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Did I act too hastily about treatment location?

Author RandiJoy
Forums Member
#1 | Posted: 19 Oct 2011 23:28
Hello. My dad was just diagnosed with NETs in his stomach, intestines & lymphnodes. I've learned so much in the last month & a half, I'm SURE I know more than the doctor he's seeing who's the head of oncology at Univerisity Seidmans Cancer Center in Cleveland, Ohio. It's very upsetting :( He just received his first Octreotride shot yesterday (30mg). None of the tumors are inoperable but they've said there are just too many (& some were described as free floating salt and pepper ize in his stomach), so they won't. In fact, the doctor said if they go to his liver or pancreas, they still wouldn't operate because there's so many. Also, he has a tumor under his clavical bone that didn't light up in the scan and they're not even going to remove that! I read that up to 30% of NET patients present with other types of cancers. My question is, in my haste, all I knew is I wanted him to get the best care and I've learned a NET patient needs a team of specialists in this specific field. Someone told me Dr. Woltering and his team, at The Neuroendocrine Program at Ochsner Medical Center Kenner are "the dream team". My dad signed a release form and now all of his records are in the process of going there but I never really did any specific research on the different carcinoid clinics themselves! I'm praying this clinic is as good as the others in the USA and hopefully the top rated but I can't find anything on the internet to compare the clinics here. Did I jump too fast??
Author Jenny
Forums Member
#2 | Posted: 20 Oct 2011 00:06

The Carcnoid Cancer Foundation lists the clinic at Ochsner Medical Centre as being expert in NETs. The Foundation website looks like a very good site for you to be looking at if you haven't already done so as it is more specific to the US rather than here in the UK. We of course welcome all NET sufferers and family members from around the world, but systems may be different.

You have certainly done the correct thing in getting your Dad the best care that you can as this cancer does need specialist care. I hope your Dad will start to feel better once the injections have kicked in - it can take 2 or 3 before they take full effect. I think treatments around the world for NETs is pretty similar - just getting to the right team can be the difficult bit. It is my husband who has NETs in the small bowel (ileum) with spread to the liver and he is unable to have surgery due to other long term medical problems. However, he was diagnosed over 2 years ago and as far as we know at the moment is stable and keeping fairly well with just the monthly Sandostatic (Octreotide) LAR 20mg injection. I think there are many patients who have inoperable NETs so your Dad is not alone.

Best wishes to you and your family and keep in touch if you wish to.

Regards to all
Jenny (Dorset UK)
Author Annie
Forums Member
#3 | Posted: 20 Oct 2011 09:04 | Edited by: Annie
Hi Randy,

When I was first diagnosed I contacted Doctor Woltering with questions about my disease. He gave me his mobile number and said call any time. I said I wouldn't dare as I live in Australia and might wake him at 4am by mistake, but he said that wouldn't be a problem. I am so grateful for the time he took to help me in those early days.

Doctor Woltering is held in very high regard by the ACOR Carcinoid members. In the two years I've been on the ACOR Carcinoid list I have heard many patients say that Kenner will perform debulking surgery when other centres have sent the patient away. Doctor Woltering answers patients' questions on the ACOR list and you can join free here

Best of luck to your father, Annie.
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