1. < Neuroendocrine Tumors (NETs)
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My doctors know nothing

Posted by Turkey, Volunteer Mentor @tomrennie, Jun 13, 2023

There seems to be a general distrust of all doctors. That is sad. No matter how much homework I do, no matter how much I read and study, no matter how many big words I can regurgitate, I am still not a doctor. I can find anything on the Internet to contradict everything my doctors have told me. I choose not to do that. I choose to work with them. We have cancer. Testing for it, treating it, and living with it is going to hurt. There is no avoiding it. But working with and trusting my doctors has significantly reduced my pancreatic NET tumors. My innumerable lesions on my liver have stabilized. 9 months of CAPTEM have made a huge difference. The first few months were hard. The CAPTEM made me so sick. But working with my doctors, we found some support meds that make the treatment tolerable. I am mid cycle, and I am going for a morning walk with my dog. Getting out of bed wasn't possible 9 months ago. I love my doctors.

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

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haelsky | @haelsky | 19 hours ago
In reply to @jerrydanhuffman "My hat is off to all of you, and I know how difficult a positive attitude..." + (show)
Profile picture for jerrydanhuffman @jerrydanhuffman

My hat is off to all of you, and I know how difficult a positive attitude is to maintain. My NET seems to be so much less complicated and complex than anyone's I've read about. I am so very grateful and thankful for your willingness to share your stories. NET can be a lonely disease, when the general public and very few medical professionals have never heard of it. I am new to all of this including being a member of a Support Group, something I've never done in my life. I am grateful to have the opportunity to converse with all of you.

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@jerrydanhuffman
I have never belonged to any on line support groups Since my diagnosis of NET of the lungs , I have found information and support from Mayo and Lovable Lungnoids.
I too am amazed at the resilience of individuals who have Neuroendocrine Cancers and their willingness to share their experiences and knowledge.

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Teresa, Volunteer Mentor | @hopeful33250 | 18 hours ago
In reply to @jerrydanhuffman "My hat is off to all of you, and I know how difficult a positive attitude..." + (show)
Profile picture for jerrydanhuffman @jerrydanhuffman

My hat is off to all of you, and I know how difficult a positive attitude is to maintain. My NET seems to be so much less complicated and complex than anyone's I've read about. I am so very grateful and thankful for your willingness to share your stories. NET can be a lonely disease, when the general public and very few medical professionals have never heard of it. I am new to all of this including being a member of a Support Group, something I've never done in my life. I am grateful to have the opportunity to converse with all of you.

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@jerrydanhuffman and @haelsky

Yes, those of us with NETs do stick together and share our experiences in a unique way. I think you are right, @jerrydanhuffman, when you say that NETs can feel like a "lonely disease." It is infrequent for us to have friends and family members (and even doctors) who have had to deal with this type of cancer. As a result, we feel a need for camaraderie. I'm glad that you found what you need here on Mayo Connect.

How are you both doing with your treatment?

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jerrydanhuffman | @jerrydanhuffman | 17 hours ago

My treatment seems to be going well. The oncologist I have offers little or no explanations about blood tests, etc. My cancer is described as stable with lanreotide injections. Pancrelipase seems to have been effective in aiding digestion and reducing the side effects of injections. It is almost impossible to predict how I will react to the lanreotide injections. Sometimes there is no reaction at all. Almost immediately following the last injection, I had to go to bed with very painful bowels, diarrhea and then oily, light colored and very smelly stools and almost zero energy. I have identified a possible temporary change in the pancrelipase dosage immediately preceding the injection that may be of assistance to that in the future. Levels of blood sugars have been elevated, but not into panic stages, yet. Today I am going to try to make an appointment with a local endocrinologist who has some experience on the NET side of things.

I am grateful to Mayo Connect and wish good luck and good fortune to everyone!

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