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NET symptoms despite follow-up lab work ok
Has anyone experienced NET symptoms ie diarrhea, morning vomiting, nausea, headaches while lab work is all within normal range? I had net in ileum diagnosed 8/2021 which was removed by endoscopy. My lab work was fine and CT scan fine a week prior to finding NET. Every 6 mos my oncologist says "your lab work is fine" to which I reply "I wish I felt as good as my lab results" and his response is "see you in 6 mos." I had my one year endoscopy in 2022, which was fine and this year's is scheduled in Sept. I know I am lucky when I read what all of you are suffering thru. My company is allowing me to work from home because I am too sick to commute, I need immediate access to bathroom. I am not complaining, but I am curious as to whether or not anyone is experiencing the same thing? I take anti anxiety medicine because my anxiety has GI side effects, my primary doctor just increased the dosage. I've seen an assortment of doctors to determine if anything other than NET is going on, my nutrition is very good but symptoms are getting worse.
I keep all of you in my prayers, God bless.
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@terlato, Sorry to hear that you're having these frustrations in addition to dealing with the disease.
I went to Mayo in Phoenix in 2021 for PRRT and was initially told something along the same lines you heard. However, Medicare and Tricare for Life paid everything. On Mayo's website under "Frequently asked questions", it's very clear that all their programs are Medicare approved. They recently sent out a letter concerning some Advantage plans are not approved.
My experience could not have been better, so I would encourage you to talk to someone else at whatever location you would want to go to. And look this information up on their website so you can use that should you need to.
Good luck.
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2 ReactionsCorrect. Mayo doesn’t take any Medicare Advantage plans, however, they take original Medicare and Medicare supplement plans. All of my husband’s care has been covered by Medicare
@terlato I know it's been a while, but I am considering the Prenuvo scan for issues in my lower back and buttocks. I fell while skiing ten years ago and have still not resolved the ongoing pain. Did you get the whole-body scan or just the torso? Hope your issues have been resolved.
@heisenberg34 so sorry to hear you have no answers. I did the whole body scan. But, as I remember it can not pick up problems with nerves.
It sounds like you might have a pinched nerve. I have a neurological condition and sometimes I get lower back pain through my buttocks. But, my mri showed my disc was probably pinching the nerves. So I would go to PT and chiropractor and it has helped. Good luck and I hope you find the answer.
The Prenuvo is expensive and you still might not get the answer.
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1 ReactionThanks for your response. Greatly appreciated. The pain in my buttocks feels like I am sitting on two hard rocks. I looked into the Prenuvo scans. The expense seems to be the #1 complaint. Of course, one could argue that if you don't like it just don't get it done.
@heisenberg34 You should try everything before you consider Prenuvo. I find that a TENS unit, a heating pad and Motrin relieves the pain. You might have to do it every day, but worth it. Also, if you can go for massages. There are os many nerves and muscles can be in very tight pressing on nerves. Cheaper than Prenuvo. I would try this for at least a month to see if you get relieve. Honestly an MRI will see the same as Prenuvo for your back. Please try these things first before you shell out almost $3000. My best you.
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2 Reactions@heisenberg34 Also I just realized you were a cyclist and believe me the seat can do lots of damage to buttocks and lower back tail bone. That's why I think you need hands on therapy. I would also suggest to see an orthopedic surgeon. You might have a slight fracture of the tailbone and that can cause horrible pain. Just look into everything possible if you doctors haven't and if they give you the answer there is nothing wrong, be your own advocate and find another doctor until one listens to you and checks out what you are telling them. Good luck.
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2 Reactions@terlato I’ve been down just about every fork in the road. Massage, PT,dry needling, spinal fusion, spinal cord stimulator, chiro, at last count, seventeen different docs. Pain pump implanted in 2023. Nothing has really helped except drugs and the SCS for about two and a half years. I keep hoping that getting increases in my pain pump will eventually help. Again, thanks.
@terlato Let’s add steroid injections and nerve ablutions. And possibly a bunch of other stuff I’ve forgotten. I feel like the man whom medicine has forgotten. Since we moved to another state, I haven’t been able to find an empathetic pain doctor who takes the time to really look into my pain.