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How does Alcohol use affect Liver NET?
Neuroendocrine Tumors (NETs) | Last Active: Aug 28 11:13am | Replies (9)Comment receiving replies
This was very helpful. People keep saying to read up on NETS. There is so much info out there. Can you recommend a few good places to start? Thanks.
Replies to "This was very helpful. People keep saying to read up on NETS. There is so much..."
Hello @lagunagrl
You are asking a good question regarding a good place to find NETs information. It is important that you not read everything that is on the internet, especially if it is an AI post. However, any website from a reputable source is a good starting place to educate yourself.
Mayo Clinic's website is great, also the Carcinoid Cancer Foundation has helpful information as well as videos of webinars, the American Cancer Foundation is also reliable. Any of the major, well-known hospital systems have good information as well as university medical schools that are research oriented.
Another very valuable resource is Mayo Clinic's support group. This is a Zoom meeting on the first Thursday of each month from 5:30 to 7 p.m. There is usually a speaker who will present information about NETs and there will also be a question/answer time when your concerns will be addressed. Watch for the notifications about these monthly meetings.
I hope you find helpful information, @lagunagrl. When I began my journey with NETs in 2003, there was not a lot of information nor support groups like there are now. So, keep reading and posting on Connect. You will learn a lot from the many members who have lived with this cancer for many years.
Hello @lagunagrl,
On Thrusday, September 4, there will be a virtual NETs support group meeting sponsored by Mayo Clinic. This month, one of Mayo Clinic's NET specialists, Dr. Jason Starr will be presenting, and this would be a good place to get some NET information, have questions answered and meet others who also have NETs. You will need to register in advance in order to get the Zoom link. Here is a link to meeting and registration information,
https://connect.mayoclinic.org/comment/1380725/
I hope you can attend.
Connect
If you Google neoendrocrine carcinoid tumors and read the neoendrocrine tumors q and a plus right under is the Mayo clinic info. Also, wherever yours originated as that to a Google search...ie; neoendrocrine carcinoid tumors originating in...... my hubs was small intestine. That will pinpoint some symtoms and treatment options due to it starting in your origin. I know you'll be looking at prognosis as well. Realize this cancer is generally slow growing and with treatment, even at stage 4 it is very much treatable for many years. If you'll look at the newest treatment which is Lutethera, that is what my hubs went through and finished up Dec of 2023 with good results. This site is a good place for questions, and comparisons. It truly does make you feel as if you're not doing this by yourself. Folks here have NETS that originated in many different areas, different stages and some with different treatments. All is good to know. I hope the above will help you as you navigate through all of this. Again good luck to you.