r/neuroendocrinetumors

Hey guys, just wanted to update everyone. My spouse had his first post-op appointment on Monday with both his surgical oncologist and medical oncologist. Thankfully, his incisions are looking great, and he isn’t having any issues with the healing process. He’ll have one final post-op appointment in a few weeks.

After that, we met with his medical oncologist. Due to the amount of lymph node involvement, even with the total resection, they want to monitor him more closely using the Signatera residual disease test. Honestly, I had never even heard of this before. Reading through the pamphlet they gave us, it’s amazing how much cancer monitoring and treatment have advanced since my dad passed away from cancer 15 years ago.

The plan right now is for him to have the Signatera test every 3 months for surveillance, along with full bloodwork and CT scans every 6 months. So, unless they find something concerning on this first round of Signatera testing and the upcoming CT scan, we won’t have another round of appointments and testing until November, which is exactly what we’re praying for.

All of his bloodwork from Monday has already been posted to his account, except for the new Signatera test, and his Chromogranin A has decreased by over 40% in the last 3 weeks. From everything I’ve read, that seems really promising.

Another encouraging thing is that since surgery, his blood pressure has completely normalized. Before the diagnosis, they believed the high blood pressure was related to the stent placement he had after a tear from an accident, but his oncologist explained that hormone-releasing NETs can also cause elevated blood pressure. He was also severely anemic all winter while we were trying to figure out what was going on, and he needed multiple transfusions. Still, now all of his vitamin and mineral levels are finally back to normal as well.

I’m trying very hard to stay optimistic, but having been down this road before with different cancers, it definitely stays on my mind constantly. Still, we’re taking the good news where we can get it and hoping things continue moving in the right direction.

Hey everyone. I'm 45 and I was having some LUQ pain in my abdomen that turned out to be a pNET. It was originally 1.9cm but the CT scan I just had showed it to be 2.4cm by 1.5cm and located in the anterior body of my pancreas and that is "ring-shaped arterial enhancement" in composition. The good news was that my early tests (MRI and EUS) show no lymphadenopathy and the Ki67 shows 1% nuclear staining. So, I'm certainly grateful for the somewhat positive findings so far.

I have another three weeks until my surgery consult. I'm near Portland and have heard great things about OHSU as well so I'm seeking a second referral to them to get two opinions. However, I'm somewhat confused from my research on when a partial pancreatectomy is required versus an enucleation procedure. I'm hoping that I'm a good candidate for enucleation because I would love to keep all of my pancreas if that can be safely done. I'm curious if you guys might impart me your collective wisdom on what I should understand going into my consult about what will decide which surgery type is going to be required.

Too much reading has got me worried about what losing half or more of my pancreas could mean for my long-term health because I have two kids I want to be able to be healthy for. I'm at this place where I can do a lot of research but really have to wait and hope what the doctors say, so any input those of you who have been down this road can share would be super helpful in helping me collect my thoughts and have helpful questions and input when I start meeting with the surgeon(s). Thank you all for banding together to form a community to help each other and people like me. It's been surreal to go in a short month from ignorant bliss to questioning whether I'd be here in the future. It's helped me really appreciate what I have and be grateful for the good news I've received so far, even when the news is objectively less than ideal.

I'm anxiously waiting for my next scans, but they found and removed a 20mm NET during a routine colonoscopy. I was referred to oncology but I am super nervous because of the size =( the Ki67 was 2%

Hi there. I was diagnosed with lung primary, 3-14% KI67 index, numerous mets to liver and pelvis.

Had six month CT with contrast scan and all are stable except one which has gone from 6mm to 10mm but this is potentially within variance limit for a scan.

I am considering taking CBD/THC oil for sleep but am concerned after looking at some online google AI driven articles that say it can cause growth. Has anyone else been warded off this?

I really apologize if this is out of touch and I’m trying to word it in a respectful way.

I’ve been struggling with my diagnosis for months now, naturally. I’m waiting on my first PET to determine if and where the cancer may have spread.

I really hate telling people about the tumor. I truly feel like a “fraud” for receiving sympathy when I’m not going through the stereotypical treatment. I guess a touch of survivors guilt too. I don’t feel like I deserve the sympathy when it could be completely inconsequential, just an incidental discovery. Especially since there’s still a bit of stigma that NETs are benign. I just feel so guilty going to an oncologist, having a “plan,” making use of the cancer plan and benefits from my job.

Has anyone else felt this way?

What is the average recommended or safe wait time for a PET scan for those who are symptomatic, and have had recent high CgA and 5-HIAA results? Are there any standards or guidelines. And where is the best place I should look for resources or clinical trials. I’m in Canada.

Bit of a background on me. I recently had a lung NET removed. It hadn’t spread to lymph nodes or anywhere else per the lymph nodes being removed after surgery and the dotatate scan a month before. It ended up being grade 2 / atypical (barely) with the highest ki67 being 5% and mitosis being up to 2. The pathologist and my oncologist both said the main reason it’s atypical instead of typical is that the mitosis goes up to 2 and not under 2, otherwise everything else looked good and typical.

The plan now is regular monitoring and scans with my general oncologist. She’s been fantastic so far and explaining things and has been very open and interested herself in further testing and second opinions. I had a Signatera test done recently that we’re waiting to come back, and she’s also referred me to genetic counseling just to explore and investigate more. This is with a great hospital system overall that’s been nothing but helpful and quick with everything. She’s also referred me to a lung cancer oncologist at the neighboring university research hospital for a second opinion which I’m excited about.

With all of that said, I’d still like to see an NET specialist, though there doesn’t seem to be any near me in St. Louis which is why my oncologist referred me to this lung cancer oncologist for the time being. Both oncologists seem great and seem to work with NETs a lot. My oncologist recommend Mayo if I want to see a NET specialist specifically, but travelling for that will be very inconvenient.

1. Does anyone know if you can do virtual appointments with Mayo’s NET department?

2. Does anyone have experience with UAB’s (Birmingham) NET clinic?

3. Does anyone know of or have experience with any others that can help done virtually?

Sylvester Comprehensive Cancer Center
In Florida? I am looking for a second opinion
I started treatment in WPB the doctor is good but he really never explained anything to me he put me on lanreotide shots he said it would probably be forever 😕 I looked for other options and this UM center popped up. Also does my actual oncologist could be notifed that I am
Looking for a second opinion? He said I am stage 4 based on a PET scan but nothing abnormal showed on my labs so I am
Very confused. Any input I will appreciate 🩵