Anyone been advised to simply monitor a neuroendocrine tumor (pNET)?

@lindanet2024
Unfortunately, this is cancer
The biopsy would have provided stage and grade.
I suggest you see a Neuroendocrine specialist.
I hope all goes well

@lindanet2024

Here is an explanation of the old use of the term "Cancer like" which is outdated since it is a real malignancy. I have never heard a NET Specialist still use cancer like. Is the Doctor a NET Specialist working with a tumor board?

" ... Medical organizations have officially moved away from using the term "carcinoid". The World Health Organization (WHO) and major cancer societies now classify these growths as neuroendocrine tumors (NETs). ... The medical community's understanding of how these tumors behave has completely evolved.

The Evolution of the Term The Old Definition ("Carcinoid"): In 1907, a pathologist coined the German word karzinoide (meaning "carcinoma-like" or "cancer-like"). At the time, doctors mistakenly believed these tumors were benign because they grew so slowly.

The Modern Reality (Neuroendocrine Tumor): We now know that these are true, malignant cancers that originate in hormone-producing neuroendocrine cells. Even though they are often very slow-growing (indolent), they have the potential to spread, which is why the old "cancer-like" description is considered misleading and obsolete.

@lindanet2024 I would be asking to have it removed mine was a stage one NET and positive for Stas (spread thru air spaces) the surgeon didn’t believe it was cancer until the pathology report after. Anything else show up on your scans?

Dear Michaela,
Like others reporting here, My Pulmonologist sent me for Xrays and PetScan of my chest as I have COPD and he is worried about lung Cancer. Those tests found a 16 cm Tumor on the tail of my Pancreas on Oct. 5, 2023.
Having a good friend pass away with Pancreatic Cancer this scared the hell out of me, so I saw two different useless Oncologists before I saw a Transplant Surgeon who insisted I have a Biopsy as the only positive way of determining if it was malignant. Sadly the Biopsy was botched and had no results so we decided after six months that I was still alive, with no symptoms, that it was likely a PNET and we would simply watch it. Tests at six months and 18 months showed no growth. Another PET Scan at 30 months showed no growth, but did show a new second tumor that was missed a year ago, and this tumor has grown from 5 cm a year ago, to 13 cm today.
I am scheduled for a new biopsy on the new tumor later this month. My Point is that it is the luck of the draw with PNET's so make sure you get a biopsy as that is the only positive way to know what you have.
Good luck to you! Regards, Rick

@maeve115
Thank you so much for this!! I get this horrible feeling that the doctors are downplaying my condition; however, I'm a very optimistic person and the furthest thing from a hypochondriac you'll find! I just want the truth!!
I changed oncologists (didn't click and had no confidence in her), and in our final "Special" meeting, when truth came up, she acknowledged I had a 50% chance of survival -- after months of telling me "not to worry, its slow growing and won't kill you." It's already spread to my lymph system, and there are known nodules in my other lung as well.
"It's definitely not a carcinoma, but a carcinoid tumor." So I've been told.
Thanks again for your feedback!

@rdebeer I hope everything goes well with your biopsy later this month. Two inconclusive biopsies seem unusual. Are any of your doctors NETs specialists? A tumor that grew from 5cm a year ago to 13cm today is very concerning.

@tomrennie
Hi Tom, Thanks for your good wishes. I live in Las Cruces, NM and there is a good reason why NM is ranked dead last of the lower 48 for health care. First I saw two Oncologists who wouldn't even see me for about six weeks and I fired them both since my buddy who had Pancreatic Cancer was dead in four months. Here there is no sense of urgency. After that I saw a Surgical Specialist in El Paso, TX (45 miles away), who insisted upon a biopsy, which I had done by the Department Head at Texas Tech University Hospital, who didn't get a large enough sample to for the biopsy. I only went back for the second biopsy at the urging of my Surgeon and they screwed it up again and couldn't seem to find anything to test.
There are no NET Specialists in the entire State of NM, so I may have to drive 400 miles to Phoenix to see someone at Mayo Clinic. Even the PET Scan which was done a couple of times was read incorrectly the first time and a year later the 13 cm tumor was discovered after going back and checking the one year old scan. Up until now, (two years and nine months) it has been just good luck that the original tumor hasn't grown, but now bad luck that a new tumor has been discovered and has grown by 8 cm. I still haven't got the biopsy scheduled, but at least the new guy doing the biopsy has assured me that there will be a Pathologist present and will analyse the sample on the spot. Not sure what I can or will do if it turns out Malignant since my Surgeon says I am not a candidate for (Whipple Procedure?) surgery. I turn 82 years old this month. I suppose it is always worth a trip over to Mayo for a second opinion and to maybe slow down the growth.
Regards, Rick

@rdebeer I'm also in New Mexico and had a difficult time getting a clear pathology report on a NET in breast. As of four years ago, there was a NET specialist at UNM in Albuquerque, so you might check there. They don't automatically accept a case--you need to be screened. However, my info may be out of date and Mayo is a good option. If flying is an option, you might be able to avoid the long drive. Wishing you all the best. Healthcare is such a struggle here--it's good to have a a back-up option if you can.

Thank you for your note. I hope you received timely treatment for that NET.
My wife just had a mastectomy because they didn't find a very large mass
even though she had annual mammograms her whole adult life.
I think I will try the Mayo clinic in Phoenix if my biopsy comes back
malignant.