1. < Neuroendocrine Tumors (NETs)

I recently had surgery to remove NET in small intestine

Posted by hans051275 @hans051275, Feb 12 10:13am

They did a rt hemicolectomy and small bowel resection. They also did a wedge resection of my liver. They removed all of the tumor. Liver pathology came back clear. What concerns me is 7 out of 20 lymph nodes came back positive and they are telling me there is no treatment. They said high reoccurence and to just do scans and lab work every 6 months. Is this true no treatment just wait for reoccurence???
--Well-differentiated neuroendocrine tumor, grade 2.Tumor is 1.8 cm in greatest dimension.
Lymphvascular invasion is identified.
Perineural invasion is identified.
Number of lymph nodes examined: 20.
Number of lymph nodes involved: 7.
Maximum size of metastasis (glass slide measurement): 4 mm

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 12 7:42am
In reply to @sanarpin "Stay positive, I had 15 years ago nec in my small intestine, surgery sucesfully but secondary..." + (show)
@sanarpin

Stay positive, I had 15 years ago nec in my small intestine, surgery sucesfully but secondary effect Diarrea, since 4 years ago found liver cáncer inoperable, treatment lanreotide injection per month and 4 cicles of PRRT LUTHATERA-177 cancer stable, two years ago breast cancer small tumor test.. estrogen positive all hhis cancers was about hormonal teraphy. You can found experts in PRRT. I am in Houston and Excel Diagnostics apply me 4 doses of Luthatera, finish 2 years ago, now is a little bit grow one tumor and have two more sessions of Luthatera, but I am waiting for prrt Alphamedix to be approved for FDA. But I never give up snd I feel very well

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Hello @sanarpin and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum and are sharing your experiences. Shared patient experiences are so helpful when you are dealing with cancer and especially a rare cancer like NETs. It sounds as if the treatments have been helpful to you.

I had my first surgery for NETs over 20 years ago and have had two more surgeries since then. While I've never had carcinoid syndrome, I have had weight loss and a poor appetite. At this point, surgery has been the only treatment that I've needed.

I'm glad that you said, "But I never give up and I feel very well." How is your appetite, have you lost weight?

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Apr 27 10:15am
In reply to @jlsgt "This is the article I found and referenced. I don't know about the actual study. https://www.everydayhealth.com/gastroenteropancreatic-neuroendocrine-tumors-gep-nets/" + (show)
@jlsgt

This is the article I found and referenced. I don't know about the actual study.
https://www.everydayhealth.com/gastroenteropancreatic-neuroendocrine-tumors-gep-nets/

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Thanks for sharing. There is a lot of great information here. I am grade 2 pnet stage 4 and have been on chemo for over 2.5 years. It is working for me. We all react differently to the cancer and treatment unfortunately. It is a bit of trial and error at times to figure out what works for each of us.

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jlsgt | @jlsgt | Apr 27 6:49am
In reply to @tomrennie "Where can I read the study that you referenced? Thanks" + (show)
@tomrennie

Where can I read the study that you referenced? Thanks

Jump to this post

This is the article I found and referenced. I don't know about the actual study.
https://www.everydayhealth.com/gastroenteropancreatic-neuroendocrine-tumors-gep-nets/

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1 reply
Mentor
Turkey, Volunteer Mentor | @tomrennie | Apr 26 11:47pm
In reply to @jlsgt "In general terms it seems the slower your cancer grows, the less effective chemo would be...." + (show)
@jlsgt

In general terms it seems the slower your cancer grows, the less effective chemo would be. Therefore, many NETs patients grade 1 or 2 are not candidates for chemotherapy.

I believe you can have a completely clear PET scan and still have Neuroendocrine cancer. Dividing cancer cells are very small. There is no known cure for NETs. My Oncologist made a great point when he said " I don't use terms like cancer free, that's not real". On a positive note, it can be very slow growing and there are drug treatments that are affective in stalling this cancer for many.

Found this info on the net about using chemo at http://www.everydayhealth.com

Chemotherapy Chemotherapy uses drugs to kill cancer cells. It isn’t generally used for tumors that are grade 1 or 2, says Kim, but for the more aggressive grade 3 tumors. According to a study, more research needs to be done on chemotherapy’s effectiveness in grade 3 tumors, particularly new chemo combinations or chemotherapy combined with other treatments. Among the many chemo drugs used to treat GEP-NETs are streptozocin (Zanosar), doxorubicin (Adriamycin), etoposide (Vepesid), dacarbazine (DTIC-Dome), fluorouracil (Adrucil), and cisplatin (Platinol). Some of these drugs are given in combination.

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Where can I read the study that you referenced? Thanks

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1 reply
kevinmonroemi | @kevinmonroemi | Apr 26 5:17pm
In reply to @jlsgt "In general terms it seems the slower your cancer grows, the less effective chemo would be...." + (show)
@jlsgt

In general terms it seems the slower your cancer grows, the less effective chemo would be. Therefore, many NETs patients grade 1 or 2 are not candidates for chemotherapy.

I believe you can have a completely clear PET scan and still have Neuroendocrine cancer. Dividing cancer cells are very small. There is no known cure for NETs. My Oncologist made a great point when he said " I don't use terms like cancer free, that's not real". On a positive note, it can be very slow growing and there are drug treatments that are affective in stalling this cancer for many.

Found this info on the net about using chemo at http://www.everydayhealth.com

Chemotherapy Chemotherapy uses drugs to kill cancer cells. It isn’t generally used for tumors that are grade 1 or 2, says Kim, but for the more aggressive grade 3 tumors. According to a study, more research needs to be done on chemotherapy’s effectiveness in grade 3 tumors, particularly new chemo combinations or chemotherapy combined with other treatments. Among the many chemo drugs used to treat GEP-NETs are streptozocin (Zanosar), doxorubicin (Adriamycin), etoposide (Vepesid), dacarbazine (DTIC-Dome), fluorouracil (Adrucil), and cisplatin (Platinol). Some of these drugs are given in combination.

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I had chemo I am grade 2 ki-67 7% stage 4 to liver as far as I know it s very common first treatment definitely not a cure though.

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jlsgt | @jlsgt | Apr 26 4:19pm

In general terms it seems the slower your cancer grows, the less effective chemo would be. Therefore, many NETs patients grade 1 or 2 are not candidates for chemotherapy.

I believe you can have a completely clear PET scan and still have Neuroendocrine cancer. Dividing cancer cells are very small. There is no known cure for NETs. My Oncologist made a great point when he said " I don't use terms like cancer free, that's not real". On a positive note, it can be very slow growing and there are drug treatments that are affective in stalling this cancer for many.

Found this info on the net about using chemo at http://www.everydayhealth.com

Chemotherapy Chemotherapy uses drugs to kill cancer cells. It isn’t generally used for tumors that are grade 1 or 2, says Kim, but for the more aggressive grade 3 tumors. According to a study, more research needs to be done on chemotherapy’s effectiveness in grade 3 tumors, particularly new chemo combinations or chemotherapy combined with other treatments. Among the many chemo drugs used to treat GEP-NETs are streptozocin (Zanosar), doxorubicin (Adriamycin), etoposide (Vepesid), dacarbazine (DTIC-Dome), fluorouracil (Adrucil), and cisplatin (Platinol). Some of these drugs are given in combination.

REPLY
2 replies
Mentor
Turkey, Volunteer Mentor | @tomrennie | Apr 25 1:21pm
In reply to @sanarpin "Yes, it is essential to have CT Scans every month and then every 6 months, and..." + (show)
@sanarpin

Yes, it is essential to have CT Scans every month and then every 6 months, and GALLIUM 68 scan, a lab test, and Possible lanreotide injection every month; you have to look for an oncologist expert in Neuroendocrine tumors. Chemotherapy does not work in this kind of cancer

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Where did you learn chemo doesn't work for this kind of cancer?

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kenb58 | @kenb58 | Apr 25 10:10am
In reply to @stevestenberg31 "Did they remove the cancerous lymphnodes? I had SI NET removed along with 7 lymphnodes removed..." + (show)
@stevestenberg31

Did they remove the cancerous lymphnodes? I had SI NET removed along with 7 lymphnodes removed and GB. Now Lanreotide every month and MRI every 3 months. Feeling good.....2 yrs out. I wish you well.🙏

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Yes, the 8 Lymph nodes were removed. No injections planned at this time. Scans and blood work only

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stevestenberg31 | @stevestenberg31 | Apr 24 5:59pm

Did they remove the cancerous lymphnodes? I had SI NET removed along with 7 lymphnodes removed and GB. Now Lanreotide every month and MRI every 3 months. Feeling good.....2 yrs out. I wish you well.🙏

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