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What helps with gas and pain after surgery?
Cancer: Managing Symptoms | Last Active: Jan 7, 2023 | Replies (21)Comment receiving replies
Forgive me if any of this is unclear. I’m still not sure what exactly I went through. I am 28 years old. I had an emergency appendectomy 7 months ago. Pathology found a neuroendocrine tumor at the base of my colon. To which I had additional scans to locate several more polyps. My right colon was removed 4 weeks after my appendectomy. My surgeon says I’m fine and to up my fiber. I go for another CT in 2 weeks. I have had ongoing diarrhea since and can count on one hand the times my BM have been solid. I have hardly no appetite. I lost 90lbs in 8 months. I am now at average weight for my height, so not underweight. After eating even small amounts I’m typically nauseated and in the bathroom within the hour with terrible diarrhea. In addition, night sweats, increased anxiety, pelvic pain that comes and goes several times a week. I’m aware that this could be stress? Medical anxiety maybe? I didn’t have these issues prior to the right hemicolectomy. I have also in the last two weeks sprouted an incisional hernia that I have to see another surgeon about. I am so miserable I’m probably forgetting things because it’s just how life is these days. I’d appreciate any feedback. Thank you in advance!
Replies to "Forgive me if any of this is unclear. I’m still not sure what exactly I went..."
Hello @andrea5815
I'm glad that @colleenyoung, invited me to this conversation. I have had three surgeries for NETs in the upper digestive tract and I can certainly understand your discouragement over the surgeries and the post-surgery problems you are having. What I would be most concerned about is diarrhea, which can be a symptom of carcinoid syndrome. Has your doctor mentioned this?
The first thing to consider: Is your oncologist a NET specialist? If not, you should consider consulting with a NET specialist sooner rather than later. General oncologists are not as well versed in NETs as are specialists. Here is a listing of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If you see a name for a doctor relatively close to you, please consider calling for a consultation. Most NET specialists will work with your local doctor after an initial consult. NET specialists are well-trained in the latest treatment for this rare type of cancer. This is the type of doctor you want on your side.
The next thing to be considered is the possibility that you may have carcinoid syndrome, which is characterized by diarrhea as you have described. There are monthly injections and other treatments that can help you. Once again a NET specialist may be helpful in determining appropriate treatment.
You mentioned that you will be having a CT scan. Have you had a Gallium scan? This is the best scan for finding NETs. Here is some information from a Mayo radiologist about the Gallium scan used by Mayo for NET patients https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/. A Gallium 68 scan is usually available in larger medical centers. This type of scan is the most effective for NET patients.
Have you had blood work done such as a serotonin blood test or a 24-hour urine test for serotonin? If so, what was the serotonin level?
I look forward to hearing from you again, Andrea. Will you continue to post with any questions or concerns?
Hello @andrea5815
As a newly diagnosed NET patient, I would like to invite you to a monthly virtual support group that Mayo Clinic offers. It will be held on May 5. Here is the information for registration. Please register in advance in order to get the Zoom link emailed to you
Round Table Discussion
Location: Virtual (Zoom)
Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi
After registering, you will receive a confirmation email containing information about joining the meeting.
For questions or concerns, please call 904-953-6831
This will be a round table discussion, where you and the other members can share your journey with NETs diagnosis and treatment. I hope you can attend!
My goodness, I'm in utter shock how symptoms mirror mine. First thing is I understand. I was diagnosed stage 4 anal cancer. First round of chemo about killed me thus the next was canceled. The 30 treatments of radiation therapy were probably the hardest thing I have ever done in my life and wish no one to have to endure that. I would tell you that experiment with your ointments and pastes and lidocaine is the most effective to help pain. It truly was magic just that I had to use it after every trip to the restroom. Everyday changing pull ups and putting the bum balm on is exhausting. Sleeping on the floor next to the tub got old. My thoughts and heart are with you and just keep the good fight up.
Julie
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Hi @andrea5815. It looks like things went really quickly for you from emergency appendectomy to the discovery of a neuroendocrine tumor, further surgery and unexpected side effects. I can imagine you're still processing what you went through.
I added your question to the Neuroendocrine Tumors (NETs) group too. I did this so you can meet other members like you, like @amandafl @hopeful33250 @amariewilkinson @elm60 @lenorahaston and others.
You've been through a lot and you're wise to also consider stress as a contributing factor. Honestly, 6 months is not a long time after such major digestive tracts surgeries. You're still healing and adjusting.
Have you talked to your cancer care team about these ongoing GI issues? A symptom management nurse or oncology dietitian?