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Well done and very clear presentation. Thank you.

Well explained

Thank you for the information 🌺🌺🌺

My husband has just been diagnosed with neuroendocrine cancer in August 2024. We had never heard of it! Thank you for what you are doing, I am a Brit now living in New Zealand but worked for many years in the NHS. ❤

Informative thanks

Very informative well explained hopeful will ascites get better

Thank you so much for taking the time to understand this process I and many others are going through. I'm still in the process of getting two more scans of my pancreas and gallbladder. Pain has been on and off and listening to you helps me try to understand myself. Bringing peace after acknowledging this is real and there are reasons for the pain and go where the drs are suggesting when I decide its for my best interest. I will look forward to seeing more of you in the future. Thank you so much. Beth

Very informative did you have ascites

Please do your own research. This video is not helpful, wrong on so many occassions and completely uninspiring with no helpful takeaways.

It should not be called radio-embolization as there’s no embolization, the arterial supply remaining intact.

I think you are wrong. Petscans use Glucose as it goes straight to cancer sites. So how do you explain this? Certainly avoiding all the processed junk food would be beneficial to the body.

Very informative thanks

MIB 1 staining shows positivity in less than 2% of cells says on my report. So does this mean Ki-67 is less than 2%? Thanks

Thank you so much.

My husband has just had an operation to remove the primary neuroendocrine tumour from his mesentrey plus a few tiny ones. He was lucky enough to not need a colostomy bag as surgeons managed to join his bowel back. I have researched a lot of YT Videos about this condition but the problem is my husband does not want to know or discuss or chat about any of this. I feel that I am alone and he is merrily doing his own thing. Hopefully, when we go back to the hospital for his first outpatient appointment and the plan of action, we will find out if there is any support in New Zealand 🇳🇿

Hi Ronny, thank you for your talk in a non technical way. I have been living with NET's for 10yrs or more. The primary in the small intestines, secondary in my Liver. 2 yrs down the line I had open Heart surgery to replace a Tricuspid valve which the NET's damaged, and a few years after that my Liver was resected to remove tumours that had enlarged not sure how much Liver was removed but it did grow again. Every 28 days an octreotide injection in the buttocks and yearly CT & MRi scans to check its progress up until this year 2024 they have pick up other Net's in Lymph nodes which has resulted in a Gallium - GA68 DOT PETCT scan in a London Hospital and perhaps having PRRT treatment in the future this is still in the discussion stage. Regards Eric Macey

Doing a lot of research as my husband has just been diagnosed with an neuroendocrine tumour in the mesentrey. This was diagnosed after an emergency CT Scan with contrast after he was admitted to hospital in severe pain with vomiting. They operated on him a week later and took 1.9 of his small bowel out plus his appendix. His bowel was successfully joined back together so no colostomy bag needed. He has been home one week and he is waiting for his Outpatient Appointment to hear the results from the Pathology Lab and what the plan of action is moving forward. He had had sporadic pain in his gut over the last 3 years which his GP said was colic. No investigations were ever done. He is 78.

US NET patient here. My most difficult pain right now is getting billed every day for treatment and threatened with collection. Hard to say what will run out first, time or money :(

Excellent words!

I have a Grade 3 NET which they started treating with chemo and and now are using PRRT. So I had one session of PRRT, three more scheduled and then I wonder what, back to chemo? Too much radiation would be bad but the chemo is pretty awful.

This is ever so helpful.

I lost my dad to this very illness two years ago. His symptoms began as supposed bloating and indigestion. The doctor initially said he was allergic to peanuts, so dad took those, with a heavy heart, out of his diet. The symptoms didn't subside, however, and gradually became worse with bouts of sudden vomiting and diarrhoea. He was eventually diagnosed with NET, with the mass being wrapped around the main artery in his stomach. He was advised to adjust his diet, but, being a type 1 diabetic, that was easier said than done. Before COVID, he took part, as he always did, in the London to Brighton bike ride in 2019, despite fluid on his lung, which appeared to be a manifestation of the illness. I'm glad that this illness is becoming more widely known. Well done to David for telling his story. It takes a lot of bravery and fortitude to live with such an illness.

My NET was discovered in my stomach, and is very differentiated, along with a autoimmune atrophic gastritis, my case was discussed between pathologists and my gastroenterologists, preventative going to the Oncology and seven more ambulatories... B12, Folic acid, Vitamin D3. What made me lose my patience, was the professor saying oh we see it every day! No! One patient among 100.000, now one in 6.000 is already diagnosed as rare. Also my grandfather, uncle and my mother had cancer, my mom had adeno carcinoma. My Oncologist said there's no chemo or radio for it, only surgery and then... possibly sessions or chemo.

Sure would be nice to have that service here in the US.

Thank you for this, it’s very helpful.

Can you please discuss breast NET. It's rare but no info on it. A friend has recently been diagnosed with this

so helpful thank you :)

so helpful thank you

اخى الكريم لايوجد ببلدى اخصائيين اورام صممية عصبيه هل لك ان تساعدنى فى استشارات طبية

Excellent, many thanks for this, very informative. Alan Motyer Lowndes (primary in Pancreas)

Thank you for this xx

This is complex, but extremely helpful, thank you. Alan Motyer Lowndes

هل يمكن ان يساعدنى احد زوجتى تعانى من هذا النوع من الورم وليس ببلدى هذا التخصص

هل يمكن ان يساعدنى احد زوجتى تعانى من ورم صممى عصبى وليس فى بلدى هذا التخصص

I have been diagnosed with NET in 2018 in liver but still my primary source of tumour is unknown . First I went through duedonal perforation and after one month I have been diagnosed with net of liver but still primary source is is unknown . Can u please guide me what should I do to find it

❤ was your lung nodule a granuloma?

Can helping for my wife she have NET pleas help I can to send report

❤ so helpful

EXCELLENT LECTURE ..THANK YOU

I had my surgery on the 26th and i'm back home feeling well trying to build my strength back up I have to go back and see my surgeon on the 5/4/24 to his clinic they said they removed the some of my small intestine and part of my large intestine I'm not sure about any lymph nodes I'll ask him when I see him I had an infection in the wound but its ok now the only trouble i have is my stools are loose to watery its ok to live with I suppose and I hope its ok when I go back to work they found a benign nodule left lung base and small lymph nodes right external iliac/groin which may be reactive what ever that means but I'll find out when i see him I dont know if I'll nee anymore treatment like chemotherapy or anything. thanks for all your support and your information it's really appreciated.

How are you all doing now we have just started 2024

EXCELLENT LECTURE ..THANK YOU

Thank you for this informative talk

Thank you for the interesting talk. I like you had a neuroendocrinal tumour in the small intestine that needed surgery. Will you be surprised if I tell you that to get the diagnosis I saw my family doctor once. He sent me to a specialist. She said she would run all possible tests . I was given.my diagnosis on 7th November and operated on 14th November. Wonderful! Amazing! How is that possible you ask? I don' t live in the U.K.

Thank you. This was very informative.

I wonder if it’s possible for the NET in the small bowel to be so small as to not show up on Dotate pet scan but the suspicious nodular area to show up on cat scan with contrast? Or could something prevent the uptake of the gallium prior to scan and prevent the lighting up of the tumor?

Well, watching how the puddles of sweat just dried up within 48 hours was so satisfying, I used what I read about the other day. Although it actually took about 72 hours for my sweating to normalize, I went ahead and go'ogled the latest by Cynthia Yulesin and I don’t have to change clothes 2 times a day.

>>Undetectable levels of Prostate Specific Antigen (PSA) have been reported from the first patient with metastatic castrate-resistant prostate cancer (mCRPC) to ever receive two cycles of Clarity’s 67Cu-SAR-bisPSMA at the 8GBq dose level. PSA is a marker of tumour burden, clinical response to treatment and an indicator of the recurrence of disease for prostate cancer.<<

The UK is miles ahead of neuroendocrine cancer. I too am matastic colon primarynto.liver and lymph node. But I'm US so little research has been done

Does anyone suffer from uncontrollable diahrea? I am ready to quit