1. < Neuroendocrine Tumors (NETs)

Any tips about Cytoreductive, debulking Surgery?

Posted by ginnym3 @ginnym3, Nov 16, 2023

I have been referred for cytoreductive/debulking surgery (at Mayo Jacksonville) because my scans show unexpected, fairly significant progression of the disease. I meet with the surgeon, Dr. Bagaria, next Tuesday, Nov. 21, for a consult. The recommendation by Dr. Starr is that I have the primary tumor in ileum removed along with any other a affected areas in small bowel and lymph nodes, removal of enlarging peritoneal tumor(s) that are pressing on my liver causing pretty intense pain, and a full hysterectomy because tumors in ovaries are growing. Obviously, this is an incredibly major surgery - 3 parts all in one, as I see it - and I am scared. What suggestions do any of you have for important questions I should ask the surgeon next Tuesday? I'm swimming in shock (this progression was truly unexpected by all of us) and just trying to maintain some 'control' over anything that I can, which right now seems to be the planning and preparation for appointments and eventually this surgery. Thank you for any recommendations.

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

pavlina60 | @pavlina60 | Nov 17, 2023

Hello, ginnym3! I went to debulking surgery for a large pancreatic tumour (20×16 cm) with liver metastases, combined with total hysterectomy due to endometrial cancer (unrelated, not NET). 9 hrs surgery, 1 week in the hospital.
My advice - you have to go to surgery as physically fit as possible! ( makes recovery faster). I asked the surgeon about the worse case scenario - feeding tube, colostomy bag ( luckily I escaped all of that). Due to the size of my tumour and metastases plus hysterectomy it can only be done with open surgery ( not by laparoscopy). Ask if you will be on medications ( like Lanreotide) which can damage the gallbladder, so it needs to be removed also. I have my spleen removed which requires additional vaccines. If you have specific questions - ask me! Good luck, you can do this!!

REPLY
1 reply
ginnym3 | @ginnym3 | Nov 17, 2023
In reply to @pavlina60 "Hello, ginnym3! I went to debulking surgery for a large pancreatic tumour (20×16 cm) with liver..." + (show)
@pavlina60

Hello, ginnym3! I went to debulking surgery for a large pancreatic tumour (20×16 cm) with liver metastases, combined with total hysterectomy due to endometrial cancer (unrelated, not NET). 9 hrs surgery, 1 week in the hospital.
My advice - you have to go to surgery as physically fit as possible! ( makes recovery faster). I asked the surgeon about the worse case scenario - feeding tube, colostomy bag ( luckily I escaped all of that). Due to the size of my tumour and metastases plus hysterectomy it can only be done with open surgery ( not by laparoscopy). Ask if you will be on medications ( like Lanreotide) which can damage the gallbladder, so it needs to be removed also. I have my spleen removed which requires additional vaccines. If you have specific questions - ask me! Good luck, you can do this!!

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Thank you for your reply. I was beginning to wonder if I would hear back from anyone.

I am very fit - something my oncologist took into consideration when he talked with me about how extensive this will be, and how he feels I can recover from this with quality of life intact: different but intact. I don't have my gallbladder. And yes, this will be an open surgery due to how many issues will be taken care of at once and the size of the tumors in both my SI and on the peritoneum.

Thanks again for your response!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 17, 2023
In reply to @ginnym3 "Thank you for your reply. I was beginning to wonder if I would hear back from..." + (show)
@ginnym3

Thank you for your reply. I was beginning to wonder if I would hear back from anyone.

I am very fit - something my oncologist took into consideration when he talked with me about how extensive this will be, and how he feels I can recover from this with quality of life intact: different but intact. I don't have my gallbladder. And yes, this will be an open surgery due to how many issues will be taken care of at once and the size of the tumors in both my SI and on the peritoneum.

Thanks again for your response!

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Hi @ginnym3

It looks like @pavlina60 has provided you with some good questions to ask your surgeon at your Tuesday appointment. Since your surgery will at Mayo, it is my understanding that a registered dietician will meet with you after your surgery and help you plan your diet after discharge. If might be helpful to have someone with you who can take notes.

I look forward to hearing from you after you meet with the surgeon. Will you post again with an update when it's convenient?

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1 reply
lyons1234 | @lyons1234 | Nov 17, 2023

Hello jinnym3
Stony Brook University Hospital on Long Island specializes in CRS & HIPEC
Procedures.
Surgical Onocology Division
(631) 444-8086
Cancer help line (800) 862-2215. Staffed by an oncology nurse available to answer questions or connect with physician. They may be a good additional resource although it sounds like your in good hands.
Good Luck

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1 reply
ginnym3 | @ginnym3 | Nov 18, 2023
In reply to @hopeful33250 "Hi @ginnym3 It looks like @pavlina60 has provided you with some good questions to ask your..." + (show)
@hopeful33250

Hi @ginnym3

It looks like @pavlina60 has provided you with some good questions to ask your surgeon at your Tuesday appointment. Since your surgery will at Mayo, it is my understanding that a registered dietician will meet with you after your surgery and help you plan your diet after discharge. If might be helpful to have someone with you who can take notes.

I look forward to hearing from you after you meet with the surgeon. Will you post again with an update when it's convenient?

Jump to this post

Yes. I will provide an update. I appreciate your response. I also am glad that a nutrition consult will be part of discharge but it would also be helpful to have some appropriate foods already frozen or available when I get home post-op. I do all of our meal planning and preparation so my husband will be somewhat at a loss.

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1 reply
ginnym3 | @ginnym3 | Nov 18, 2023
In reply to @lyons1234 "Hello jinnym3 Stony Brook University Hospital on Long Island specializes in CRS & HIPEC Procedures. Surgical..." + (show)
@lyons1234

Hello jinnym3
Stony Brook University Hospital on Long Island specializes in CRS & HIPEC
Procedures.
Surgical Onocology Division
(631) 444-8086
Cancer help line (800) 862-2215. Staffed by an oncology nurse available to answer questions or connect with physician. They may be a good additional resource although it sounds like your in good hands.
Good Luck

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Thank you for this information. I do feel very confident that I am in the very best hands at Mayo. But I appreciate the additional help.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 19, 2023
In reply to @ginnym3 "Yes. I will provide an update. I appreciate your response. I also am glad that a..." + (show)
@ginnym3

Yes. I will provide an update. I appreciate your response. I also am glad that a nutrition consult will be part of discharge but it would also be helpful to have some appropriate foods already frozen or available when I get home post-op. I do all of our meal planning and preparation so my husband will be somewhat at a loss.

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@ginnym3,

I can understand you wanting to have food prepared in advance. Most of us who have had any type of surgery for NETs have found that a low residue, low fat eating plan works well. Soups (without beans or other fibrous veggies) like chicken noodle will work well. Also, pureed foods/soups are great. I have a folder of low-residue soup recipes, like Carrot-Ginger, Squash soup, Sweet Potato with Peanut Butter, etc. I puree these all with an immersible blender.

Smoothies are my breakfast go-to even though my last surgery was in 2016.

Probably eating small, frequent meals is most important. If you try to eat a large meal you will probably feel discomfort. So small meals will be your friend!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2023

@ginnym3, you're in great hands with Dr. Starr and team. You may also be interested in this related discussion that @mkmn started a while back and the experiences shared by @sandy23 and @gsm13161.
- NETs: Anyone has Liver debulking for liver metastasis?
https://connect.mayoclinic.org/discussion/net-liver-debulking/
I'll be thinking about you tomorrow.

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splendrous | @splendrous | Oct 23 8:19pm

Hi, I am reading your posts with interest. I have a 4x3 cm neuroendocrine metastatic tumor in my liver and another one on the other lobe. I have no symptoms at this time. KI 67 6-8%, well differentiated. They suspect the origin is in the GI track but since I have no symptoms & they do not feel additional testing is required or treatment. I have not been given any information on what I should expect in the future. This info was from an e consult with Mayo Clinic. I am considering whether I should get a second opinion with MD Anderson. Dr Daniel Halperin is now employed at Emory in Atlanta where I live. Appreciate your sharing your journey.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 24 9:45am
In reply to @splendrous "Hi, I am reading your posts with interest. I have a 4x3 cm neuroendocrine metastatic tumor..." + (show)
@splendrous

Hi, I am reading your posts with interest. I have a 4x3 cm neuroendocrine metastatic tumor in my liver and another one on the other lobe. I have no symptoms at this time. KI 67 6-8%, well differentiated. They suspect the origin is in the GI track but since I have no symptoms & they do not feel additional testing is required or treatment. I have not been given any information on what I should expect in the future. This info was from an e consult with Mayo Clinic. I am considering whether I should get a second opinion with MD Anderson. Dr Daniel Halperin is now employed at Emory in Atlanta where I live. Appreciate your sharing your journey.

Jump to this post

Hi @splendrous

I respect your diligence in seeking out opinions. Being proactive during this phase of diagnosis and possible treatment is very important. Will you continue to post as you have questions?

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