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Just diagnosed with PNET: Any thoughts on watch & wait approach?

Neuroendocrine Tumors (NETs) | Last Active: May 13, 2023 | Replies (10)
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@vtn

You have been through so much. You must be a strong person. I really appreciate that you shared your story.
So I guess a Whipple is in my future. I already had my gallbladder removed 15 years ago so one less part to remove. This watch and wait policy scares me because I feel it lets the PNET have more time to metastasize. Do you know anyone who only had a solitary PNET that never metastasized?
I read that removal of the PNET is the only cure. I am new to this so don’t know very much. Do you know anyone who has been cured?

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Replies to "You have been through so much. You must be a strong person. I really appreciate that..."
EM | @elm60 | May 13, 2023

Hi vtn
There are a lot of people that have had no additional growth or metastatic activity post surgery, but some do. So surveillance is key. At my 3 opinion the specialist said that “once it’s confirmed, the horse is already out of the barn.”However, it may take years to develop. I pray and am a positive person. I keep up to date on as much information I can to see what new drugs/procedures are coming out! I do this through some of the sites I mentioned. I agree with Kim 1965 that we are not doctors and a multidisciplinary team is best.
Mayo also has a NET Support Group meeting every 1st Thursday of the month and you can be placed on on email reminder list by emailing our coordinator Loriell at the below email.
Grossling.loriell@mayo.edu

Also CCF, Carcinoid Cancer Foundation has Facebook Live events ever Thursday, Luncheon with the Experts, NCAN has weekly support groups and Dr Liu has a monthly Facebook Live as well. Being your best advocate and learning as much as you can will help your confidence going forward! 🙏✝️💜

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