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Stage 4, High-Grade Neuroendocrine carcinoma

Neuroendocrine Tumors (NETs) | Last Active: Mar 6, 2023 | Replies (24)
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@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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Replies to "this is one of my dx. I found a lump in my groin 5-2022, took 2..."
Teresa, Volunteer Mentor | @hopeful33250 | Jan 25, 2023

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

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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Colleen Young, Connect Director | @colleenyoung | Jan 28, 2023

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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