NET found by colonoscopy. What to expect and how should I approach

Dear Mike

I was diagnosed with PNET on my pancreas on March 21, 2023. My PNET is 1.7 cm. Some NETs can be aggressive. I got help for the Pancreatic Action Network (www.pancan.org). I would check with the American Cancer Society at http://www.cancer.org. PANCAN provided me with a significant amount of information on my tumor. They also provided me with a list of doctors (oncologist, surgeons, radiologists etc) that specialize in high volume treatment of PNETs. I am told that NETs are a specialized kind of cancer and it is recommended that you find a specialist who treats and diagnoses this type of cancer.

My PNET was found when I was having a routine CT scan in by belly in late January 2023. After an MRI, Endoscopy Ultrasound and PET CT scan, I was confirmed to have a PNET that is in its early stages, it is well differentiated and localized in my pancreas. I live in New Mexico and I went to the Mayo Clinic in Scottsdale/Phoenix. The Mayo ran these tests within two months of my initial CT Scan. In New Mexico, I couldn't get in to see a GI doctor for at least 3 months. I didn't want to wait and I'm glad I didn't. I have peace of mind and treatment plan.

My oncologist is very good and specializes in PNETs as well as my surgeon. Both of them are at the Mayo Clinic. They devised a wait and watch treatment plan for me for about six months. Then I will retest. My doctors tell me that a PNET is a rare form of pancreatic cancer that is very slow growing. If I have to have surgery, my surgeon is very experienced. She performs 4-5 or more of these surgical procedures a month.

I would recommend that you see a specialist in a high volume Cancer facility like the Cleveland Clinic, Mayo Clinic or somewhere similar and get a diagnosis. Good luck.

Fabian

Hello @mikecincy and welcome to the NET Support Group on Mayo Connect. You are asking some good questions, which is very important when dealing with a NETs diagnosis. Most of us with NETs would say, "yes" to your question about having a consultation with a NET specialist after a diagnosis. While there are probably many good oncologists in your area, most of them probably do not have the specialized training with NETs that is important to all of us with NETs. Here is a list of NETs specialists throughout the country. I hope you can find one near you, but if not, seeking a phone or virtual consultation with a NET specialist would be most helpful.
Several of the doctors listed are from the Mayo Clinic facilities in Minnesota, Florida and Arizona. As you know, NETs are a rare form of cancer, and you deserve the best help possible.

--Find A Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Your question on the Ga-68 Dotatate PET is a good one. It is the best type of scan to find NETs. As you know, NETs are usually very small and not easily detected by MRIs and/or CT scans. I have had three surgeries for NETs in the upper digestive tract and the first one was found incidentally during an upper endoscopy. Here is a link to information on this specific scan. I think you will find it most helpful in understanding why this scan is recommended. As a general rule, these scans are found at major medical/cancer centers, but probably not in smaller hospitals.

As a general rule, it is important to be as proactive as possible when you have a NET diagnosis. Learn all you can from reliable internet sources such as the Carcinoid Cancer Foundation website as well as Mayo Clinic. Here are some links.
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
--Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/diagnosis-treatment/drc-20351044

I would encourage you, as most NET patients would, to learn as much as you can, find the best possible medical team and keep following up.

What other concerns do you have as begin your NETs journey?

Thank you Teresa for your advises and the comprehensive list of information! As mentioned in my reply to Fabian, I will try to schedule a NET specialist at OSU first, but keep my options open to Cleveland Clinic if any needs not met. The Ga-68 Dotatate PET is a key factor to me, but I don't know at this moment if either locations have this instrument.

Hi @mikecincy,

I'm glad to read your reply. The list of NET specialists, (in my post above) lists some in Kentucky. As a resident of Cincinnati Ohio, I'm not sure if your insurance would cover a consultation there, but it might be worth looking into. Also, of course, Mayo Clinic has many great NET specialists at all three of their locations (Minnesota, Florida and Arizona).

I look forward to hearing how you are doing. Will you keep in touch here on Connect?

Thank you Fabian for sharing your story and insights! It is clear to me now that I need to take actions on my own instead of waiting for my next appointment with the GI doctor. I read through all the information on http://www.cancer.org about NETs and they are also very informative to me.
I debated between OSU or Cleveland Clinic, each of them has five NET specialists based on netrf.org, but decided to try OSU first mostly because it is a lot closer to me (1.5 vs. 4 hours).
I just reached out OSU and my GI doctor, and OSU is waiting on my records from my GI doctor, and they will review my records and get back to me.

Called OSU and my GI doctor office today, and requested my records been sent to OSU cancer center, and they will get back to me after they reviewed my records.
NET specialist Lowell Anthony at Lexington KY has mixed reviews, but he can be a backup for me as well. I will see if I need to go Mayo Clinic in the future.
Yes, I will share my journey here.

I have my appointment set with a NET specialist at OSU James Center on July 5. Although I have many questions to ask, but what are they important that I should not miss? My understanding is that this is a one-hour consultation.
A quick recap of my case, first colonoscopy screening on May 24, 2023, and biopsy revealed that I have NET on June 2, next endoscopy with ultra sound appointment with my GI doctor on Aug 8.
Encouraged by this group, I am seeking a NEC specialist and have found there are a few options and the closest one is in Columbus OH (OSU James Center).

Hi @mikecincy,

I'm so glad to hear that you have an appointment with a NET specialist. That is great. Taking the initiative and being proactive is important in dealing with this rare disorder. From your post, I'm getting the impression that you are wanting to know what questions to ask.

Is my understanding correct?

We have lots of members with experience in meeting with NET specialists and probably can help you formulate your list of questions such as @tomrennie @dbamos1945 @fabiant @pavlina60 @vinnie694 @kim1965 @californiazebra just to name a few.

Here are some questions that I would personally want to ask at an initial meeting with a NET specialist:

I would ask about the doctor's experience in dealing with NETs. How long has he been working with NET patients, etc.

Was a Ki67 stain done on the biopsied tissue? If not, please run one. (The Ki67 stain is a specific type of examination of the biopsied tissue that give the doctor a lot of information. If this was not done when the biopsy was originally taken, it is my understanding that the new specialist can request the slides and do this type of test).

What type of treatment(s) are available for this NET?

What follow up tests would you recommend?

I'm sure that others will have more suggestions for your list of questions. These are just a few that came to mind.

Thank you Teresa! You are spot on on my intension.
The Ki67 was done and found to be Ki-67 proliferation index is < 3%. (here is the full description on the report - MicroScopic Description: Immunohistochemical stains were performed to characterize the lesion. The tumor cells are positive for Synaptophysin and focally positive for CytoKeratin AE1/3C. Chromogranin stain is negative. Ki-67 proliferation index is < 3%. The mitotic count is < 2 mitoses per 2 mm2. No necrosis is present. The overall morphology and immunostaining profile support the diagnosis of well-differentiated neuroendocrine tumor, WHO grade 1 of 3. All controls show appropriate reactivity.)
Mike

Hi Mike @mikecincy

Sorry to hear you've joined the NETs club. It looks like you're doing your due diligence! Great!

LACNETS.org is another great NETs organization that provides lots of posted presentations from NETs specialists and other resources.

Teresa already provided lots of good questions. In addition to how long the specialist has worked with NETs, ask what percentage of their patients are NETs and more specifically how many colon NETs patients they've had. My team handles NETs but more non-NETs.

Since OSU is not close to you, you might ask if you can have virtual visits in the future when no physical treatment is required. I do that with my UCLA team. So convenient. I also have my octreotide shots through my breast cancer oncology office a mile from me even though the ULCA lung NETs team is ordering them. They coordinate with my local breast cancer team for my convenience.

What are the goals and side effects (short-term, long-term) of each treatment? Does it stop tumor growth, reduce symptoms, etc.

They may ask about carcinoid syndrome symptoms. Research the symptoms so you can think about which ones, if any, you've had, the severity and for how long. That may affect the treatment plan.

How will they monitor your NETs? Scans? Labs? How often? Where? My UCLA team only wants me having scans at a UCLA facility because they believe they know what to look for more than my local facilities. It's best to be consistent about where you have the scans so they can compare results to past scans.

I hope you hear a lot of positive news at your consultation. I have lung NETs/DIPNECH and the 50+ tumors are very slow growing (Ki-67 2%). The octreotide injections have really helped my respiratory symptoms. I don't know the specifics of colon NETs, but as you've probably heard everyone say, NETs is a marathon, not a sprint. It's treatable. That suggests we'll be around for a long time. Blessings, Zebra