Neuroendocrine Tumor - no treatment plan method

@hopeful33250

Thank-you ... I feel prepared for all of my upcoming appointments. Things are happening very quickly. I'm a retired nurse and worked at UIHC so it's all good!

@doonman

I listened to a seminar from 2021 about NETs. One part struck me as being strange because it said "surgical removal" was the first treatment option for a NET. Surgical removal was contingent on the NET being localized and hasn't spread. For emphasis, it said the second treatment option was also surgical removal.

My primary NET is the distal ileum and localized but it has spread to 2 nearby lymph nodes in the mesentery. Everything suggests the surgical option will be recommended to me next week.

May I ask how much "remodeling" of my abdomen might be done? I'm leaning toward "playing for a draw" and just being treated medically. I currently don't have any symptoms that bother me. The thought of having abdominal surgery really bothers me!

@meleve I’m hoping to find out more information as well. I’m having the same problem. With 2opinions I’m still in a lot of pain and now my insurance won’t cover the CREON and it doesn’t feel like the prescription Zenpep helps.

@ceefer
I see that you have obtained a second opinion. Was this with a 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/

Often, when a medication is not approved by insurance, the doctor's office can contact the insurance company to request approval for an alternative medication that will be more effective. Has your doctor's office talked with your insurance company about getting the Creon approved?

@hopeful33250 no they just gave a prescription for Zenpep, which doesn’t help like the Creon does. It was not a NET specialist. I have finally gotten an appointment with one for June.

@ceefer,
I am glad that you will be seeing a NET specialist in a few months. In the meantime, you might ask your current doctor to contact your insurance company to appeal their decision about the Creon. It is certainly worth trying if Creon is more effective.

@dadcue I'm not a doctor, so my opinion is just that an unqualified/unskilled opinion. For me the in 2004 the removal of my tumor which was in my small intestine along with my appendix, ileum and 30 lymph nodes in my mesentery of which 8 tested positive for cancer gave me 21 years (give or take) of being cancer free with only minor abdomen issues. I had a laparotomy during my 2004 stay in the hospital. It took probably 12-18 months for me to create a new normal, but it was close to the old normal. Removal now 21 years later is not recommended because the oncologists all believe my cancer (per scans, etc) is not localized, hence Lanreotide injections. As I stated before I am not a doctor, but I believe your doctors know best. Playing for a draw when the doctors sound like they can do better, I'd bet on the doctors. If I may ask how old are you and are you in good shape? I understand why your apprehensive regarding surgery, who wants to have surgery? I hope my answer helped a smidge. Good Luck to you.