Neuroendocrine Tumor - no treatment plan method

@dadcue I take capecitabine to control my pnet and metastasis. It is a chemo pill.

This discussion is helpful to me as a caregiver to a dear friend who has just be diagnosed with a neuroendocrine tumor in the rectum that has spread to the liver and lungs. She found out about the cancer after going to urgent care for what she thought was a cracked rib. It was very painful but I guess that was good because going to urgent care led to a diagnosis. She was hospitalized after being sent to the emergency room and after the doctor saw the results of the CT scan. That was on April 16 so it's day 12 in the hospital and doctors are still trying to get her pain under control so she can go home on oral pain meds. The palliative nurse was in twice today because she is trying different combinations and strengths of pain medicine. If the pain can be managed, my friend will go home and then can begin work with the oncology team to develop a treatment plan. Thanks for any helpful suggestions.

Hello @mlveal, and welcome! I'm so sorry to hear of your friend's pain and diagnosis of neuroendocrine tumors. It sounds like she is going through a difficult time, and it is very kind of you to want to help her.

From your post, it appears that she will be meeting with oncologists once her pain is under control. As neuroendocrine cancer is a rare form of cancer, my first thought would be to encourage her to be seen by a neuroendocrine (NET) specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

Before her cancer diagnosis, how was her health? Does she have any other chronic disorders?

@hopeful33250
Thank you for your message. Since the diagnosis is relatively recent, we have not discussed a visit to a Mayo Clinic but will consider it when she comes home. We think that will be tomorrow. Prior to this diagnosis, she had breast cancer 5 years ago and last fall in the other breast. She had lumpectomy each time and 36 radiation treatments with the first cancer. The 2nd one did not require radiation as the lumpectomy had clean margins. In addition, she was an elite athlete in college and now lives with chronic pain due to 14 different surgeries to knees, shoulder, and spinal fusion. My friend is one tough cookie but this diagnosis has thrown her very hard. We will definitely find a NET specialist as quickly as possible. Thanks for the links.

@mlveal

Your friend has certainly experienced a lot of health issues. It is good to know that she is, as you said, "one tough cookie." That will be to her benefit as she faces NETs.

Is she at home now?

@hopeful33250
No they are keeping her for one more day. She has been on attenanal (SP?) for 20 years and it was apparently causing low blood pressure so they withdrew the drug in hopes that her blood pressure would return to a more normal level. If that works, I think she will go home tomorrow.

@mlveal Will you post updates and let me know how she is doing?

@hopeful33250
Yes, I will post updates, especially those dealing with suggested treatment. We have an appointment with her oncology team on Monday, May 4 and she is being released from the hospital tomorrow, April 30. The good thing about being in the hospital for 2 full weeks is she had time to let the diagnosis sink in, ask questions, and be treated for pain. I have located a NETs specialist not too far away, and after we see the local oncology team, we will try to schedule an appointment with the specialist. Thank you for your concern. The support group is very helpful to my mental health.

@mlveal Oh, I'm glad you feel supported here on Mayo Connect. When I joined Connect, I was facing my third surgery for NETs. As it had been 11 years since my 2nd surgery, I really needed a community like this one, which could tell me that they had also lived through recurrences.

I will look forward to hearing from you again with any questions or updates!

@hopeful33250

Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The site is a WEALTH of information and what I especially appreciate are the videos available on YouTube. The videos are typically the copy of a live event, whether it be a conference or a NET specialist addressing a specific type of NET, e.g., small bowel (SB) NET, or a pancreatic or lung NET. The information is invaluable, especially for those who have NO IDEA what to expect when diagnosed with NET.

They have videos such as: Neuroendocrine cancer 101... the most basic of information and advance from there; and while reading questions from many Mayo Connect posters, they appear to be floundering and have no idea NETRF should be, in my opinion, the 1st place to use to begin learning about NETs.

While the Connect moderators are okay, your posts are the only ones I've read that offer other resources other than Mayo (which is pretty poor dishing out info, IMO). NETRF is a one-stop shop for finding accurate, in-depth, NET specialist(s) medical information).

I've pretty much given up reading Mayo Connect due to lack of information - seems more like the blind leading the blind, desperately wanting help and support. Connect is good for support, not so much for 'real' educational NET info.

Sorry to be a Debbie Downer, and this post IS only my opinion, but I haven't learned one thing new about NETs from Mayo Connect, 🙁 (and I'm an "info junkie" who researches everything I can, including journal articles from reputable sources using PubMed, nih.gov articles, etc.)