Neuroendocrine Tumor - no treatment plan method

Hello @mimighosh,

I'm glad that you posted an update about your husband's treatment and that you encouraged others to seek a consultation with a NET specialist. It sounds as if the Lanreotide injections have not resulted in a lot of side effects. Has your husband's medical team suggested any other treatments?

I also had a grade 1 NET removed from my cecum during colonoscopy. I was referred to a specialist gastroenterologist who did another colonoscopy to make sure it was all removed. He told me that all the tumor was removed and I was as good as new and not to worry. But I continued to have severe diarrhea and weight loss so I asked for a PET scan. No oncologist or any of the GI Dr's would order one, saying it was not needed and insurance would not pay if it wasn't needed. I demanded to have a PET scan and said that I would pay for it myself if they would order it. Finally my oncologist ordered it. The NET in my cecum had metastasized to 2 lymph nodes, my liver and my heart!!! I live in Texas but go to Mayo Clinic in Phoenix...what a wonderful place! It was recommended to me to have a bowel resection but I chose not to have that and have been on Lanreotide injections every 28 days for the last 2 years. It has helped my diarrhea immensely. I've never had any flushing. I have CT scans and MRI's every 6 months at Mayo that show there have been no new tumors, and the ones I have in cecum, lymph nodes, liver and heart are stable with no new growth. I consider myself very lucky, but I know that eventually I may have to have resection and heart surgery. I just live every day with gratefulness and thank God that I'm alive. I also watch what I eat to help keep the diarrhea away. You can find dietary recommendations on netrf.com. I'm sending positive energy your way and praying that you find the answers you're seeking!

Thank you for sharing these parts of your journeys. I have a similar diagnosis to your original (@meleve and @helloitsme) (grade 1 NET removed during routine colonoscopy). The doctor who performed the colonoscopy sought consultation from a local oncologist once the pathology report showed it was a NET with margins involved. That oncologist said I could either have a repeat colonoscopy in 6 months or have the margins removed sooner if I'd like. Everyone locally seems to want to reassure me that it's a best-case scenario (grade 1, very small, "relatively benign"), but I am seeking a consultation from Mayo Clinic in Rochester (I'm in a rural area and I don't get the impression that the oncologist or the surgeon who did the colonoscopy procedure have experience with NETs). My concern is that, while the tumor that they found was relatively benign (not likely to metastasize), I don't know if they can tell if it's the primary site or if this is a metastasis from *another* site.

The plan for my consultation seems to include some blood work and a CT, I'm curious why no PET scan would be ordered. I've been chalking up other symptoms for the past year or so to stress (kid stuff) or peri-menopause (I'm 47), but now I'm a bit worried that I've got NETs elsewhere that are causing these symptoms, and I'm nervous that something will be missed without a PET scan. I don't want to pretend that I know nearly as much as a doctor or sound pushy, so I'm wondering how others might approach this, what to ask, or what others have seen. Thanks!

Thank you so much for this helpful information. I will definitely seek a second opinion and post a follow up

Thank you for sharing these parts of your journeys. I have a similar diagnosis to your original (@meleve and @helloitsme) (grade 1 NET removed during routine colonoscopy). The doctor who performed the colonoscopy sought consultation from a local oncologist once the pathology report showed it was a NET with margins involved. That oncologist said I could either have a repeat colonoscopy in 6 months or have the margins removed sooner if I'd like. Everyone locally seems to want to reassure me that it's a best-case scenario (grade 1, very small, "relatively benign"), but I am seeking a consultation from Mayo Clinic in Rochester (I'm in a rural area and I don't get the impression that the oncologist or the surgeon who did the colonoscopy procedure have experience with NETs). My concern is that, while the tumor that they found was relatively benign (not likely to metastasize), I don't know if they can tell if it's the primary site or if this is a metastasis from *another* site.

The plan for my consultation seems to include some blood work and a CT, I'm curious why no PET scan would be ordered. I've been chalking up other symptoms for the past year or so to stress (kid stuff) or peri-menopause (I'm 47), but now I'm a bit worried that I've got NETs elsewhere that are causing these symptoms, and I'm nervous that something will be missed without a PET scan. I don't want to pretend that I know nearly as much as a doctor or sound pushy, so I'm wondering how others might approach this, what to ask, or what others have seen. Thanks!

Hello @meleve,

I was thinking about you. A few months ago, you posted about seeking a second opinion. Have you scheduled that appointment yet?

I so hope you go to Mayo for a consultation & treatment! All NETs patients need to make sure they’re seeing a NETS Oncologist/Surgeon. “Regular” doctors do not have the expertise needed to treat NETS, learned this the hard way. You definitely have to be your own advocate, never give up on pushing forward for treatment especially if you’re symptomatic. I had multiple CT scans x 2 years & nothing showed up…2 years later I had a PET scan & my NETS had metastasized everywhere. Good luck to you!

Did anyone else ever see this chart from their doctors? I would love to hear everyone’s thoughts on this. As we don’t have a mayo clinic in Canada I wouldn’t be able to be seen. Anyone else have net under 1cm with clear margins that spread?