Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage, on July 1, 2022 I had the removal of a neuroendocrine tumor in the small bowel and one of the five nearby lymph nodes removed was found to be malignant. An Aug. 2 a Chromogranin A blood test was 102 ng/mL somewhat above the standard range. For a week after I was home from the surgery I had significant night sweats.
I had a PET scan with dotatate (Cu-64) on August 23, 2022. The radiologist noted that it showed “multiple small to borderline Cu-64 Dotatate-avid mediastinal and hilar lymph nodes, suspicious for metastatic disease.” An Aug. 25th Chromogranin A blood test was 81 ng/mL well within standard range. My oncologist offered to begin Octreotide injections. I decided to wait and to get a second opinion.
I chose to go to Dana-Farber Cancer Institute in Boston and a team there examined the original biopsy, all tests including the PET and thankfully reached a different conclusion. They saw only slight “uptake” of the radioactive marker in those lymph nodes, not the significant uptake that is usually indicative of NET cancer. Combined with my current lack of symptoms they noted that if a repeat PET scan in three months showed a similar result, I should have nothing to be concerned about.
A November 22, 2022 repeat PET scan with dotatate (Cu-64) was “similar to the prior exam, stable.” Both Drs. are very optimistic and I will have a follow up CT scan in six months. I feel fortunate and strongly recommend second opinions.
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Hello @beech18bob and welcome to Mayo Connect. I really appreciate you sharing your story about your experience with NETs. Your example of getting a second opinion is so very important. Almost every insurance will allow a patient to get a second opinion and your story shows just how important it is.
Since your surgery, have you had any problems with eating, diarrhea and/or weight loss? If you are comfortable sharing more, what type of surgery did you have? Was it invasive or laparoscopic?
My invasive surgery (I’m a relatively healthy 80 year old man) was for a small bowel obstruction on July 1, 2022. It was “laparotomy general surgery” (large incision). The surgeon removed a well-well-differentiated neuroendocrine tumor with a 1.2 cm greatest dimension. Tumor was also present in 1 of 6 lymph nodes. He removed 19 cm & 5 cm segments of bowel in a resection of distal jejunum.
Staging: pT2, pN1, pMx. I came home on July 10. For 6-8 days at home I had night sweats and then they stopped. I have had no other symptoms since then, no diarrhea, weight loss, eating or sleeping problems and no pain. I feel fine other than some arthritic back pain that isn’t new. Twenty-five years ago I had prostate cancer and a radical prostatectomy. I have been cancer free since then and remember as a PCa support group president advising newly diagnosed PCa men to strongly consider second opinions concerning treatment options. Fortunately I took my own advice or I might currently be undergoing unnecessary Octreotide treatments. I appreciate the NET Group postings as I have read them since my diagnosis and learned a great deal about NET. It's a very important service about this uncommon cancer.
I so appreciate your great narrative about your surgery and treatment for NETs. I'm also glad that you have found this forum helpful to you!
Yes, this rare form of cancer certainly creates a desire to know more about the personal experiences of others and to learn more about this type of cancer which most people have never hear of before.
I so agree with you regarding the importance of a second opinion! Glad to hear that you took that advice.
Is it OK with you, if I tag you to offer encouragement to others facing similar surgery?
Question for the group. I've just completed my radiation treatments and still have 2 more infusion cycles of chemotherapy. That should be completed by mid January. When can I expect my hair to regrow? Not really that vain just more of a curiosity question.
Might be worth starting a new discussion to ask your question about hair regrowth and when it might start after completing treatment. I suspect it's different for everyone (as always, right?).
Hello..I am 29 yr old boy from India diagoned with net tumor in small bowel and in metastatic net tumor in 70 percent liver.but my liver works well as per LFT result..i have symptoms of gas stomach pain vomiting..face become red, breathlessness ,dizziness and weakness while walking. 1.5 cm tumor small bowel is removed by surgery and currently I m recovering..can u plz advised what will be best treatment for my liver..chemo or nuclear medicine.
Hello @mukul123 and welcome to Mayo Connect. I see that you are looking for direction for treating your NETs. I understand you wanting to find the best treatment. Mayo Connect is a patient-to-patient support group but we are not medical professionals. If you would like to get a professional opinion from a Mayo doctor, I recommend that you contact Mayo Clinic for an appointment. Here is a link where you can get information on obtaining an appointment: http://mayocl.in/1mtmR63
If you look at some of the discussions in this group, you will see that there are now many treatments for NETs.
I would like to invite some Connect members who also have NETs, like @dbamos1945, @patrick031621, and @jenntx10, who have had treatments for NETs.
Have you had surgery for surgery for the NET in the small bowel? What plan of treatment are your doctors suggesting?
Thank you hopeful for this discussion. It answers many questions.
Yes i had small bowel surgery 10 days back.. currently m recovering for chemo..i lost 12 kg and now I m only 40kg .my haemoglobin, platelets are very low..my oncologist advised me for liver transplant in future and after 1 month i have to take oral chemo pills..can u all advised me some good drugs for chemo.
I hope everyone doing great! About a few days ago we were informed my wife has been diagnosed with Neuroendocrine Tumor. We are based in Atlanta , GA. There are not many options here as you know is a rare type. I'm worried and still haven't seen her general oncologist yet to hear what they say. They say she needs more tests. It has spread in multiple locations. They gave it number 8 and say it's not aggressive like number 20. They haven't been able to find the root. I'm thinking to move to places such as mayo or Anderson. Please advise.
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