Medicine for members: Neuroendocrine tumours - the quiet cancer

[@fjacki1]

Enjoyed the lecture I was diagnosed seven years ago with stage 4 neuroendocrine pancreatic cancer with mets to liver and I'm still here :) living a full life. Praise God!

[@khalid6184]

LINDA KUHNEY great to hear that Linda my dad is diagnosed with the same what treatment did they give you

[@fjacki1]

Khalid M I had surgery and than was put on afinitor

[@shannonhoward4135]

Hi Linda, what treatment did the doctor give you that help you beat it?

[@niranjankumarmahto7548]

Near my dad is also diagnosed with stage4 Neuroendocrine Carcinoma Stomach with liver metastases. What treatment we should go for? Please help.

[@japtip06]

Praise GOD...happy for you Linda...but guys all the glory is to GOD ...pray and follow JESUS CHRIST....and then do all the research you need to do before making a decision GOD bless you all

[@ryanwdavies1]

What a brilliant talk I could listen to these two all day ❤

[@krukus7]

Dr. Toumpanakis it was a pleasure to meet you when I came along with my mother who is a patient of the team at Royal free Hospital, thank you so much for your knowledge and everything.

[@aprilsanchez9240]

Treating the patient like a human with a life is much better than focusing on one part of that life. We're all going to die some day, but my father has chosen to just keep living rather than going in for major surgery at the age of 75 for something that is no more lethal than whatever else might kill him (including the surgery), drainage tubes, infection...Having the right to choose is fantastic for his outlook on life...

[@mikemc41]

I've read that most deaths from NET are because of liver failure so it seems to me the key to staying healthy is keeping a low tumor burden in the liver. I guess i'm one of the lucky ones. I was diagnosed 2 years ago with pancreatic NET. Out of 5 important criteria' 4 are in my favor. I have grade 1, non-functional, well differentiated disease with low tumor burden but it's also stage 4 (i can't be cured) My most recent scan shows tumor growth in the liver so my Oncologist (Dr Diane Reidy from MSK NYC - bless her heart, she's the best!) has started me on Sandostatin in the hopes of preventing further tumor growth. I took the first monthly shot about 6 hours ago. So far i don't feel any negative effect. Hopefully that continues.....

[@bluemoonshine6360]

How are you doing?

[@mikemc41]

@@bluemoonshine6360 The medication is working. No further advancement so far. No pain or symptoms so I’m able to function and work.

[@malena7362]

@@mikemc41 do they ever give you a prognosis?

[@mikemc41]

@@malena7362 No prognosis. Cancer is not advancing but anything can happen.

[@babupukkunnen6549]

K.m

[@UKAlanR]

This gave me some information above and beyond what I had learned elsewhere, and helped by taking the time to tell a full story with lots of useful detail. Christos and Jorge make a great presentation team :-)

[@Wysgirl]

Brilliant. I have enjoyed the presentation by both these gentlemen which has made me more aware of my own condition which is a neuroendocrine tumour in the abdomen and cushings disease. Am awaiting the procedure that will eventually take place. I have been told I am a complex case.

[@anabonilla2560]

The lecture was very helpful for me. I was diagnosed with neurocarcinoma a month ago I have been suffering with vomiting,nausea,wisely, and redness in my face for about 4 month. I am very scare about my life expectancy. I am a breast cancer survivor and now I was found a neurocarcinoma in my small intestine .

[@REPS-kb7up]

This was a great presentation. It would be helpful if you posted the slides somewhere to view at length. Thanks though. I learned a lot.

[@teresawingate7275]

I have 6 small tumors outside intestines and it's in a hard place to get to. I had original surgery 11 years ago and had 21" of intestines removed, with tumors in 10 lymph nodes that were removed. I had one cut out of my neck a few years ago, and had liver ablation of 4 small tumors most recently. My wonderful Oncologist has done a great job staying on top of it. Overall I've felt good. Colonscopy did not show the source so surgeons don't want to operate just to have it return, and I think they're concerned with complications since it's hard to get to. They're talking about the once a month shot. After I spoke to my Oncologist and now seeing your video, I feel much better about it. I was bummed at first and just wanted it out. It doesn't sound like side effects are too bad and it seems it's proven to be effective and make people feel better. My doctor said that she's had patients on shot for years that are doing well. Thank you for sharing your teaching video! I was just on FB and it popped up. God bless you.

[@suzysmith4254]

You need to get tested for MEN1

[@Sgtyork488]

My wife got news of NEC of the galbladder and were doing some scans on this conning. Thursday. I thank you so much for this opportunity to listen to you. I am feeling better and understand more although the condition is ugly you have helped me come to terms

[@gulitaman8693]

Thank you for sharing , Awareness !!!I was diagnoses with this type of cancer , Very surprise someone actually knows about this, my oncologist is working hard on my case , I did get one on my small bowel and surgical removed it was 5cm , I was pretty sick and now its on my liver ,I see this video is old. If any new info please post it, this was very helpful

[@linavillalon1319]

My hubby had accidental finding NetPanc . He's had Distal panc+ spleen that have been removed via laparoscopic last Aug 2023 and slowly recovering. He is on Creon.

[@juliusevola7172]

Every time I hear a doctor say 'This organ exists for no particular reason' I lose a bit of faith. They said that about the appendix, turns out its a storage system for our microbiome in the event of extreme sickness or diarrhoea. They seem to think they can also remove the gallbladder and other organs with little effect which also seems not to be true. Thanks though, useful info, just surprised to hear this.

[@EZAGEEZAR]

Thymus it's known to release the t cels ...what the Dr's should say is that they don't know for sure why this organ exist or simply this organ does not play a major role

[@sssh.koi.]

Lost my mother yesterday net😢 Octreotride first dose She can't handle it even one day Age 73 years Cardiac arrest 😢on my lap I was helpless 😢😢😢

[@angelahoodcrosby4944]

Hi I am new here, diagnosed 1/16/2024 NET. Tumor found during routine colonoscopy on 12/28/2023, removed 1/16/24 additional findings in lymph nodes, liver and abdominal wall. All so overwhelming. Presently I have had 2 injection treatments of Lanreotide, some side effects but nothing out of the usual. I guess since it’s in my liver the cancer is stage 4 but what does that mean? I guess I will continue to follow orders and do injections .

[@annasavin1727]

Just been diagnosed with Men1 waiting for genetic screening for the family, maybe my roseca isn't roseca!

[@andynorris1990]

Top draw. Magic Info!

[@TheMahaGuy]

No, neuroendocrine neoplasia is not rare, its detection is rare. It's understanding is rarer still.

[@suzysmith4254]

That is so true both me and my mother in law were diagnosed not so rare at all

[@Katie-vy5rd]

If you are misdiagnosed with churg straus and given prednisone and methotrexate does this incidentally relieve symptoms if you have carcinoid syndrome? Any physicians out there? And is a pituitary tumor (acronegaly) considered a NET?

[@maggieg7673]

This is amazing!

[@ceceliamanalim715]

I loved the way it explained

[@nooraakhtar27]

I have small cell NET of unknown origin I have some questions about it, is it possible that I discuss about it to you?

[@863NightOwl]

Is there a chance that serotonin levels can be normal if the diarrhea, n flushing have calmed down for a few days? That happens to be when I did the 5-HIAA test..What is the average time having Carcinoid Syndrome before being diagnosed? My symptoms are diarrhea, flushing and rapid heartbeat, but my 5-HIAAA test was within normal range.. Tomorrow my Dr wants a repeat test and a blood test, next week a colonoscopy..I'm a lil afraid because its been going on for years.. Of course I don't know, but I feel like it's gonna be found in my pancreas because I was recently diagnosed with diabetes and I'm starting to have a little bit of left side pain after I eat..

[@carolehanley9000]

Hi - how are you now? I hope you are well

[@fma7726]

Very interesting!

[@dalegrahme1198]

What about the uas any news

[@sarahviszneki8250]

30 years old, just diagnosed with a stromal tumor in my stomach, I appreciate this input, I have many preexisting conditions, would be interested in donating dna for studies

[@arthurfirkins1031]

Excellent explanation.

[@suzysmith4254]

Just be careful these doctors arent just trying to get free dinners. I went to a conference listened to a doctor in canada and was so excited to see him in person to discuss my case. He said i was cured for life and was the most arrogant jerk i have ever met in my life so sometimes these conferences can be very deceiving.

[@monicark2030]

Steve Jobs had it in his pancreas...

[@n01gonzalez1]

my boyfriend has been diagnosed with neuroendrocrine tumors stage 4 started in pancreas. just curious if there is info on what to expect of symptoms in the future. He is on sandosatin injection and there is nothing else we can do.

[@shrutihegde7274]

My father passed away one and half months later after diagnosis of pancreatic neuroendocrine tumor. He was given Sandostatin too. But tumor was metastated to liver and hardly 10 percent of liver was working. The pain he went through was terrible. I just wish your loved one get well soon.

[@n01gonzalez1]

Shruti Hegde Sorry to hear he passed. This has been a tough road watching him vomitting, weak and the weight loss. May God bless you and your family.

[@Србомбоница86]

@@n01gonzalez1 hope your boyfriend is better now....its a very sneaky disease

[@latasha3472]

Nothing! I do mean NOTHING quiet about this particular cancer this cancer as aggressive as the other one but better treatment and longer life expectancy but this cancer does serious damn to every organ and cells in it’s path!

[@asmaali6829]

Which treatment did you get ?

[@monicark2030]

NET patient here, NETs are rare, one in 100.000!

[@Jkstolz]

This is why 50% or greater are found at Autopsy. They aren't RARE. Do better.

[@Mihaela_My_Bella]

Arizona Sky thank you! Misdiagnosed too. So many people misdiagnosed. I have an insulinoma and I was told I had prediabetes and depression. And even munchausens. It took years to get the doctors to do the right tests. I knew what I had years earlier. Patient persistence is key. Many years and 9 doctors later.

[@Србомбоница86]

I agree entirely....also most people that are diagnosed are diagnosed at stage 4 ,its very slow and sneaky cancer

[@malena7362]

@@Mihaela_My_Bella how are you doing now?

[@Mihaela_My_Bella]

@@malena7362 still just managing my tumor. Covid kinda messed a lot of the progress I was having. Located the region of the tumor. Just needed someone who could do a central pancreatectomy (mine is right in the middle of the pancreas and central pancreatectomy saves the spleen and quite abit of the pancreas.)

[@malena7362]

@@Mihaela_My_Bella so sorry you are going through this ? How were you mis diagnosed for so long? We’re you not offered ct scans? Or pet scans ? Maybe ultrasounds?

[@Dr_pradeep_dahiya]

Who is here for irfan khan ?

[@keepcalmcarryon3358]

What’s with this weirdos smiling, giggling and awkward nature? Imagine him taking care of you