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Just diagnosed with pancreatic NET stage 1
Neuroendocrine Tumors (NETs) | Last Active: May 14 8:56pm | Replies (152)Comment receiving replies
As I’m reading the previous posts, I’m learning that I have yet so much to learn about this. I’m doing will with it emotionally. The surgeon wants to do a PET scan before talking course of treatment.
1. I have other issues and wondering if it’s all tied.
2. What kind of treatments are usually presented?
3. Do you have surgeon recommendation in the DC, Maryland and Virginia area?
Replies to "As I’m reading the previous posts, I’m learning that I have yet so much to learn..."
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Hello @bellom
When you say, "I’m learning that I have yet so much to learn about this" you are expressing what most of us feel after a NET diagnosis. This diagnosis puts us all in a place of learning and connecting with others. I'm so glad that you found this forum. This is a great place to learn from the experience of others.
Some of your questions can only be answered by your medical team. Regarding finding a good surgeon in your area, I would highly recommend that you be willing to find a NET specialist, whether or not that specialist is local. Be open to considering a virtual appointment if you cannot find a NET specialist conveniently located nearby.
Mayo Clinic has three locations and there are NET specialists at each facility. If you are interested in a consultation, here is information for obtaining an appointment, http://mayocl.in/1mtmR63.
If an appointment at Mayo is not an option for you, here are names of NET specialists world-wide with the U.S. doctors listed by state,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Finding a NET specialist, rather than a general oncologist, is very important. NETs are a rare form of cancer, and they don't behave like typical cancers. Therefore, in order to get the best treatment, you need to have at least one consultation with a specialist. Often that specialist is willing to provide good direction for your team that is closer to home.
I am a 20-year survivor of NETs, having had my first surgery in 2003 and the last surgery in 2016. I know from experience how important a specialist can be.
What are greatest concerns right now? Are you maintaing your weight?