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Neuroendocrine tumors/cancer

JMS1989
JMS1989 CSN Member Posts: 1 Member
in Rare and Other Cancers #1

Hello all! I am curious as to if there is anyone else here fighting neuroendocrine tumors/cancer? I'm 36 years old & was diagnosed at 34 with my primary tumor site being in my small intestine and my appendix with mets to my liver. I'm currently being treated at Henry Ford Hospital in Detroit, Michigan and am receiving PRRT (Lutathera) every 8 weeks and Lanreotide injections every 28 days. I've had 3 debulking surgeries already and am also on the liver transplant list at Henry Ford as well. Please reach out to me if you're fighting this awful disease, I'm looking for support as it's very lonely being a young cancer fighter. Thank you in advance!

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Comments

  • pengwings
    pengwings CSN Member Posts: 1 Member
    #2

    Hello, Im sorry to hear of your diagnosis.

    I am new here but commenting because i have a history of a NET also appearing in my appendix, in 2019, which was removed in an appendectomy and discovered after-the-fact, just for context. Im 29, diagnosed with non-hogkins lymphoma of the pelvis this spring, almost done with chemo now I have one session left.

    I notice your post is from last month and hope you've found some other sources of support in the meantime. Youre right in saying it can be lonely being a young cancer fighter, but i see hope

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  • NADetroit
    NADetroit CSN Member Posts: 1 Member
    #3

    I am 78 years old and a neuroendocrine cancer patient, stage 4. The primary site of my tumor is my small intestine but, in my case, it was quietly metastasizing throughout my body long before it was discovered. I have been receiving Lanreotide injections since my diagnosis on 1/24 and had to have a small intestine resection in 10/24 so I could receive PRRT treatments. My last PRRT infusion is scheduled for 9/10/25 and I will get the rundown on 'what's next' after that is completed. I discovered a very diverse, informative group of neuroendocrine cancer patients (as well as many other cancer patients) through the Mayo Clinic Neuroendocrine Support Group. In addition to support and resources that are shared by patients from all over the world you will also learn their stories as they report their experiences as they go through treatment. I hope you can find some good information here as you move forward toward recovery in your cancer journey: I wish you all the best.

    (I hope it's ok to share this link)

    https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

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  • Richw919
    Richw919 CSN Member Posts: 1 *
    #4

    I am 53 yr old and had NET Tumor in Pancreas in 2020. Had surgery and removed the tail and spleen. Last November they had me do scans and found some in my Liver. I am also on Lanreotide injections every 28 days. They said if the uptake or size gets worse they will have to put me on Lutathera treatment. Like to hear from someone what their expercience has been.

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