1. < Neuroendocrine Tumors (NETs)

Stage 4, High-Grade Neuroendocrine carcinoma

Posted by kim2022 @kim2022, Nov 8, 2022

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.

lidiana | @lidiana | Nov 15, 2022
In reply to @kim2022 "@colleenyoung I had the hysterectomy in 2014 because they found 3 fibroid tumors that were extremely..." + (show)
@kim2022

@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.

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I hope everything goes as planned for your healing ❤️‍🩹 🙏🏻 I’m waiting for an evaluation for possible endometriosis and the intramural fibroid biopsy. I hope my plan gets put together since I am very symptomatic. I’m 115 pounds from 132…Blessings 🌼
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 16, 2022
In reply to @kim2022 "@colleenyoung I had the hysterectomy in 2014 because they found 3 fibroid tumors that were extremely..." + (show)
@kim2022

@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.

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Hello @kim2022,

I can only imagine how frustrating this is for your insurance to deny treatment. I'm glad that your medical team is planning on appealing this decision.

Have you had blood work such as Serotonin levels and/or the 24-hour urine test? What tests were done in the ER?

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maria957 | @maria957 | Nov 17, 2022

Hi firends, I am from Argentina, thank God we have good health professionals here, and some of them wirk for international Labs like Merck, Brystol Myres, etc. Yesterday I dad info from friends who work there. For Cervix NET G3 they suggest pembrolizumab. Here I found this helpful page. https://www.keytruda.com/how-does-keytruda-work/

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1 reply
maria957 | @maria957 | Nov 17, 2022
In reply to @maria957 "Hi firends, I am from Argentina, thank God we have good health professionals here, and some..." + (show)
@maria957

Hi firends, I am from Argentina, thank God we have good health professionals here, and some of them wirk for international Labs like Merck, Brystol Myres, etc. Yesterday I dad info from friends who work there. For Cervix NET G3 they suggest pembrolizumab. Here I found this helpful page. https://www.keytruda.com/how-does-keytruda-work/

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Sorry for my typos!! dad is had and wirk is work! Love to you all!

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cu2 | @cu2 | Jan 3, 2023
In reply to @lidiana "Also they are searching from the bottom to the top meaning less threatening like for possible..." + (show)
@lidiana

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.

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My Prayers be with you because this is not easy to go through. I needed to have a mental health therapist to help me to make all these emotions I go through make sense. I read here a lot and I may not comment but the courageousness and strength of character shown here really inspires me to keep pressing forward. This takes 1 day at a time and it requires meditation daily. Best wishes for good outcomes for 2023 🙏🏽

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sherikayb | @sherikayb | Jan 24, 2023

this is one of my dx. I found a lump in my groin 5-2022, took 2 months for a biopsy. then all the testing started. I have 3 places for sure in my lymph nodes, in the subcutaneous tissue between my vaginal wall and rectal wall and on my adrenal gland. Dr. at UTSW in Dallas started very aggressive chemo. Every 3 weeks for 3 days, as of today I have had 6 rounds. I also sought another opinion from MD Anderson, he thought with chemo and radiation he could cure me, no one has used that word since the beginning of this journey. But when the biopsy of my adrenal gland came back positive radiation wasn't an option. I am going down to Houston on Sunday for scans and blood work and to see the DR. not sure how we will proceed.
For the most part I still work and just experience extreme fatigue, I certainly cannot do everything I was doing before chemo started. I have no pain per say but I do need a knee replacement, I am a 64yo white female. Thanx for all your comments I think they have helped me.

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3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 25, 2023
In reply to @sherikayb "this is one of my dx. I found a lump in my groin 5-2022, took 2..." + (show)
@sherikayb

this is one of my dx. I found a lump in my groin 5-2022, took 2 months for a biopsy. then all the testing started. I have 3 places for sure in my lymph nodes, in the subcutaneous tissue between my vaginal wall and rectal wall and on my adrenal gland. Dr. at UTSW in Dallas started very aggressive chemo. Every 3 weeks for 3 days, as of today I have had 6 rounds. I also sought another opinion from MD Anderson, he thought with chemo and radiation he could cure me, no one has used that word since the beginning of this journey. But when the biopsy of my adrenal gland came back positive radiation wasn't an option. I am going down to Houston on Sunday for scans and blood work and to see the DR. not sure how we will proceed.
For the most part I still work and just experience extreme fatigue, I certainly cannot do everything I was doing before chemo started. I have no pain per say but I do need a knee replacement, I am a 64yo white female. Thanx for all your comments I think they have helped me.

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Hello @sherikayb and welcome to Mayo Connect. It sounds as if you have been on quite a journey since May. Is your upcoming trip to Houston for a second opinion?

If you are comfortable shadow more, what type of chemo have you had?

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sherikayb | @sherikayb | Jan 26, 2023
In reply to @sherikayb "this is one of my dx. I found a lump in my groin 5-2022, took 2..." + (show)
@sherikayb

this is one of my dx. I found a lump in my groin 5-2022, took 2 months for a biopsy. then all the testing started. I have 3 places for sure in my lymph nodes, in the subcutaneous tissue between my vaginal wall and rectal wall and on my adrenal gland. Dr. at UTSW in Dallas started very aggressive chemo. Every 3 weeks for 3 days, as of today I have had 6 rounds. I also sought another opinion from MD Anderson, he thought with chemo and radiation he could cure me, no one has used that word since the beginning of this journey. But when the biopsy of my adrenal gland came back positive radiation wasn't an option. I am going down to Houston on Sunday for scans and blood work and to see the DR. not sure how we will proceed.
For the most part I still work and just experience extreme fatigue, I certainly cannot do everything I was doing before chemo started. I have no pain per say but I do need a knee replacement, I am a 64yo white female. Thanx for all your comments I think they have helped me.

Jump to this post

I DID GO TO MDA FOR A SECOND OPINION. HOWEVER I AM AN ESTABLISHED PATIENT NOW. I DID GO TO SEE A GYNO AT MDA AS MY DR AT UTSW IS A HEAD, NECK AND LUNG. DR. UTSW WANTED ME TO CONSULT WITH A GYNO. I HAD ALREADY SET THIS UP.
I HAVE CURRENTLY GONE THRU 6 ROUNDS OF CHEMO.( ETOPOSIDE, TECENTRIQ, CARBOPLATIN, IMMUNE THERAPY ATEZOLIZAMAB.)

MY VISIT IS FOR SCANS, BLOOD WORK, AND VISIT WITH DR. ON HOW TO PROCEED.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 28, 2023
In reply to @sherikayb "this is one of my dx. I found a lump in my groin 5-2022, took 2..." + (show)
@sherikayb

this is one of my dx. I found a lump in my groin 5-2022, took 2 months for a biopsy. then all the testing started. I have 3 places for sure in my lymph nodes, in the subcutaneous tissue between my vaginal wall and rectal wall and on my adrenal gland. Dr. at UTSW in Dallas started very aggressive chemo. Every 3 weeks for 3 days, as of today I have had 6 rounds. I also sought another opinion from MD Anderson, he thought with chemo and radiation he could cure me, no one has used that word since the beginning of this journey. But when the biopsy of my adrenal gland came back positive radiation wasn't an option. I am going down to Houston on Sunday for scans and blood work and to see the DR. not sure how we will proceed.
For the most part I still work and just experience extreme fatigue, I certainly cannot do everything I was doing before chemo started. I have no pain per say but I do need a knee replacement, I am a 64yo white female. Thanx for all your comments I think they have helped me.

Jump to this post

Hi @sherikayb, I'd like to add my welcome. I moved your message about having high-grade metastatic neuroendocrine carcinoma to this existing discussion:

- Stage 4, High-Grade Neuroendocrine carcinoma https://connect.mayoclinic.org/discussion/not-sure-if-i-am-in-the-right-place/

Click the link to read the previous posts. I did this so you can easily connect with others who have metastatic NETs like @maya8238 @kim2022 @maria957 and others.

I'm glad to hear that you are also seeing a gyne-oncologist. I'll be interested to hear what you learn at your upcoming appointment about next steps. Have you started a list of questions to ask?

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1 reply
sherikayb | @sherikayb | Jan 28, 2023

I do want to add that I tested positive for HPV, dont even ask how that happened?? I have been faithfully married for 25 years, so thats a big question as to how I got that. And all my pap smears have always come back totally fine.

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