Neuroendocrine Carcinoma with Liver Metastasis

Hopefully there is someone out there still monitoring this. I have chronic NET that started in the small bowel and was stage 4 before it was caught. It started in 2020. My scans showed lesions in my ovary and lung but didn't light up. In 2024 during a regular check up both ovary's were showing lesions. Had a hysterectomy and both were metastasized NET. Had a PET scan and found 2 more tumors in my liver. I am on Lanreotide currently for chemo. Have to tell you i'm not optimistic. I continue to have symptoms and like most people just want to feel better. So many questions like what is the new "feel better expectation' ? Will I ever have my old energy back. Anyone else out there in this stage of the illness?

Hello @vickihorseman and welcome to Mayo Connect. From your post, it looks like you have had quite a journey with NETs. I also have had NETs in the small intestine (or maybe mid-gut). My first surgery was in 2003, and my third surgery was in 2016.

With the kind of experience you have had, I would highly recommend a consultation with a NET specialist. Mayo Clinic has NET specialists at all three of their locations. Here is a link for information about appointments at Mayo Clinic, http://mayocl.in/1mtmR63. If for any reason you cannot be seen at a Mayo location, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Often, by reviewing your situation with a NET specialist, they can provide your current oncologist with the best treatment plan for your particular diagnosis.

Your question about a "feel better expectation" is difficult to answer as everyone's experience is different. It is dependent on so many variables that it is hard to let you know what to expect.

After three surgeries, my fatigue level is a factor. Surgeries of the digestive tract can cause problems with eating and often weight loss. Have you had any of these problems? A consultation with a registered dietician can be helpful if you experience problems with food or digestive tract problems such as diarrhea or constipation.

How are you feeling overall?

Appetite variable. Since starting provigil about 3 weeks ago, the overwhelming chemo fatigue has I,proved significantly

I’m right there with you having issues with fatigue and appetite. I just don’t have an appetite at all most of the time which I miss. This last 3 weeks haven’t been great but I expect the shot to get me going any day now. My dose is now every 3 weeks so let’s hope that helps.
Mostly I’m just tired and that sucks.
We will see what happens after the scan and a few more doses. Want to give it a chance to work I hope. If not I see much travel in my future 😁

Yes, I must admit that the fatigue is difficult! Lack of an appetite can also create problems simply because you don't eat enough.

I've had a couple of sessions with a registered dietician and that has been a great help. If your appetite doesn't improve, you might ask for a consultation with a dietician.

I look forward to hearing from you again. Will you keep posting with questions and updates?

I have my liver ablation this week. I’ll let you know how that goes.

Yes, please do that, @qbandoc1.

@qbandoc1, how did the liver ablation go?

I had haemocolectomy of the right colon 2 months ago. I was diagnosed with NET grade 1. The strange thing is that the lymph nodes and blood vessels were clear but there is metatasis in the liver. So how did the cancer cells reach there? I am suffering from acute discomfort due to gas and unsettled bowel movements despite walking, drinking water etc. How long does it normally take for the bowel to settle

Hello @bubbledalmia and welcome to the NETs discussion on Mayo Connect. I can understand why you question the liver metastasis given the clear lymph nodes and blood vessels. This sounds like a good question to ask the oncologist. Have you addressed that in a follow up appointment?

Regarding the discomfort, gas and unsettled bowel movements, that is also a good question for the surgeon during your follow up appointment. However, as I have had three surgeries of the upper digestive tract for NETs, I know that given you are only two months post-surgery, it might take some more time for your digestive tract to accept this new normal.

After any type of digestive tract surgery, small frequent meals, that are low in quantity as well as quality (low fat, broiled fish, chicken, veggies that are well-cooked) all part of the best eating plan. What type of eating plan have you had since your surgery?

If this continues to remain a problem for you, it might be wise to ask for a referral to a registered dietician. I have had two consults with a registered dietician post-surgery and those consults have been very helpful in my understanding of the best eating plan.

Have you considered seeing a registered dietician? Your surgeon or oncologist can most likely make that referral for you.