Welcome to the NETs Group! Come say hi.

Hi Neuroendocrine Group, I am Neuroendocrine Breast Cancer (rare) with mets in liver and bones. It took 2 years for me to find a doctor to acknowledge this. Prior, I had been treated like every other breast cancer patient and it wasn't working. Now I have had one Bland Liver Embolization to the right lobe, and have my second one coming up soon. This should take care of the liver tumors. BUT, the bone mets are worse, even on the Octreotide, Afinitor and Anastrozole. Sooo, I have been given the option of Lutethium infusions, which is really radioactive intravenous treatments that target the cancer. Its given over a course of 6 months, once every 2 months for 4 treatments. I'm a little nervous about it. Anyone else have liver and bone mets that this was successful in treating? Or for any other NED's? What's been your experience? I've heard about some good results.

Hello,
Am Ayesha from Massachusetts, just diagnosed with small bowel carcinoma, 2 weeks ago. I have more scan ahead ( dotatate) then consultation. I am overwhelmed, don’t know if am dying or what! I was supposed to see a doctor last week but then i got covid so appointment was moved to 2 weeks later. I don’t have any info as of right now, i just cant relax and can’t sleep. I don’t know what to expect on my next scan , i am praying that my cancer has not spread to my organs.

Thank you, @ce1b. This information might be very helpful to other veterans!

Haven't found link yet, but this is what I've found so far.. I know NETs Vets group exist but may have to reach out to the Veterans Health Administration (VHA) National Precision Oncology Program for more informaion.

As you can see from the link below.. there is a new push to reduce cancer by 50% in our veterans.
https://www.cancer.va.gov/CANCER/docs/NOP_CAMPAIGN_GUIDE_Web508.pdf
Main contact page
https://www.cancer.va.gov/CANCER/NPOP.asp

Can do!

Hello @ogcen and welcome to Mayo Connect. I can certainly understand your wish to be at a cancer center that excels in treating this rare disorder. Since your doctor has suggested it have you considered asking for a referral? For any rare diagnosis, it is always wise to be seen in a medical facility where they specialize in treating that disorder.

For your information, here is a link to an article about this from Mayo Clinic's website:
--Pheochromocytoma
https://www.mayoclinic.org/diseases-conditions/pheochromocytoma/symptoms-causes/syc-20355367
You say that you are feeling 60% better with your current treatment. What symptoms are the most difficult for you right now?

Hello @ce1b

I would be very interested in learning about the VA facility that is doing NETs studies. Will you please post the information when you find it?

NuB.. No I don't, but I have but other problems that seem to be happening to by body. I'm sure there will be more as cancer grows.
Everything I've read says that surgery is the gold standard for removing the NETs tumors or for relieve of the carconoid syndrome.

Question… I am having surgery the first week of November to remove roughly 12 inches of my lower section of the small intestine and two lymph notes. I was diagnosed with a dozen or so small carcinoid tumors about a month ago, I have never had any side effects or symptoms. My question is has anybody had this surgery laparoscopically or a large incision, what was your time in hospital, blood in stool, pain level and the first two weeks what should I expect.
When could you function alone and also drive. Thank you

@ce1b do you also have carcinoid syndrome?