An Introduction from One Being Pushed Over the Fence

[HoleyBaymax]

Hello, all. I posted the below on another community, as apparently I've decided to build an online presence ahead of this experience. Apologies for the length. I think there are many common denizens in both places, but there are probably unique members as well, and the more the merrier. Maybe this will help someone in the future.

Like many here, I’ve battled obesity my entire life, from Husky-sized jeans to a HW of 453 in 2017. Through a counselor, I connected with a weight loss PCP, and by working with him and a NUT have lost 130 lbs in 2 years. I was content with this method and pace, but circumstances had other plans.

This past summer, I presented with symptoms consistent with gallstones. After an external ultrasound showed nothing, PCP ordered an EUS. Surprise, pancreatic neuroendocrine tumor (PNET), on my birthday, no less! Consults with surgical and medical oncologists ensued, and while I have the kind of cancer that killed Steve Jobs, as long as I don’t treat it with carrot juice and happy thoughts, it probably won’t kill me tomorrow. That’s good, since as a husband and father, I want to stick around.

The (hopefully not) killer, though, is that my cancer doesn’t show up on bloodwork or CT, and only marginally on PET. Med and surg onc concur that the best treatment plan is to cut it out.

What has this to do with WLS, you ask?

As I wrote above, I was happy to keep losing my 5 lbs/month, see where I landed, and make further lifestyle changes when I plateaued. However, the cancer I have, according to World-Class Oncologists ™, can flip a switch any time and go from not-a-problem to Patrick Swayze-level, and nobody understands why or how.

WLS enters the picture as a catalyst to accelerate treatment. The thinking is that VSG (my recommended procedure, based on my initial consult with Dr. Hussain and the bariatric team at UC) will drastically en-rapidate my weight loss, possibly helping me drop as much as 70-90% of my excess body weight in the next 9-12 months. In that way, the surg onc should be able to operate on a healthier patient with fewer complications, especially if, as seems likely, he has to pivot to what would be, at worst, a laparoscopic Whipple procedure.

Being a lesser man at the time of that surgery should make the whole process less risky overall, but that’s just one of the questions for the surgical team that I’ll begin to firm up once I start the formal pre-op process. I’ve been assessed as a near-ideal bariatric candidate by psych based on my previous work, and by NUT based on the low-carb high-protein changes we’ve institutionalized in our family lifestyle. We even gave the NUT two recipes she said she’d share with her patients! I have concerns in both areas, though, that I’m working to get a handle on—psych, given my history with depression, and nutrition, since some of the strategies I’ve used to be successful up to now might not be compatible with VSG.

Anyway, thanks for letting me introduce myself and overshare. If you have any relevant thoughts or experience on the above, especially if you have had, or know anyone who has had, a Whipple procedure after a VSG, I’d REALLY like to hear from you, since there’s not much in the open literature on it. I’ll maybe post more details, questions, etc., in the relevant sub-forums if I can’t find something through search, but again, thanks for letting me vent and share.

[HudsonBob]

I'm curious what kind of symptoms to have concerning the pancreatic neuroendocrine tumor. I don't have a gall bladder but I get pains similar to a gall bladder attack. It has me concerned to mention this to my PCP.

[AnnieG]

HoleyBayMax, first welcome to the forum; second, prayers for you to be around for your family for a long time.
Although I have had sever types of cancer, along with multiple chronic health issues, I have not had to deal with pancreatic cancer. I know the Whipple procedure is often quite successful...but how it relates to VGS I am unfortunately clueless.

I do know if you trust your oncologist, that's a huge help. If I have a "hero" place of choice, it is MD Anderson down in TX. But it depends on where you are.

I do know that post VGS I am as close to healthy again as I could be; this is the first year in the past 12 without major surgery or treatments for something potentially life threatening.

Please post what you find out, and again, this is a wonderfully supportive group.
Annie

[KiwiGal]

Hi and welcome.

Gosh that's a lot for you to contend with but it seems that you are researching and dealing with it all as best you can.
I can't offer anything constructive other than support from afar.

As we all know the closer to a "healthy" weight we are the easier and, hopefully, less risky any surgery is.

Sending you good wishes.

[HoleyBaymax]

The symptoms I had were right upper quadrant pain, ranging from 4-8 on the scale; nausea, ranging from annoying to vomitingly projectilastic; extremely irregular bowel movements; and an appetite more apathetic than a Manhattan cat, such that I was down to around 800 kcal per day. Dropped 25 lbs in 3 weeks on the BRAT diet.

My PCP ordered the endoscopic ultrasound (EUS) based on my BMI, previous external ultrasounds that were either negative or inconclusive, and a HIDA scan that diagnosed me as $900 poorer after coinsurance. This gastroenterologist is apparently whizz-bang at the procedure, and thought to do a fine-needle aspiration (FNA) on what amounted to a hunch. Sherlock Holmes and The Case of the 8 mm Tumor.

From my research, and my interaction with the gastrointestinal community, I’ve learned there’s a fair bit of the dark arts to practicing in the Black Hole, and I was damned lucky my PCP referred me to the guy I saw. Lucky, and blessed, difficult as it might be for me to accept.

Based on my research, most PNETs are asymptomatic. I got lucky that I presented with something that looked like gallstones. My primary and secondary surgical oncology consults both said that, even if they got in and had to pivot to a Whipple (which usually involves taking the gallbladder as well), they couldn’t say if it would resolve my intermittent acute attacks.

My best advice (totally unsolicited, from a stranger on the internet):

1. Be your own advocate. If you think something’s there, get it checked out to your level of satisfaction. Get a second opinion if it’s within your means.

2. Be an informed patient. Presenting with RUQ pain to a gastroenterologist can be like presenting with a headache to a neurologist, so do your homework. Have your own history down pat, and try to have a handle on your own conditions, comorbidities, contributing factors, test results, etc.

3. On the flip side, don’t book an appointment with Dr. Google. He may or may not nail your diagnosis, but the bastard will for sure stoke your oh-s*it machine like a ton of bituminous coal in a boiler. Nobody needs that.

Mine seems to be a curveball case, maybe 1 in about 200,000 or so. I hope yours is just gas, you can take some GasX, and get back to hitting insane quantities of protein and awesomeness. If not, let me know and I’ll do what I can to share what I learn.

@AnnieG is right about MD Anderson. They are legit. I just happened to luck out that UC has a top-3 neuroendocrine outfit, but if I hadn’t received good vibes, Anderson and Mayo were next on my list.

Good luck and Godspeed. It’s probably just stress from living in New England.

[HoleyBaymax]

I'm curious what kind of symptoms to have concerning the pancreatic neuroendocrine tumor. I don't have a gall bladder but I get pains similar to a gall bladder attack. It has me concerned to mention this to my PCP.

The symptoms I had were right upper quadrant pain, ranging from 4-8 on the scale; nausea, ranging from annoying to vomitingly projectilastic; extremely irregular bowel movements; and an appetite more apathetic than a Manhattan cat, such that I was down to around 800 kcal per day. Dropped 25 lbs in 3 weeks on the BRAT diet.

My PCP ordered the endoscopic ultrasound (EUS) based on my BMI, previous external ultrasounds that were either negative or inconclusive, and a HIDA scan that diagnosed me as $900 poorer after coinsurance. This gastroenterologist is apparently whizz-bang at the procedure, and thought to do a fine-needle aspiration (FNA) on what amounted to a hunch. Sherlock Holmes and The Case of the 8 mm Tumor.

From my research, and my interaction with the gastrointestinal community, I’ve learned there’s a fair bit of the dark arts to practicing in the Black Hole, and I was damned lucky my PCP referred me to the guy I saw. Lucky, and blessed, difficult as it might be for me to accept.

Based on my research, most PNETs are asymptomatic. I got lucky that I presented with something that looked like gallstones. My primary and secondary surgical oncology consults both said that, even if they got in and had to pivot to a Whipple (which usually involves taking the gallbladder as well), they couldn’t say if it would resolve my intermittent acute attacks.

My best advice (totally unsolicited, from a stranger on the internet):

1. Be your own advocate. If you think something’s there, get it checked out to your level of satisfaction. Get a second opinion if it’s within your means.

2. Be an informed patient. Presenting with RUQ pain to a gastroenterologist can be like presenting with a headache to a neurologist, so do your homework. Have your own history down pat, and try to have a handle on your own conditions, comorbidities, contributing factors, test results, etc.

3. On the flip side, don’t book an appointment with Dr. Google. He may or may not nail your diagnosis, but the bastard will for sure stoke your oh-s*it machine like a ton of bituminous coal in a boiler. Nobody needs that.

Mine seems to be a curveball case, maybe 1 in about 200,000 or so. I hope yours is just gas, you can take some GasX, and get back to hitting insane quantities of protein and awesomeness. If not, let me know and I’ll do what I can to share what I learn.

@AnnieG is right about MD Anderson. They are legit. I just happened to luck out that UC has a top-3 neuroendocrine outfit, but if I hadn’t received good vibes, Anderson and Mayo were next on my list.

Good luck and Godspeed. It’s probably just stress from living in New England.

[HudsonBob]

Thanks for all the very detailed response. Mine is more like a dull main in the upper quadrant with no other symptoms. I've actually have had this pain before and had a CT scan which found nothing wrong other than fat around my liver.

[Ann2]

Good golly, Miss Molly! That's a lot you've got going on. But you sound sharp as a whip and as informed as it's possible for someone with your unusual combination of simultaneous situations.

I have no insights to offer. Just support. And very best wishes for you and yours.

Oh ... and a big loud WELCOME to the board.

Ann

[Christie13]

Welcome. I don't have the answers for you but I do want to welcome you and wish you success on your unique journey. Hopefully you are able to lose weight and kick cancers ass.