ncan support groups – wisconsin chapter
Tom and his wife Lynn live in Neenah, WI, just south or Green Bay. Tom was ‘introduced’ to neuroendocrine tumors in April 2015 when his wife Lynn was scanned for breast discomfort (which turned out to be nothing) and a spot on the liver was noticed and biopsied. She had been reporting symptoms for 5+ years – all diagnosed as menopause, IBS, etc. Very typical. Her site source is her ileum which had metastasized to her liver. She’s had two debulking surgeries reesulting in ‘no evidence of disease’ for a short period before developing into 50 liver tumors. She is currently on Octreotide LAR and Afinitor.
In April 2015, Tom immediately became an almost full time NETs researcher and within 60 days from diagnosis, he and Lynn attended their first NCAN meeting in Minneapolis where they met Dr. Woltering, Dr. O’Dorisio, Dr. Halfdanarson among others. At this point Lynn began seeing Dr. Halfdanarson at Mayo Clinic, a four hour drive. Tom educated himself on how to deal with insurance denials and attended multiple grievance hearings with two insurance companies. With one company, after a nine month process he succeeded in having the insurer cover Mayo on an in-network basis after filing for outside binding arbitration. Since then, he has helped quite a few other NETs patients with their insurance struggles.
Mr. Tom Wilson
WISCONSIN SUPPORT GROUP LEADER
WHERE WE MEET
To Be Determined
Will most likely rotate to the following cities:
Wauwatosa, WI (near Milwaukee), Madison and Appleton, WI.
(check email for occasional venue changes)
WHEN WE MEET
This NCAN chapter support group meets on a TBD basis.
ABOUT OUR GROUP
NCAN Chapter Support Group meetings are built on the concept of patients helping patients.
This group has grown from less than 12 in 2017 to nearly 90 at the end of 2018!
Our meetings will be about getting to know people who understand exactly what you’re going through, and about getting you the most up-to-date information on NET testing, treatment options, local medical resources within the State.
As we know, there are no NET specialists in the State of Wisconsin, but there are excellent clinics and doctors who currently work with specialists from other clinics. We will also share lifestyle tips, dealing with insurance issues and denials, preparing for and recovering from surgery, etc.
We hope you decide to JOIN US at an upcoming meeting…we look so forward to meeting you!