Lost with no confirmation of NETs origin: Innumerable liver lesions

Hello @bluedane and welcome to the NETs discussion on Mayo Clinic Connect. I am so glad that you were able to be seen at Mayo Clinic. It sounds like this was a better experience for you than that of the original doctor that you saw.

I have had three surgeries for NETs (over the last 20 years) in the duodenal bulb, with no apparent metastasis. I am also asymptomatic.

You were inquiring about anyone who has had "bland liver embolization." We do have other members who have discussed this procedure including @sturns
@sophiarose and @trivia. I hope that they will post with you about their experience with this treatment.

I'm glad that you have done a lot of research on this topic. NETs aren't something that come up in ordinary conversation, so it is important to be proactive and research as much as possible.

Has your medical team suggested bland liver embolization as the next step in your treatment?

Thank you for your response and treatment info. It seems a good thing that you have one in lung and one in liver and they can zap out the liver one good. The nurse practitioner who first told me of my diagnosis was " you are lucky - if you have to have something this is the best kind to have because it is treated as a chronic manageable condition" her words have stuck with me thru this. Good luck on your journey.

Thank you for sharing what your nurse said - it gives me a litle more hope. I am hoping that the lung tumor can also be removed, but the doctor isn't as hopeful about that one. He is conferring with Mayo about that one.

Hello @bluedane and welcome to the NETs discussion on Mayo Clinic Connect. I am so glad that you were able to be seen at Mayo Clinic. It sounds like this was a better experience for you than that of the original doctor that you saw.

I have had three surgeries for NETs (over the last 20 years) in the duodenal bulb, with no apparent metastasis. I am also asymptomatic.

You were inquiring about anyone who has had "bland liver embolization." We do have other members who have discussed this procedure including @sturns
@sophiarose and @trivia. I hope that they will post with you about their experience with this treatment.

I'm glad that you have done a lot of research on this topic. NETs aren't something that come up in ordinary conversation, so it is important to be proactive and research as much as possible.

Has your medical team suggested bland liver embolization as the next step in your treatment?

The video you posted, how do I contact his office? What hospital does he work from?

The video you posted, how do I contact his office? What hospital does he work from?

Thank you for sharing what your nurse said - it gives me a litle more hope. I am hoping that the lung tumor can also be removed, but the doctor isn't as hopeful about that one. He is conferring with Mayo about that one.

For what its worth, I would go to Mayo asap.
I wouldn't want someone practicing on me. I'm on my 3rd hospital, was written off by the first two last year.

@k8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my liver. It's NETliver and slow moving. I'm currently a "low" grade and a petscan on 2/10 indicated the source was the pancreas, though there are two tiny spots on the pancreas and my oncologist said I don't have pancreatic cancer. The focus right now is on the liver. On 2/15 I received my first injection of somatuline depot (generic name: Lanreotide). It's a shot I'll receive every 28 days. How does lanreotide work for neuroendocrine tumors? Lanreotide is a synthetic version of somatostatin (a somatostatin analogue) and slows down the production of hormones. This helps to control the symptoms of carcinoid syndrome and slow down the growth of the cancer. It's not a cure but allows one to control and manage the growth. Next week I have two appointments with specialist. One is a radiation oncologist and the other a specialist in oral chemotherapy. One option may be to inject radioactive beads into the liver with the objective to shrink and kill the cancer. My hope is this would then result in the ability to surgically cut out the cancer at some point in the future. The Lanreotide shot was fine when given (it's a wide needle and they inject you in the butt) that grew more painful over the course of the day. At bedtime I took two Tylenol and put a cold compress on the shot area. That dissipated the pain enough that I could sleep. Though one side effect is diarrhea and I certainly had my share of that during the night. I agree with the individual who advised you to bring a note taker. I've been keeping a journal of how I feel daily, notes from hospital visits, and food intake and results Diarrhea has been issue for me and was one symptom that drove my PCP to focus on the liver this past fall. Knowing what does or doesn't upset your stomach is key to feeling better. I feel fortunate to have a plethora of excellent Dr's in the Northern VA area and the two specialists I'm meeting with next week both called to introduce themselves. The plan is to do another petscan in May or June to see how I'm progressing. I hope this info helps. I'll post again after next week's appointments. Hugs to youk8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my liver. It's NETliver and slow moving. I'm currently a "low" grade and a petscan on 2/10 indicated the source was the pancreas, though there are two tiny spots on the pancreas and my oncologist said I don't have pancreatic cancer. The focus right now is on the liver. On 2/15 I received my first injection of somatuline depot (generic name: Lanreotide). It's a shot I'll receive every 28 days. How does lanreotide work for neuroendocrine tumors? Lanreotide is a synthetic version of somatostatin (a somatostatin analogue) and slows down the production of hormones. This helps to control the symptoms of carcinoid syndrome and slow down the growth of the cancer. It's not a cure but allows one to control and manage the growth. Next week I have two appointments with specialist. One is a radiation oncologist and the other a specialist in oral chemotherapy. One option may be to inject radioactive beads into the liver with the objective to shrink and kill the cancer. My hope is this would then result in the ability to surgically cut out the cancer at some point in the future. The Lanreotide shot was fine when given (it's a wide needle and they inject you in the butt) that grew more painful over the course of the day. At bedtime I took two Tylenol and put a cold compress on the shot area. That dissipated the pain enough that I could sleep. Though one side effect is diarrhea and I certainly had my share of that during the night. I agree with the individual who advised you to bring a note taker. I've been keeping a journal of how I feel daily, notes from hospital visits, and food intake and results Diarrhea has been issue for me and was one symptom that drove my PCP to focus on the liver this past fall. Knowing what does or doesn't upset your stomach is key to feeling better. I feel fortunate to have a plethora of excellent Dr's in the Northern VA area and the two specialists I'm meeting with next week both called to introduce themselves. The plan is to do another petscan in May or June to see how I'm progressing. I hope this info helps. I'll post again after next week's appointments. Hugs to you.