Diagnosis Frustrated: How you were diagnosed with NETs?

@djchambers
My Daughter has been newly diagnosed with NRT. Her tumor was found when her gastroenterologist decided to search a bit more after precancer cells were found in a previous colonoscopy a few years prior. She had gone in for a routine colonoscopy at age 45. Last week she had surgery to remove the tumor. She will meet with her doctor for treatment planning next week. We are looking for first hand experiences to know what to expect going forward. So far everything I've read in these forums has been helpful. Thank you all.

Good luck to her. There’s lots more info to get, such as grade and whether or not well differentiated. Also, tests will reveal what treatments are likely to be most effective. It’s a journey. The good thing they know a lot about this type of cancer and there are a lot of treatments. I think the doctors at Mayo are most knowledgeable.
I’m thinking about her, you and your family.

Manabearpr71: NRT? Are you referring to NET cancer? If your daughter gets Pathologist’s biopsy results identifying Neuroendocrine Carcinoid Tumor she will have the specifics (Ki67%, Stage, Grade) plus specific Samatostatin receptive scans i.e. Gallium 68 PET scan, Eovist MRI, 24hr Urine Lab Test, etc. to allow best treatment decision for her rare cancer. These tests will show needed info on each NET tumor (location & size) and hopefully it is considered the “primary” and not metastasized; however, if it has metastasized it will be called Stage IV! This is an advanced stage, but different than other cancers! Don’t freek out - you will meet many many NET stage IV cancer patients in the future who are living with this cancer and consider it more “chronic” in nature. We with NET Mets have successful treatments, but realize it can surface in another area of our bodies. We are vigilant and proactive -and most important obtain best NET specialist; whether surgery, Radioligist Intervention, Nuclear Medicine - NET reacts differently and success demands experience!
I would NOW have a second opinion from NET Pathologist to verify correct diagnosis; followed by consultation with a NET specialist Medical Oncologist. NET cancer is different animal from the other cancers, usually slow growing and there are various successful treatments. Each NET patient can react differently to treatments. In my case, I was started on Lanreotide injection every 28day to help control symptoms and perhaps tumor growth. Repeat scans will be ordered throughout your daughter’s care.
After you have diagnosis I would check on Internet for NET support groups. There you will find specific as well as general info about this disease - I suggest you and your daughter become familiar with the terms used and her diagnosis prior to finding a medical Oncologist, whether a specialist or not. They will hopefully be able to relate general info and if they choose, begin your Lanreotide shot to help with symptoms.
I am sorry this has entered your life, however hope I have relieved some of your anxiety. My Mayo peers are very helpful.
Best to you, Bette. dbamos1945

@mamabearpr71, welcome. I hope you saw the helpful replies to you from @djchambers and @dbamos1945.

How did you daughter's meeting with the doctor go? What is the treatment plan? How are YOU doing?

@colleenyoung thank you. I had not seen the other messages. I went looking for them though. They contain helpful jnformation indeed. Her surgeon's office has referred her to an oncologist for follow up. She is scheduled in a couple of weeks. I will ask about her oncology report for more information. She almost back to pre-surgery activities and planning to return to work after the holidays. I have mentioned seeking a second opinion. Right now she is @dbamos1945 feeling optimistic after meeting with the surgeon and focusing on recovering from surgery and being present for her young daughter. Thank you @djchambers and @dbamos1945

@mamabearpr71
My husbands NEC was found after it had metastasized to his liver but it took 10 months and a trip to MD Anderson to find the source tumor in his pancreas. His initial treatment was Lanreotide, then they mapped vessels to largest liver tumors and hit them with something to shrink tumors and also block blood vessels. When tumors started growing again he started two different oral chemo pills. This year tumors again started to grow so he is on 4 radiation treatments. Last one is next week, and we are up to 5 years and 5 months since diagnosis. I was disappointed when the scan after 6 months showed no shrinkage but his oncologist said wait until he’s had all 4. I know I’m not using all the technical language but without going to my inch thick notebook, I just don’t remember. He has not seen a net specialist as there are none in Arkansas…not 5 years ago and not now. Even when we visited MD Anderson there were no NET specialists back then. I’ve learned as much as I can about this disease, for a lay - woman. I recommend attending a NCAN conference. First learn the terminology as it’s important. Grade, differentiation, K something or other. This will help you learn more at conference. Also, I initially attended the online meetings offered by NCAN. Much relief when I heard some grade 4 patients are doing well after 20 years.

Best of luck. I’ll pray for your daughter and you. If you can see a NEC specialist you’ll be in good hands.

@mdethardt thank you.

Have they done a colonoscopy to see if there are NETs hanging out in the small intestine? There are other scan that can be done that might be able to locate it. I go to the Mayo Clinic in Rochester, Minnesota where they are considered a NET Clinic of Excellence and they have all sorts of different scans that can find NETs. Do you have the ability to travel?

@mdethardt
I can understand your confusion as there is much to understand and it differs for most of us in reactions and results. You are not alone.

To understand it better, I would suggest you sign up to the online meetings, zooms etc. Here is one.........Neuroendocrine Cancer Foundation
PO BOX 370466
Denver, CO 80237
303-589-0515
http://www.ncf.net
The next meeting is Jan. 21

I too have an Oncologist, but they are apprised and should get info from the NET specialists, so you should be in good hands.
There is a lot of good info. out there. and as NETs has become better known, there will be more discoveries for a longer life.

The best to your husband,
Ricki

I have never had symptoms. My NET's were discovered accidentally during a CT scan when they were looking for a possible hernia. Fortunately, the first specialist I saw was a surgeon at Michigan State University who recognized the NET's immediately. A blood test showed chromogranin A and serotonin levels many times normal. I'm now seeing an oncologist at University of Michigan Health - Sparrow, who has me on monthly Octreotide injections. After two injections, chromogranin A and serotonin levels are near normal. I've had MRI's, CT scans, PET scans and a liver biopsy to confirm the surgeon's original diagnosis and still don't have symptoms. Based on what I read here, every NET case is unique. There is simply no set of rules on diagnosing them. All you can do is work through your primary care physician and keep pushing for tests from specialists until the answer appears. I was very fortunate with the surgeon at MSU, as there are no NET specialists near here.

While the disease appears to have been handled appropriately, the co-pays are killing me. We found an organization called Ameripharma through this forum. Ameripharma supplies the Octreotide directly to the hospital, and appears to have eliminated the $1200 co-pay for each injection. The scans and MRI's are running in the $500-$800 range and the hospital has worked with us to arrange payments.