I Had a Rare Tumor Removed | Neuroendocrine Tumor Story
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- เผยแพร่เมื่อ 15 พ.ย. 2021
- In January 2021 I found out that I had a Rectal Neuroendocrine Tumor. Watch this video to learn about these rare tumors and my story.
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Hi guys!! Thanks for watching, have you had a similar experience? Tell me how you found out ⬇🏥
I had an NET. caused massive stomach pain..age 40. Apparently was growing for up to 7 years as they are slow growing. Mine was a grade 1, surgery fixed me via a right hemicolectomy and so far, 5 years later, so good.
Thank you for sharing. I'm so glad to hear you are well!
Make sure you get the PET with Dotate atleast once every two years. If your insurance company denies it. Then fake your symptoms. My NET (Carcinoid) returned after 10 years. It has probably been there for 5 years. For 4 years straight my old insurance company denied that test and told me to get a CT scan instead which is useless for Carcinoid. NewbInsurance company Test was approved and sure enough its back.. Basically this tumor has had 4 years longer than it should have to possibly metastasize somewhere else. It doesn't appear that it did at this time atleast its not detectable. Getting surgery in about a month gallbladder has to come out as well. My worries aren't the next 2 years but 5/10 years from now. Just be careful with this and don't let your insurance company deny which is a Vital test
Steve Job’s pancreas cancer was neuroendocrine also but he refused tx in lieu of alternative tx. They are very rare but have a much better outcome. I’m so glad to hear you are ok and it was neuro! I love you lil pupated. I’m a king time chi Mom. Well, keep up with you MD appts, oncology spots. I’m an SLE survivor and metastatic cancer survivor (10 years cancer free from tonsil cancer, surgeries, chemo & radiation). Sux, I know but you get back to living at some point. Stay well, babe😊.
I was diagnosed endocrine pancreatic cancer in 2007 . Distal op. In Mar.2008. It had spread to my liver and ascending colon. Now too many tumors to count in my colon and thyroid. 10 in my Anusara. One in each lobe of my lungs. 16 years with it and am doing good!
@@donnathomas3732 I have small intestine neuroendocrine with Mets to liver, pancreas, bones, parotid gland, breast and most recently nasal cavity. What treatments have you had and are doing now?
Neuroendocrine tumors are very tricky. I too am a net patient diagnosed over 2 years now. It started in my pancreas then spread to liver. I had no real symptoms. Thank God he opened doors for me. Definitely see a net Specialist- I’m at MSK- NYC. started on Octrotide injections which I still do monthly. Then did PRRT and it worked great. It’s all about knowing your tumor and controlling this disease. My understanding is it never goes away. There is great progress in treatments and technology. Radionuclides! So I press on.
This has been extremely helpful! Thank you for sharing your story. Will you be at an increased risk for developing other NETS since you had one?
I just had my neuroendocrine tumor removed in my stomach. They found it during an endoscopy
Wow, great they found it. Thanks for sharing :) Hope you are doing well!
Sending 🙏🏿
Bravo for your brave share, thank you 🫶
Had the same thing, you should still see a net specialist. Eventually they will reoccur
Thanks for the advice! I’ll definitely do that
@@irascrohniediariesit's not 100% that they will recur, but you would benefit from a specialist
That’s not true. There are a wide variety of neuroendocrine neoplasms. Most are non-functional and super slow growing and removal is curative. So slow that many times they aren’t discovered until autopsy. If they’ve spread then yes but not ALL will recur. Always good to stay vigilant.
The functional (hormone-secreting) ones absolutely suck as do the very high grade neuroendocrine carcinomas - the worst ones.
@@sheenponte1470 Agreed. I hate when people say eventually they will recur. That is NOT what the best studies we have say. I feel like it unnecessarily scares people
@@adinahwithkadenwell I had the same outlook as you did.
Until 2 weeks ago
-had severe GI bleed 10 years ago. NET hit a Blood Vessel. Had several small NETS removed. Thought thag was it.
Scan in 2016 was clear
My Oncologist has been ordering a PET CT with Dotate for the last 5 years. 4 years in a row my insurance carrier denied the test. Said to get CT s with Contrast instead I did (They are useless for NETs btw) **Maybe I should have faled symptoms looking back
New Insuramce carrier. Test approved and sure enough I have another Carcinoid.
It's probably been growing for about 5 years
-Surgery upcoming
-My Oncologist had told me if the test was clear I would no longer have to follow up. Now I will be seeing him for the next 10 years
-Get the tests needed. CT with Dotate is the most accurate. Hopefully they are clear
Positivity is one thing but Complacency is something else
Never take your health for granted
Please see an oncologist. I have neuroendocrine tumors that were first discovered in my pancreas, they spread to my liver and L5 vertebrae in less than a year. You should insist on a f18 fdg petscan and especially a netspot gallium ga 68 dotatate petscan. The second one is specifically for neuroendocrine tumors. They are not always slow growing, depends on if they they are well diffentiated or not. Please see a specialist. I had a whipple procedure to remove tumors in my pancreas and liver. Still they have grown in liver and spread to back. My surgeon told me not to worry, theyre are slow growing, 2 months after surgery i was having issues again, at which time they recommended i go to mayo clinic, they had no clue how to help me. Ive since switched hospitals i now have an oncologist, endocrinologist, and radiation treatment specialists i see. Please dont do like i did and trust surgeons. If youre surgeon or gastrologist is telling you this Run. You need to have these specific scans every six months. God bless you.
Wow, thank you so much for sharing this. I just found 1 in a colonoscopy. They are send me to get an trans.. ultrasound and a full body scan, then an endoscopy. Thank you for laying out a game plan, because this can be scary not knowing. Thank u❤
I wrote down the test and I'm gonna ask the gastro dr for them when I go .Thanks 🙏🏾
Omg this is so crazy i went in for a colonoscopy found out i have ibd they also found a polyp in the same place it ended up being the same thing neuroendocrine tumor grade 1
Any updates? Are you following up with the polyps?
@@learnfrombasics5575 for me I had to go back and get it fully removed then they discovered I also have pre cancerous cells around it so I'm on watch to make sure it doesn't become worse and turn into cancer
@@courtneygray7985have you done any EUS and CT scan ?
Meant “love your little pupster”!
I had mine in the appendix and i went for a normal appendectomy and they found out after the surgery during pathology test it was grade 2 and stage 4 my gallium dotate is negative but i hope it doesnt reccur i was advised to have follow up every 6 month
I was just diagnosed with a net in my rectum. I haven’t had my appt but everything I’m reading points to rectum nets typically not metastasizing so I’m keeping my fingers crossed
Have you consult anyone yet?
I hope you are still doing well. My NET (Carcinoid) has returned after 10 years. I had surgery to remove 6 NETs. Thought that was it. Have they offered you a PET CT with Dotate?. It is the best test available to detect NETs. My oncologist has been ordering this test for the last 5 years. 4 year in a row my old insurance carrier denied the test and told me to get a CT instead which is useless for NETs. New insurance compamy this year and they approved the test. Carcinoid is back. Its probanly been back for about 4-5 years. According to the test it hasnt metastasized anywhere else (Atleast its not detectable)
I have surgery coming up in a few weeks. ** Ironically my Oncologist told me that if the test was clear my visit in February would be my last. Now im gonna be seeing him for another 10 years.
Please stay on top of this and make sure you get all your tests.
I hope you're under surveillance by a NET specialist. They come back unfortunately. I hate it.
I'm having a follow up soon. Thanks for that reminder!
I have NETS. I had a major resection in March 2021 after I requested to have a pill camera procedure done during my endoscopy. If I hadn't had the pill camera procedure done they would have never found the main tumor in my small intestine (which actually was an obstruction). I ended up having over 70 grade 1 NETS removed from my small intestine and liver. Please advocate for yourselves and ensure the doctors listen to you.
Was it found in your small bowel?
Thank you for sharing. I am in the diagnostic stages yet but NET is high on the suspect list as my gastrin and chromogranin a levels were extremely high. I've also been displaying some symptoms. I was diagnosed with another uncommon GI diagnosis two and half years ago. There is question as to whether that was a misdiagnosis or not. I have my Ga68 dotatate PET/CT scan in three days.
How did it go.. hope you are well
@@MsPriyanka24 Thanks. The local doctors have run all the tests, founds some weird and contradictory stuff, and a bunch of other negative tests. They've escalated me to a regional specialist who said he would review my case but likely be referring me onto Mayo Clinic.
@@eclectricgay- sending prayers ..🙏🏿
@@MsPriyanka24 So after a lot of testing, many more rounds. They found atrophic gastritis and SIBO. Thankfully I am clear of NETs but they decided I am at very high risk with a variety of GI and pancreatic conditions. They are running genetic testing to see if I have the MEN1 gene.
I deal with this tumor mines arise from my pancreas that metastatic to the liver
Hi just wanted to know where was your tumore,which part of your body can you please let me know. I just been diagnosed today I have the same tumore but they thinking it’s near my apendics
How is this type of tumor found in the pancreas? With which scan
Hey I was diagnosed with one of these tumors I tried to reach out to you
Here cuz I had the same thing
Hello, by any chance did they check your chromogranin A level aka CgA. They tested me for it and it was at 29.7 which I believe is in the normal range. Do you mind sharing yours, if they did do it?
I just had my CgA checked a couple of weeks ago. Max should be 311, mine was 11679. Having biopsy soon.
فى بلادنا ليس لدينا اطباء متخصصين فى النوع من الاورام واريد اى احد يساعدنى فى خبراته حيث ان زوجتى تعانى من هذا النوع من الورم فى البنكرياس وهناك نقائل فى الكبد
Hi sister i had rare net in lungs
Sending prayers 🙏🏿 your way sis..❤
I had a NET in my lung
Can a tumor of this nature cause pain especially when sitting down??
From what I’ve read it’s possible but unlikely. I’d definitely discuss it with a dr if possible
Was anything linked to the COVID19 vaccine
No. This was prior to the vaccine even being released. That would have had no impact on a tumor.....
Hi, anyway to contact you , maybe facebook messager? regarding this rectal nets
Hi! My email is irajewelwellness@gmail.com