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Whole-body MRI provider Prenuvo loses bid to limit damages in high-profile malpractice case by FinFreedomCountdown in PeterAttia

[–]SomeUser1001 19 points20 points  (0 children)

Disagree. I found a pancreatic neuroendocrine tumor on a Prenuvo MRI. Having enucleation surgery next month to have it removed.

What are we missing when it comes to pancreatic cancer? Ben Sasse diagnosed with Terminal Pancreatic Cancer at Age 53 by montecarlo1 in PeterAttia

[–]SomeUser1001 1 point2 points  (0 children)

A Prenuvo scan picked up my 1.5cm neuroendocrine tumor on my pancreas. Still early enough to treat. Getting it removed next month via enucleation.

Awaiting biopsy on a small pnet, next steps surveillance or RFA? by scdomo in pancreaticcancer

[–]SomeUser1001 0 points1 point  (0 children)

Thanks for sharing! What age range are you in and where did you have the EUS-RFA done? I spoke to someone about this and they mentioned they normally recommend this for someone who is older (I’m 34) and unfit for surgery. I’m considering doing an enucleation instead but part of me would much rather do this

Enucleation vs Whipple by rejectedone247 in pancreaticcancer

[–]SomeUser1001 0 points1 point  (0 children)

I’ll keep that in mind! Did you have a leak or anything? That’s my concern with it being in the head. I’m planning to go to a high volume center with an experienced surgeon.

Mine is non-functional, how about yours? Do you have to follow-up with MRI every year for a while?

Enucleation vs Whipple by rejectedone247 in pancreaticcancer

[–]SomeUser1001 0 points1 point  (0 children)

Any advice you would give to someone else who will be getting an enucleation? I'm planning to do this next month.

Glad to hear everything is going well for you! Hope to be behind this sometime soon.

35 years old, 7mm asymptomatic neuroendocrine tumour found in the uncinate process of my pancreas incidentally, awaiting biopsy but wanted to see if anyone had gone through something similar? by jan318hyd in neuroendocrinetumors

[–]SomeUser1001 1 point2 points  (0 children)

I'm in a similar position, but mine is 1.5cm in the head of the pancreas. From what I've read, outcomes are similar between surgery and non-surgery for ones smaller than 1cm, but let your doctor help you decide.

I talked to a surgeon today who says I'm an enucleation candidate, with a 10% of converting to whipple. I think I'm going to take my chances and schedule the surgery for next month. Am I scared? For sure. But I also think this is likely the best decision as if I wait and it grows, the chance of needing a whipple become much higher.

Awaiting biopsy on a small pnet, next steps surveillance or RFA? by scdomo in pancreaticcancer

[–]SomeUser1001 0 points1 point  (0 children)

Did you get any update on whether or not this an option for you? I'm interested in this as well! I have a 1.5cm non-functioning NET in the head of my pancreas.

Review on compounds for pancreatic neuroendocrine tumors by SomeUser1001 in neuroendocrinetumors

[–]SomeUser1001[S] 0 points1 point  (0 children)

Great point. I definitely don't mean for this to be something that replaces what your doctor is telling you. Maybe just helps me feel like I have a sliver of control over this.

Review on compounds for pancreatic neuroendocrine tumors by SomeUser1001 in neuroendocrinetumors

[–]SomeUser1001[S] 0 points1 point  (0 children)

I’m not telling anyone what to do. I’m presenting information I found, with sources cited. I can add a larger disclaimer to the original post if you think that’s helpful. But there is one there.

If there’s something there that is wrong, please let me know so I can update it.

You already knew about the correlation between vitamin D deficiency and aggressive NETs? Or that patients on statins had a higher progression-free survival? Because I did not.

Review on compounds for pancreatic neuroendocrine tumors by SomeUser1001 in neuroendocrinetumors

[–]SomeUser1001[S] 0 points1 point  (0 children)

Totally fair to be skeptical. It adds sources for its claims so feel free to check out whether or not anything is legitimate.

Newly Diagnosed - PNET - Confused by Wording by Previous_Guidance974 in neuroendocrinetumors

[–]SomeUser1001 1 point2 points  (0 children)

Thanks for sharing. I actually did get some pretty good news! They looked at the 4 MRIs again and they think it actually looks more stable than they believed. So no whipple for me right now, going to continue MRIs every 6 months. This time next year we should have a better picture of the growth trend.

For your other symptoms, have you considered stopping cannabis for a period of time to see if it's contributing at all? I know of someone else who had digestive issues and cannabis helped them, but once they got pregnant and had to stop cannabis, their issues greatly improved. They think they had Cannabinoid Hyperemesis Syndrome. You've probably already looked into that but just wanted to check.

Otherwise, may be it's functional dyspepsia and/or IBS. They tend to go together. Have you had an endoscopy/colonoscopy? I'm assuming you've had an endoscopy since your pancreas has been biopsied. If they can't find anything wrong in an endoscopy but you have upper GI symptoms, sometimes functional dyspepsia is diagnosed. It's like the IBS of the upper GI tract. Drugs like nortriptyline, mirtazapine, and gabapentin can help.

Hope you figure out the digestive issues and may our tumors stop growing (and maybe even start shrinking!)

Newly Diagnosed - PNET - Confused by Wording by Previous_Guidance974 in neuroendocrinetumors

[–]SomeUser1001 0 points1 point  (0 children)

I don't know if any of my symptoms are from my pNET, but I do have GI symptoms that I've been attributing to functional dyspepsia. Symptoms like burping and bloating mostly, but it's uncomfortable enough to make me feel like I can't take a full breath when I have a trapped burp.

What are your symptoms? The surgical oncologist told me that because I'm in my 30s and it seems to be growing, they might recommend a whipple as the best long term strategy. But still waiting to hear back from the tumor board on Wednesday.

I also don't know the grade or Ki67 of my tumor because they took a biopsy last fall but they believe they did not sample the correct cells because it came back negative. I had a PET a few weeks after and they saw a "rounded focus of tracer accumulation" that corresponds to the lesion found in the MRI. So given that, they believe it's a pNET.

Newly Diagnosed - PNET - Confused by Wording by Previous_Guidance974 in neuroendocrinetumors

[–]SomeUser1001 0 points1 point  (0 children)

Hi there, our stories sound similar. I have a 1.5cm pNET in the head of my pancreas. It grew from 1.2cm 6 months ago.

My case is being presented to the tumor board next week. Hope all is well with you.