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, 2025

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, 2025

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, 2025

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!

jadees | @jadees | Dec 6, 2025

Great posts , we got tired of listening to well meaning family and friends who have found something wonderful as an alternate treatment . Choosing to to listen and follow the people who have made a career of treating this monster has given us an extra year now , and we will keep listening .

nannybb | @nannybb | Dec 6, 2025

In reply to @tomrennie "I have been stage 4 since the beginning primarily to the liver. It likes to play..." + (show)

@tomrennie Tom, were you the one that advised me to see a NETs specialist and then directed me to OSHU in Portland, Oregon?

Turkey, Volunteer Mentor | @tomrennie | Dec 6, 2025

In reply to @nannybb "@tomrennie Tom, were you the one that advised me to see a NETs specialist and then..." + (show)

@nannybb I gave you two doctors in Oregon from the Carcinoid Cancer Foundation's website:
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
One was:
Rodney F. Pommier, MD
Professor of Surgery
Oregon Health & Science University

nannybb | @nannybb | Dec 6, 2025

In reply to @tomrennie "@nannybb I gave you two doctors in Oregon from the Carcinoid Cancer Foundation's website: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/ One..." + (show)

@tomrennie I thought it was you 🙂 This is going to be a bit long. Sorry in advance. I saw Dr. Pommier last Monday. He is definitely the doctor I should have seen first. He has an excellent bedside manner, and he reviewed all my chart notes before seeing me. He said there are two diagnostic possibilities. One was a very small typical carcinoid tumor, which I was operated on for. The second possibility is that I have DIPNECH (diffuse intrapulmonary neuroendocrine cellular hyperplasia). He felt the later was the correct diagnosis because the pathologist called the tumor a " tumorlet" on the biopsy report. He said there is no way to tell if I have DIPNECH without looking at the other 3 nodules I presently have. He is not going to do that surgically. He recommends wait and watch. I looked him straight in the eye and asked if he would have operated on the first tumor. His words were "I'm not going to lie to you...no". He left the room for a minute and I burst into tears. He is going to address the horrible pain I have been in for 5 months through a referral to pain management, and see me again to possibility start injections of Sandostatin LAR therapy and assess symptoms and PTFs. None of this verbiage was even mentioned by the surgeon who operated. The fist surgeon just continued giving me time to heal without honestly addressing the constant pain issue. I cannot thank you enough for your knownowledge in recognizing that I needed a second opinion from a NETs specialist. You wanted me to let you know what I thought about him, (for giving further referrals). He obviously knows what he is doing, and I am sticking with him as my cancer doctor. Thank you SO much.
B.