Anyone have a neuroendocrine tumor (NET) in the spine?

Hello @joannekeith and welcome to the NETs support group on Mayo Connect. It sounds like you and your husband are using many treatment modalities to fight this problem. Is he using the acupuncture to help with pain?

If you are comfortable sharing more, how long was your husband diagnosed with NETs? Is the current chemo the only treatment he has had since his diagnosis?

Today is the day finally for my gallium dotatate scan. See the doc tomorrow for results.

Glad to hear that you will having the scan today, @rrlbees. I look forward to hearing from you with an update.

Well my oncologist visit isn’t until tomorrow but I got the results because the radiologist put the report on the patient portal. Everything was the same as I’ve known with the exception of the bones. From CT last month I knew about C7 and T9 but this scan found others. Ugh.

That screenshot is awful small. Here’s larger print. Anyone got any suggestions for treatment of this many areas of bone lesions?

MUSCULOSKELETAL: Multifocal bony metastases with representative
lesions as follows:
Anterior right acetabulum, max SUV 20
Left iliac wing, max SUV 16.2
T9 vertebral body, max SUV 27.9
C7 vertebral body, max SUV 30.9
Left eighth rib, max SUV 11.6
Proximal right humerus, max SUV 10.7.

I can imagine how disappointed you must be, @rrlbees. Since you will be seeing your oncologist tomorrow, perhaps you will get some new information on possible treatment options for this situation.

I'm sure you weren't expecting this result. Have you had increased pain?

Yes I’ll see my oncologist tomorrow and see what he’s gonna recommend but I’m also having everything sent to my doctor at Memorial Sloan Kettering who I rely on for second opinions and I’ll have a telemedicine appointment with her also. I have had some pain but nothing significant.

That sounds like an excellent plan, @rrlbees. Conferring with the doctor at Sloan Kettering should give you another perspective on what type of treatment plan is best for you!

I look forward to getting your updates as you continue on this NET journey with the rest of us!

Well my meeting with my oncologist went very well in my opinion. Probably the longest I’ve ever had with him. About 1 hour. We discussed everything under the sun and my gallium scan and results.

I was most happy with him thinking it was a great idea of engaging Dr Raj at Sloan Kettering. Said he was going to recommend it. He’s going to take care of getting everything to her and he’s going to talk to her himself. I’m setting up an appointment myself. He mainly wants to talk to her about treatment because he said there’s a few options for treatment of the bone Mets.

He also still wants to do genome testing via a biopsy to get some insight into my specific cancer cells which can help pinpoint the best treatment. We leave tomorrow for a week in Maine so he’s going to try and set up the biopsy for the week after. Of the 6 bone Mets locations he said the biopsy will be easiest done in the rib.

While I went in somewhat anxious he also did a good job at reducing mine and my wife’s anxiety. So that helped.

More later.

This all sounds like what you need now, @rrlbees. I'm also glad to hear that the doctor was able to put you and your wife at ease and was amenable to talking with the Sloan Kettering doctor and getting your information to Sloan Kettering.

I hope you and your wife have a lovely time in Maine. It should be a nice break for you both. I look forward to hearing from you again with any updates, questions or concerns.