Welcome to Neuroendocrine Cancer UK's RU-vid Channel.
Neuroendocrine Cancer UK exists to address the unmet needs voiced by the Neuroendocrine Cancer community, to support patients and their loved ones with the physical and psychological burden of Neuroendocrine cancers.
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.
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.
Thank you for sharing your story. We're very sorry for your loss. It sounds like your dad was a strong and determined person, and his experience highlights the importance of awareness and early diagnosis of NETs. If you need any support or someone to talk to, please don't hesitate to reach out to us.
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.
We're sorry to hear about your frustrations with your diagnosis and the way it was communicated to you. It's understandable to feel upset when the rarity and seriousness of your disease are not fully acknowledged. If you need more support or information, please visit our website, or get in touch.
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
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.
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.
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.<<
Deja vu! I'm a retired physician who had diarrheal symptoms as a registrar, had a colonoscopy and told I had IBS. That went on for years, in the days before body CT, MRI and so on. Despite that I managed to get through Commando training aided by imodium or codeine. I had another colonoscpy in Canada when I was working there doing my MD thesis. Again, normal findings, but on the table I had a severe sweating episode while they wrestled yo get round the hepatic flexure. Knowing what I know now that was a carcinoid crisis. What was the BP? No idea. No one took it, but 60/? I would guess. And so it went on, I lived with IBS jntil the flushing arrived, along with abdo pain due to Superior Mesenteric Vein thrombosis. Urinary 5HIAA was unimpressive but as I was getting no where I like you went private, but at the Mayo Clinic in Rochester MN. Diagnosis, Carcinoid as I thought but which no one else believed as I had no major liver secondaries. On return home I had an octrescan than was positive and then an excision node biopsy. Carcinoid, but very low mitotic rate. I had the diagnosis for 21 years now. The primary is in the coeliac plexus surrounded by a mass of fibrosis which compromised the clockwork - SMV, ..Thankfully the SMA is OK. I've had three fractions of PRRT with Lu177 and as I'm syndromic again I'll be having two more very soon. Did I ever see my clinical kingfisher in practice? Yes! Sometimes it was getting very close to home, but in a DGH I was the best equipped to deal with the urgencies and refer them. In fact, among my cases were two medical colleagues who had carcinoid detected and removed at appendicectomy; one was my houseman for a while as well. There is plenty more I could tell you but I'll save that for another day. Best of luck with your carcinoid. Don
Good talk. I have an acquaintance (White male, in his late 50s) here in the US who had most of his intestines removed due to NETs. They went in twice and took some intestine out both times. He has about 7 feet of intestine left. He feeds liquid nutrients through a tube forever and can't hold down regular food when he tries.. He tries to pretend everything is fine, drives his car places, visits friends, does shopping, etc. However, he staggers when he walks, occasionally falls,can't pick up and carry a gallon jug of water more than 5 feet without having to put it down, and gets very tired very easily and has to take many naps during the day. He has had to give up his home and move in with friends so someone is around to help him (although he often refuses it). The surgery and various treatments and chemo didn't get it all and some heart problems have also started. Add to that periodic infections requiring hospital stays around the site of the feed tube due to not following sanitary instructions and some kidney issues. Oh yes, constant pain. It has been about 2 years now and he describes himself as a slowly but steadily sinking ship and knows he is dying. So yes, as an observer, I would say quality of life is a valid consideration.
Thankyou for this. I assume a newer youtube channel feels like shouting into the void, but i really appreciate this info. This is helping me process a recent NES diagnosis in my mom. Thankyou very much, genuinely.
I do believe a keto or carnivore diet does benefit a cancer patient it may not be the magic bullet to cure them but I do believe it benefits them. Best to test the theory and see if it does benefit you.
Dear Alan, thank you for reaching out. We understand that facing surgery can be daunting. It's natural to feel scared, but you're not alone. We encourage you to reach out to either us (0800 434 6476), or your healthcare team to discuss your concerns and get personalised support. They are there to guide you through the process and address any questions you may have. Wishing you strength and a smooth recovery.
@@neuroendocrinecanceruk thanks team my Hospital in the UK have been very supportive and informative they are going in with keyhole surgery first i think to see how bad it is then i think he said open me up to remove the part of my bowl
Alan, I don't know your situation and am not a medical doctor, but I read that surgery is the only curative treatment. Consequently, I jumped at the chance of surgery for my condition (NET in the small intestine). There are always risks of surgery but if the professionals have advised it, you are wise to follow their medical advice. I had my op 6 months ago: it went well and I was very impressed with the quality of care from the UK NHS. I am scared it will come back but am very grateful to the surgeon and the hospital staff for increasing my chances. Wishing you all the best with your operation and recovery.
@@simonappleton8296 Thanks mate i dont know how bad it is yet I was supposed to go for a pet scan but my doc said there's no point as we know what it is i have my pre opp next tuesday then in for it doing friday
@@simonappleton8296 Was your tumour completely removed, or does it still show any cancer cells. Did they prescribe any further treatments or medications
I haven’t had PRRT yet. No chemo. No surgery. No other treatment only a clinical trial for a pill version of Lanreotide /Octreotide. The hair thinning, extreme fatigue, short term memory lapses, near sightness was bad also.
I'm sorry to hear that you're experiencing these challenging symptoms. It sounds like you're going through a lot. It's important to communicate openly with your healthcare team about these side effects, as they can provide valuable insights and may be able to adjust your treatment plan to better manage these issues. Additionally, seeking support from patient advocacy groups like ourselves, or connecting with others who have experienced similar treatments may provide you with additional resources and a sense of community. If you have any specific questions or if there's a way I can assist you, please visit our website for information, or to get in touch. www.neuroendocrinecancer.org.uk
Can we say the the treatment of Nets has two objectives-control of symptoms or consequences and eradication of tumor cells by surgeries or local ablation and or systemic therapies.
Dr Sarkers interview was absolutely amazing. It answers so many questions that as a patient, especially new one, you feel unsure who you can ask. Especially as Teams and CNS are all so busy. Please listen to this. Its really helpful. Thank you. Debbie
Please HELP!!! I'm 72 years old with neuroendoccrine breast carcinoma 3.1cm stage 2 poorly differentiated. I'm aware its a very agressive cancer. I had lumpectomy and my surgeon confirms that lymphs nodes were negative er+ pr+ her2- . All tissue around cancer margins very good. I saw two oncologists, one for radiation and the other for chemo. They don't know if I will benefit from chemo but I will have radiaton and hormones therapy. What kind of treatment do you think I should have and what are prognostic for this kind of cancer if I take chemo??? I'm in a good health but I want to have quality of life too and if treatment won't help to live longer then I would refuse chemo treatment. COULD IT BE A PRIMARY CANCER IF THEY DON'T SEE ANYTHING ON SCANS like nuclear bone, ct scan for abdo chest and brain???
Hi Lina, I'm really sorry to hear about your situation, it's important to discuss your specific case and treatment options with your healthcare team, including your oncologists. Given the complexity of your situation and the medical details involved, I strongly recommend that you reach out to your medical team or our specialised helpline - 0800 434 6476, or complete our nurse contact form: www.tfaforms.com/4779104 . They will be able to provide you with the most accurate and up-to-date information about your diagnosis and treatment options. Your healthcare team can evaluate your case thoroughly and provide you with the best advice based on your unique circumstances.
Iv just been diagnosed with neroendercrime lung low grade im having regular injections,im 42 have a 12 year old an 18year old..i feel fine they found it on a chest xray in both lungs my faith in jesus keeps me going,im still learning about this an some days are quite dark but i try not to focus on it an think to much about the future an just take one day at a time..thankyou so much for this as im not on Facebook ect so dont know anyone else with this but iv learnt a bit more listening to you x❤
Thank you for sharing your journey and your faith, and welcome to this community. It takes great strength and courage to face a new diagnosis, and your positive outlook is truly inspiring. Your focus on taking one day at a time is a valuable perspective. Sometimes, when dealing with a complex condition like neuroendocrine cancer, it's the small steps and moments that matter most. Your faith can be a significant source of comfort and support during challenging times. Remember, you're not alone on this. Even if you're not on social media, feel free to ask questions or share your thoughts anytime. We're here to provide support and understanding.
@@andreacockerill6676 Thanks Andrea. We are based in the UK too. I'm not sure if you're aware but we have lots of services which you may find useful, include a freephone helpline, and support groups. We are actually running a dedicated Lung online support group in December. Here is some further information: www.neuroendocrinecancer.org.uk/events/67761-256-827-717-791-760-646-674-779-314/ If you'd like to talk more about our services, please drop me an email: hello@nc-uk.org, or please give our helpline a call: 0800 434 6476 (opening hours: Tues - Thurs 10am - 4pm). Leanne
Thank you so much for taking the time to post this video. I received great benefit from listening. I am trying to figure out a cheese I can incorporate into my daily diet since recently it was found that I am allergic to cows milk. On top of the Neuroendocrine cancer DX. Also, any idea how to try and replenish my "Immunoglobulin A" factor? As mine is 6 in value of minimum I believe is 51.
Hi Anthony, here are 2 links that may prove helpful (both are UK) Information on cows milk allergy (in adults) is available from Allergy UK here - www.allergyuk.org/resources/adult-cows-milk-allergy/ There are a wide range of plant based alternative milk products like soya, coconut, oat, almond, hazelnut, rice, hemp and pea milk readily available in supermarkets which can be found in free from sections. Please do ensure the brand you buy is fortified with calcium, you can check the ingredients list to be sure. Many supermarkets sell vegan / dairy free cheeses. Immunoglobulin A deficiency - www.immunodeficiencyuk.org/ Immunodeficiency UK, is a charity supporting individuals and families affected by a primary and secondary immunodeficiency in the UK. Their information page has a number of advice and information leaflets available to download here - www.immunodeficiencyuk.org/resourcesforpatientscarersandprofessionals If not UK based, these organisations may have links outside of UK that they can recommend.
I love goat cheese, it is delicious, and tangy, and can be had simply on crackers, bead, mixed into salads, and sauces, and we use it on our homemade pizzas.
Become your own expert. Unless....this disagrees with the prevailing "standard of care" and then you are ridiculed and banned like the witches were burned on a stake. Yes. It has happened to me
