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Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (411)

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@kim1965

I was diagnosed with NET in the Liver with multiple spots, and a mass on my pancreas. I completed 3 cycles of Chemo (pills only), and the MRI showed significant positive results, with the tumors that was mapped in the beginning showing around 50% reduction in both the liver and pancreas. The cancer from the original PET only showed in these two areas. Oncologist and Froedert Hospital in Milwaukee, have started a second round of 3 cycles of chemo (pills), with the plan being to evaluate with another MRI after 6-7 rounds of chemo. All the info that I could research online, states that NET has a high survival rate after 5 years, depending on other factors. During today's oncologist visit, we discussed NET and how other patients with NET are doing that the doctor is treating. I was disappointed to hear that the few he had passed away. My husband and I only found info that showed a very positive prognosis for NET, what are the facts on the prognosis for someone with liver and panceras NET, that is showing the very positive results I have so far. We were crushed hearing the info today.

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Replies to "I was diagnosed with NET in the Liver with multiple spots, and a mass on my..."

Hello @kim1965 and welcome to Mayo Connect. As you know, NETs are a rare type of cancer, and it is always best to seek a consult with a NET specialist. I would encourage you not to let your doctor's remarks devastate you until you seek a second opinion with a NET specialist.

Is it possible for you to have a consult (video if in-person is not possible) with a NET specialist at Mayo Clinic? It would be great to have another opinion. If you would like to contact Mayo for an appointment, please follow this link, http://mayocl.in/1mtmR63.

You are right in that most people with NETs do have good results with the right treatment. NETs are a slow growing cancer and that is good. How are you feeling? Are you able to eat comfortably and have energy?

Is it possible for you to get a second opinion?