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@hopeful33250

Hello @sylvian and welcome to the NETs discussion on Mayo Clinic Connect. As you can see, I moved your post to another discussion group where members have lung NETs along with metastasis to other organs in the body. I'm glad that you found this forum. It is certainly helpful to be able to meet others who will share their experiences about their diagnosis and treatment.

I am a 20-year survivor of NETs. Since 2003, I have had three surgeries for NETs in the upper digestive tract, my last surgery was in 2016. I have only required surgery, with no other treatment needed.

I can understand you wanting to be sure that you are getting the best treatment possible. You do not mention if your current oncologist is a NET specialist. NET specialists are trained in the latest treatment modalities for this rare cancer. Here is a listing of NET specialists. If you do not live near one of these doctors, you might consider having a virtual appointment in order to get a second opinion.

--Carcinoid Cancer Foundation: Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I'm glad to hear that you are going to the gym. Physical activity is good for anxiety, and it is important to keep anxiety at a manageable level. It is great that you are not experiencing any significant symptoms from the cancer or the treatment.

I would encourage you to read the posts of other members in this discussion group and feel free to ask questions by hitting the "Reply or Comment" button. This way you will get to know others and learn from their experiences.

I look forward to hearing from you. Will you continue to share your concerns, questions and also updates on how you are doing?

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Replies to "Hello @sylvian and welcome to the NETs discussion on Mayo Clinic Connect. As you can see,..."

Thank you for your information, and moving my post. I will continue to share how I am doing and any updates regarding treatment. Today I had. CT scan scheduled, with contrast for my pancreas and spleen, they tried to get the IV in 5 times and we’re unsuccessful, 3 techs tried, so I could not get the scan today, maybe another time. Have a great day,
Regards,
Dak10

Thank you for moving my post ! And for sure I will continue to share! Because of your reply I now feel I have more questions that I can ask my Oncologist ! The web site you suggested had the nearest NETs specialist in another province.
I have just finished my ninth cycle and will be talking to my Oncologist on the 27th.
One thing I forget to mention in my original post is last 5H11A result was at 189 , up from the last month 144. Chromagranin 39 , down from 41 last month.