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.
Question: have you seen any studies that looked at the effect on keto/carnivore type diets might have on the tumor. Mine has been removed from my intestine but not before spreading to my liver. Thank you
Hi Mike, Thank you for your question and interest in keto/carnivore diets for neuroendocrine cancers. It's important to note that there is currently very little, if any, evidence supporting the use of these diets in such cases. While they have been assessed in epilepsy and some studies explore potential benefits for brain cancers, it's crucial to understand that what works for one condition or cancer may not necessarily be effective for others. Limited and inconclusive evidence suggests that a high-fat, low-carb diet might have some benefits in prostate, breast, stomach, and liver cancers. However, it is important to consider that a keto diet may potentially worsen cancer by promoting tumour growth and exacerbating significant symptoms like pancreatic enzyme insufficiency and malabsorption. Therefore, more high-quality research is needed to better understand the potential benefits and risks associated with these diets in neuroendocrine cancers. Diet and nutritional advice for cancer should be based on the same level of expertise and evidence as any other approved safe treatment. This is particularly important in patient groups like the NET/NEC community, where nutritional requirements can vary significantly among individuals and their specific neuroendocrine cancer types. We recommend watching Tara's video on myth-busting on our TH-cam channel for more information (th-cam.com/video/k4VMGrITMeI/w-d-xo.html). Tara also co-authored the MENETs booklet, which can be found here: www.neuroendocrinecancer.org.uk/wp-content/uploads/2021/01/Nutrition-NC-2021.pdf. It's always advisable to discuss your specific case with your Neuroendocrine Cancer Team and, if available, consult with a specialist dietitian experienced in neuroendocrine cancer. In the UK, the job title "dietitian" is regulated by law, and only those registered with the Health & Care Professions Council (HCPC) can use this title. Dietitians are the only qualified health professionals who assess, diagnose, and treat dietary and nutritional problems at an individual and public health level, ensuring they adhere to the highest standards of practice.
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?
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
Very informative thanks
Informative. 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.
Thank you. This was very informative.
Question: have you seen any studies that looked at the effect on keto/carnivore type diets might have on the tumor. Mine has been removed from my intestine but not before spreading to my liver. Thank you
Hi Mike, Thank you for your question and interest in keto/carnivore diets for neuroendocrine cancers. It's important to note that there is currently very little, if any, evidence supporting the use of these diets in such cases. While they have been assessed in epilepsy and some studies explore potential benefits for brain cancers, it's crucial to understand that what works for one condition or cancer may not necessarily be effective for others.
Limited and inconclusive evidence suggests that a high-fat, low-carb diet might have some benefits in prostate, breast, stomach, and liver cancers. However, it is important to consider that a keto diet may potentially worsen cancer by promoting tumour growth and exacerbating significant symptoms like pancreatic enzyme insufficiency and malabsorption. Therefore, more high-quality research is needed to better understand the potential benefits and risks associated with these diets in neuroendocrine cancers.
Diet and nutritional advice for cancer should be based on the same level of expertise and evidence as any other approved safe treatment. This is particularly important in patient groups like the NET/NEC community, where nutritional requirements can vary significantly among individuals and their specific neuroendocrine cancer types.
We recommend watching Tara's video on myth-busting on our TH-cam channel for more information (th-cam.com/video/k4VMGrITMeI/w-d-xo.html). Tara also co-authored the MENETs booklet, which can be found here: www.neuroendocrinecancer.org.uk/wp-content/uploads/2021/01/Nutrition-NC-2021.pdf.
It's always advisable to discuss your specific case with your Neuroendocrine Cancer Team and, if available, consult with a specialist dietitian experienced in neuroendocrine cancer. In the UK, the job title "dietitian" is regulated by law, and only those registered with the Health & Care Professions Council (HCPC) can use this title. Dietitians are the only qualified health professionals who assess, diagnose, and treat dietary and nutritional problems at an individual and public health level, ensuring they adhere to the highest standards of practice.
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?
i'm going in for my operation on the 26/01/24 and after seeing this I'm very scared of the outcome
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