PRAYING .. we are DONE.. but who knows
I had surgery for carcinoid tumors in my small bowel and abdominal cavity 12 years ago, at Jacksonville Mayo. The report was that the tumors had metastacized, and they told me that I did not need further treatment, but to watch for the development of carcinoid syndrome. I had one small, fatty tumor on my liver, which has since disappeared. Although I have had no symptoms of the syndrome or regrowth of intestinal tumors (a possibility, they told me), I am wondering if I should have the HIAA and seratonin blood tests done just to see if anything is still active. I had my last check-up at Mayo two years after my surgery, and they told me I did not need to return until I had symptoms. My local doctors think if one is not actively ill, no need for tests. But I worry about what is there, and I should be more proactive about my health. Any advice, here, please?
, you had one that metastasized and a spot on your liver.But that disappeared which is wonderful. My question is, did you do anything in particular, that made it go away. And even though you had one metastasized, they didn't do any treatment.I'm just newly diagnosed and still going through this whole process
I'm so happy to hear your post-surgery report. Like @tomrennie, said it must feel good to have this part of your treatment behind you. As my surgeries for NETs was in the upper digestive tract, I'm wondering how the colon surgery has affected the way you eat. Were you given any dietary suggestions or restrictions?
A while back, I started a discussion, "How Do I Eat After Digestive Tract Surgery." Here is the link, https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
I would encourage you to read some of the posts and to post about your own experiences. I hope you continue to get your strength back and have good pain control. Will you continue to post about your progress?
Recently diagnosed with Pt4 and Pn1 grade 1 of small intestine. I am thinking stage 3 or 3b but not sure yet as I haven't seen oncologist yet for final say so... anyone out there with similar status?
My husband was diagnosed with carcinoid in 1995. He had one tumor removed between the Illium and the bowel. Seven of the 11 lymph nodes tested were malignant. At that time, there was no treatment. He had regular scans and tests for the first 12 years. All was fine. In December of 2023, 28 years later, he was rediagnosed with NETS Stage 4. He has tumors in his skull and body. He has been having a lanriotide injection every 28 days since January 2024 and everything is stable. He is 81 years old now, rides a stationary bike for 25 minutes and does 120 pushups daily. He does have some digestive issues. He hasn't liked many foods for the past 5 = 6 years which is probably when the tumors started growing. Some days are difficult when we look at the whole picture but we do our best to stay positive and appreciate every day that we have. He has proven that he can live a pretty normal life. Our only regret is that he didn't keep up with the yearly appointments as the lanriotide might have stabilized the tumors.
At a week out of surgery, I was not given any dietary restrictions, BUT I have placed myself on one for a little while. I eat more softer foods likes soups, peaches, rice and fresh fish when I can find it and the sort. Been wondering about other fruits and veggies. I will add mushrooms and items like that this week. To be honest, a lil scared about what the wrong foods for me will be like. I did learn that the bottom part of my colon, from my appendix area going up to about 12 inches or so was removed and parts of the area where the small intestine came into the larger was resected. So, I am still in the learning phase.
You are learning a lot about your new digestive tract landscape, @dchance1. The soft foods you describe are a good starting point, and adding other foods in small amounts is a good plan. This is the best way to discover any "trigger foods" that may cause uncomfortable digestive symptoms.
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I believe the pain was mostly from the incisions made for the robotic instruments and an area like another C-section where I believed they removed the affected colon. The incision were made from the left side all the way to the right. Thats a lot of 'meat' to go thru. lol. But seriously from the left all the way to the right lots of area to cut thru and was much worst then the missing colon area. That part was sore but not as bad as I thought it would be. Didn't realize that would be done that way.
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2 ReactionsWow, no wonder it was painful! I only have a vertical scar from belly button down to previous hysterectomy scar, but my surgery wasn’t robotic. Did you get your pathology report yet, stage & grade? Glad you’re feeling better!
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2 ReactionsNo not yet.. I do know that one part of it was grade 1.. which I understand is very slow growing.. YAY.. but no stage as I believe a lymph node was involved. And no knowledge is any further treatment is needed.. HOPING PRAYING .. we are DONE.. but who knows
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3 ReactionsPlease make sure you keep up on regular lab work & scans!
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3 Reactions, you had one that metastasized and a spot on your liver.But that disappeared which is wonderful. My question is, did you do anything in particular, that made it go away. And even though you had one metastasized, they didn't do any treatment.I'm just newly diagnosed and still going through this whole process
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1 Reactiongot some lab stuff back today....
PT4 PN1 .. not given a stage yet.. I am thinking its a stage 3? thoughts
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1 ReactionRecently diagnosed with Pt4 and Pn1 grade 1 of small intestine. I am thinking stage 3 or 3b but not sure yet as I haven't seen oncologist yet for final say so... anyone out there with similar status?
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Like -
Helpful -
Hug
1 ReactionMy husband was diagnosed with carcinoid in 1995. He had one tumor removed between the Illium and the bowel. Seven of the 11 lymph nodes tested were malignant. At that time, there was no treatment. He had regular scans and tests for the first 12 years. All was fine. In December of 2023, 28 years later, he was rediagnosed with NETS Stage 4. He has tumors in his skull and body. He has been having a lanriotide injection every 28 days since January 2024 and everything is stable. He is 81 years old now, rides a stationary bike for 25 minutes and does 120 pushups daily. He does have some digestive issues. He hasn't liked many foods for the past 5 = 6 years which is probably when the tumors started growing. Some days are difficult when we look at the whole picture but we do our best to stay positive and appreciate every day that we have. He has proven that he can live a pretty normal life. Our only regret is that he didn't keep up with the yearly appointments as the lanriotide might have stabilized the tumors.
-
Like -
Helpful -
Hug
2 ReactionsYou are learning a lot about your new digestive tract landscape, @dchance1. The soft foods you describe are a good starting point, and adding other foods in small amounts is a good plan. This is the best way to discover any "trigger foods" that may cause uncomfortable digestive symptoms.