Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Hi, you have been through a lot, hoping you can find the answers you need. The Dr my husband sees is Dr Singla in Sacramento, CA.
Has your Dr done the 24 hour urine collection? That’s where the hormone shows up if there is tumor growth. Research on the NET research foundation. Many stories are people don’t ever find the primary source of the cancer. We were lucky that after an incidental hernia repair the PS was found, then they can look at the spread. My husband had no symptoms except hernia pain which was unrelated. Now after major abdominal surgery he has no symptoms, back to regular lifestyle. The Dr removed 2 ft of sm intestine, 15 lymph nodes, 1/3 of the liver, gallbladder and appendix. He had an epidural in for a week to combat the pain from surgery, was walking 1 day after. It’s been 6 months since his surgery. He has had 2 surveillance CT scans and blood work follow up. There’s a high chance it will return 95% but for now we take it one day at a time.
Hope that helps!

Thank you so much for your helpful response. Your husband sounds strong and you guys are a great team. My urine test was ok but i tested positive three times with the nettest from wren labs at the request of mayo Rochester.
I had for pet scans over the last several years and several abdominal mris. My next one is in October. It is a nightmare and I am burnt out from health issues!!!!

Hi Stevestenberg31
Your detail was very helpful and I am at a crossroads right now. I discovered my NETs on 03/24 by electing to have a full body MRI (no symptoms of anything at the time) and was told after every imaginable test that it was slow-growing. I am also in a Clinical Trial for Nets and my specialists are part of the NET group. 2 months after the last PET scan, I was rushed to the ER on 08/10 in immense pain and could hardly walk etc. They took more tests at the hospital and found multiple lesions in my Mets liver (originating in my SI) had grown significantly. I was sent home with a prescription for Morphine. I pushed for Lanreotide (Somatuline) quicker and just heard from my Oncologist on 08/25 that I would hear from the 'Surgical Liver Team' in 3 weeks and then it would take time if they would be operating.
My concern has always been the 'waiting'. Told it was slow growing and now it's not, told they have to monitor the drug first (for 3 months), but I am concerned about it spreading to my lymph or other organs. Any suggestions?

Wow, hang in there. My situation was that i had a blockage caused by the SINET. I went into the ER and requested an MRI or CTScan w/ dye. B/c my bowels were blocked they did the surgery the next day. Maybe your pain is from a blockage? I suspect i had a "partial" blockage for months. Have you lost weight? Can you not eat very much? If yes the situation might be similar. I too have NETs in my liver but the bloating and pain was from the SI blockage.

Hi
It's a shame that a blockage had to be the warning sign. I was never told of a blockage (although perhaps I could have intervention surgery much quicker) 😡. They sent me home with an update that my multiple Met liver lesions were rapidly growing. Also a prescription for Morphine. I had 1 injection of Lanreotide and it seems to calm it down for now. I have to wait months to find out if it has stopped the growth and my concerns are that I am in a great unknown until then. I am searching online for those that have had the product for some time and if, in fact, it was shrinking the cancer lesions. This would be the best hope for now. Thanks for your input. 🤗

Hello @ricki8

I certainly understand your concern and also your wanting answers sooner rather than later. Have you considered getting a second opinion?

I would highly recommend Mayo Clinic. They have NET specialists at all of their three locations. Here is information about obtaining an appointment for a consultation (if it is too far for you to drive, you might consider a virtual appointment). http://mayocl.in/1mtmR63

If a Mayo appointment is not possible, for any reason, here is a list of NET specialist throughout the country.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Once again, a virtual or in-person appointment might put your mind at ease regarding your treatment options.

Are you still having the "intense pain" that you mentioned? Are you able to eat or are you losing weight? These are all important considerations.

That is so kind of you, thanks.
I am in Canada and under a Clinical Trial for NETs with specialists in this field. I called around the world and the original time to get started was about the same. If I left Canada, they would not support me. I only became extra worried when it changed from slow-growing to fast-growing. The intense pain luckily got me in the E.R. where the change was discovered. I seem to be normalized right now with more energy than the last several years. It's so hard to know if I should push my oncologist and the surgical team to incorporate any surgery before they give me the blood work and another CT scan in mid Oct. I was hoping that someone else has a story that I can relate to. I did drop 20 unnecessary lbs., but seem to be holding.

Hello @ricki8

I'm glad to hear that everything seems to be normalized now and that your weight is holding. It is good that you are having more testing in mid-October. This should help your medical team see how your current treatment is working.

As I read through some of your previous posts, I see that you are getting injections of Lanreotide. This has been quite helpful for many members on Connect in controlling the growth of NETs.

Have you been able to tolerate these injections without too many side effects?

Thanks @helpful33250 (great name)
I just had my first shot of Lanreotide on 08/18 and yes, feeling more normal now. However, due to the wait to see any progress, my concern is that the cancer lesions in my liver may still be growing as they went from 'slow growing' to 'fast growing'. I was wondering if anyone had surgical intervention at this early stage (without any blockage). My surgical team is waiting and as I was the one to find my NETs and prove that the progression has changed to rapid growth, I am not sure if I should be pressing my Oncologist to move the system along.

Hi @ricki8

I understand that you have a lot of questions. Perhaps you can join us for the monthly Mayo Clinic support group that meets via Zoom on the first Thursday of each month. It meets at 5:30 p.m. EST. Look for the registration information that should be coming out soon. It's another great place to ask questions of others in the group. Many in the group have had similar NETs experiences as you have.