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@hopeful33250

Hello, @tatnick02, and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. I joined Connect when I was facing my third surgery for NETs and it was encouraging for me to learn from others about their NETs experiences.

My first thought would be to encourage your finance to meet with a NET specialist for a second opinion. NET specialists are specially trained and experienced in this rare type of cancer and know many more treatment options than a general oncologist. Some of these NET specialists will often consult with you via a virtual appointment if you do not live nearby. After the initial consultation, the specialist can provide your current oncologist with the best treatment plan.

Mayo Clinic has NET specialists in all three of its locations. If your finance is interested in consulting with a Mayo specialist, here is a link with appointment information, http://mayocl.in/1mtmR63. If for any reason, he cannot obtain an appointment at a Mayo facility, here is a list of NET specialists throughout the country,
--Carcinoid Cancer Foundation, find a doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
As you indicated that the primary source of the NETs has not yet been found, I'm wondering if your finance has had the 68GA Dotatate Scan. This is a good way to find a primary. Here is a link to some information about this specific scan for NETs,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/?commentsorder=newest#chv4-comment-stream-header
I would encourage you and your fiancee to read the first post in this discussion which will help you understand why this scan is most helpful in locating NETs.

Outside of the back pain, how is he feeling? Has he experienced any weight loss?

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Replies to "Hello, @tatnick02, and welcome to the NETs support group on Mayo Connect. I am glad that..."

Thank you for the helpful links! We’d love a second opinion and all the support we can get. I’ve searched the net many times and as just happened across this forum tonight, as we sit in the hospital, now on his 4th admission in a year. We live in KY and he was seen locally at the hospital 3 times before they finally did a biopsy of his hip and found the tumors. Following his diagnosis this Sept (nearly a year later) he was referred to the OSU James Cancer Center in Columbus, OH. He’s had some weight loss (around 30lbs overall) in the last 2 years. The initial MRI was reviewed with recommendations for tissue sample but no one followed up. Second visit they have a diagnosis of Rhabdo for the pain and with history of working out the pain primarily around the SI joint. Last night we returned to the ER with pain radiating all up his spine and stemming throughout his body. The NET specialist at OSU has him on a daily regimen of muscle relaxer, and inflammatory and narcos. As no other treatment has yet started, as you can imagine his body is showing a growing tolerance to this regimen and it takes pain relievers at the hospital (i.e. Delaudid) for 24+ hours to totally squash the flare up. I am hopeful about the possibility of virtual consults/appointments for other opinions. We travel but currently he is still working full time and so distance travel takes some advance planning and budgeting. He has zero other symptoms besides the occasional severe back pain flares and the start of weight loss this year which we actually believe to be more lack of conditioning since he doesn’t work out at all anymore at the recommendation of a local oncologist. I feel he’d benefit from PT and most certainly the radiation. With the prognosis blanket statement of “slow moving” there seems to be so little initiate to start treating more aggressively. As a female, aka problem solver and a need for immediate gratification lol, this is so hard for me to understand aside from the realities I mentioned before like not exposing him to meds or chemo before absolutely needed as these too can cause issues and worsen the problem at times.