Stage 4, High-Grade Neuroendocrine carcinoma
Last night I was diagnosed with stage 4 Neuroendocrine carcinoma but there are no tumors. My cancer is in the hormone cells of my whole body. I do not yet know all the technical terms are but my entire lymphatic system has this cancer in it. They are doing an MRI next week to see if it has gotten into my brain. They are starting two kinds of chemo on the 21st, one of which is platinum. Has anyone here had a similar diagnosis?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hello @kim2022 and welcome to Mayo Connect. While we wait for others to respond to your questions about this type of Neuroendocrine carcinoma as well as the chemo treatments, I was wondering if you could share a bit about the journey that led to this diagnosis.
For example, what symptoms were you having that began the diagnostic tests? Have you had a Gallium 68 PET scan? Are you seeing a NET specialist?
Aw I am sorry to you. There is a Facebook group with nec. Very helpful. This women runs the group. She’s wonderful. Please reach out. There is many many resources and support
On October 30th I went to ER for discharge from left breast. They did CT Scan with contrast. Doctor came in and said I had cancer. I was admitted to hospital for testing and discharged. The only further info I was given at that time was that it was through the entire left side and lower part of my lymphatic system. On November 5th went to Rocky Mountain Cancer Center and met with doctor where I was diagnosed with stage 4, high grade Neuroendocrine carcinoma with no active tumors and no known origin. I will go tomorrow to get a line put in and start chemo on 21st. I will meet with a gynecology oncologist surgeon on 16th to discuss removing my ovaries as I already had hysterectomy. They found two masses on right ovary and want to to do this surgery as precaution. On 17th they are doing PET scan to make sure they are no tumors that weren't found on CT or all the ultrasounds already done. They are also going to do an MRI to make sure it has not spread to my brain. I currently have NO other systems which is why this is all so stunning. They said the discharge was caused because the hormones in the breast are so active. Right now that is all the info I have.
@kim2022 I can only imagine what a shock the diagnosis must have been. Many of us, myself included, have had neuroendocrine tumors with no symptoms. I'm glad to hear that you are at the Rocky Mountain Cancer Center. Dr. Eric Liu is there, and he is a very well-known neuroendocrine specialist. Are you seeing Dr. Liu?
Will you keep me updated as you have a surgery date and begin chemo? Do you have any other questions?
I had a neuroendocrine tumor on my rectum 2019… this had been in the back of my head all this time so far I’m diagnosed with “HSD and POTS”… help please 🙏🏻
@lidiana, what treatment did you have for the rectal neuroendocrine tumor? Are you considered in remission now?
@kim2022, you are in the right place to talk about stage 4, high grade neuroendocrine carcinoma with no active tumors and no known origin. It must be unsettling to hear that, not only do you have cancer, but its origin is unknown.
May I ask why you had a hysterectomy? Was this before your diagnosis and unrelated to cancer?
Back in 2019 they said NED. But I’m not sure as right now because I had cysts since they found the rectum one, I did wanted to verify what where those cysts cuz now I’m developing multiple on kidney, ovaries and neural foramina spine part. I also have one on the brain but that’s congenital. My bowel biopsy is showing edema and lymphocytic aggreggates and my bladder has hypervascular spot the back (I have retention and recurrent UTIs) and the biopsy sad chronic inflammatory changes. The vascular expert consider my bowels “Mild diffuse small bowel dilation without obstruction”. My PET said I have “physiological uptake in small and large bowel”. I’m having a lot of night sweats and loosing weight. I’m in a lot of pain. Everything seems worst when on my period I honestly feel like a having corset with spikes and a full body suit made of life jellyfish and fire ant stings pain + itch, mild fever, intense headache, severe nausea, and the hot flashes uufff are horrible 😓
Also they are searching from the bottom to the top meaning less threatening like for possible untreated or undiagnosed endometriosis and I have an intramural fibroid that’s possible going to get biopsied. 🤷🏻♀️😢 this has been too much for me. It means a lot to be able to talk and connect with others, this pain is so great that limits me a lot.
@colleenyoung I had the hysterectomy in 2014 because they found 3 fibroid tumors that were extremely large. Since I wasn't going to have more children, and had a history of fibroid tumors, doctor thought it best just to have hysterectomy. Currently all of my cancer treatment has been placed on hold because insurance just told us that none of the scans, tests, or chemo is medically necessary. Doctor is furious so RMCC is going to appeal. Now we are in wait to see what happens next mode.