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.

Colleen Young, Connect Director | @colleenyoung | Oct 22 8:46pm

In reply to @kbtexan "Thank you for your response. I don't know what NERF is or where to find it." + (show)

@kbtexan, I believe that @millds was referring to NETRF Neuroendocrine Tumor Research Foundation https://netrf.org/

@millds, how did you cope with the PTSD? What triggered it?

millds | @millds | Oct 23 6:50am

In reply to @colleenyoung "@kbtexan, I believe that @millds was referring to NETRF Neuroendocrine Tumor Research Foundation https://netrf.org/ @millds, how..." + (show)

@colleenyoung You are correct. I mistyped and it is NETRF!
To deal with the stress, I found ways to educate myself regarding NETS. There are additional online groups supporting NETS education and research. I started a regional support group. This helped me to have in depth conversations with my doctors and to find support locally.
We also found a perfect support dog. I say we because my husband has walked this journey with me. She was 4 when we brought her home and she is calm, loving and easily trained. Our Lady goes almost everywhere with us. She is a rough coated Collie.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 28 2:43pm

In reply to @millds "@colleenyoung You are correct. I mistyped and it is NETRF! To deal with the stress, I..." + (show)

Hello @millds

I hope you can join the Mayo Clinic NETs support group, which meets monthly. Our next meeting is on November 6, via Zoom. Here is a link about the guest speaker as well as how to register for the meeting in order to obtain the Zoom link,
https://connect.mayoclinic.org/comment/1424759/
After the speaker, there is time to share with other members of the group. It is a great way to learn more about the various treatments and meet others who are on the same journey. I hope you can join us!