I am living with neuroendocrine cancer. A rare abdominal cancer (.5% of all abdominal cancers) and for those of you that know me to be the overachiever that I am – in this case – I am not even the “1 percenter” LOL


I have been diagnosed with 2 (yes, 2) primary site neuroendocrine tumors (cancer that is the same type but initiating in two separate places of my body that didn’t travel via metastistatic means) – such a rarity for even this cancer that there is NO documented statistical data. The only statistics we really have is for people with one primary site who generally find this cancer in their 60s. Yet again the overachiever.


But wait! There’s more! I also found out that I have Lynch Syndrome – a – yup you guessed it – a rare genetic syndrome that significantly increases my chances of getting colorectal cancers and some other ones that are suspiciously similar to locations for neuroendocrine cancer. So being the detail-oriented person that I am, my geneticist and I both researched the possibility of a connection between the two. And there are 2 other documented cases (She checked her sources and I reached out to NIH) – so NIH and the collective “they” believe there is a connection between the cancer and the genetic syndrome, but science just hasn’t proven it yet – or maybe the statistical math hasn’t. Well now that I will likely become the 3rd documented case I highly doubt that’s still enough evidence. Lol I always wanted to be famous and known for something – well this is my chance, because apparently my case is being presented at some annual genetics conference in California this year. Go me! Wondering if I can attend for free…lol.
Please understand that I DO have a cancer that is incurable on the one hand, but slow-growing on the other. I will likely NOT ever go through chemo because it is ineffective. The only way to prevent metastisization is literally playing whack-a-mole – finding and cutting it out. So that may mean unexpected surgeries.


I have a 96% chance of them finding more within the next 10 years – 80% chance of which will be in the first 5 years. My tumors are currently escaping standard scans. Which means it is possible I already have metastatic cancer that isn’t even showing in the scans. Lucky me! But I am full of positivity and don’t really dwell on all of that!
Understand that this will be my life going forward for monitoring alone:

  1. Trips to New Orleans every 6 months for 5 years and then once a year for 5 more provided no more cancer appears. New Orleans has a specialist (shout out to Dr. Woltering and the crew at Ochsner) and a special scanner that I am hoping will better detect my cancer. So Gallium-68 PET/CT scan, MRI of liver, CTs for abdomen/pelvis/chest, ultrasound of left kidney, more bloodwork, and I’m probably missing a test or two. Some of the testing involves medication that I am very allergic to and have to be pre- and post-medicated for which may cause an extended allergic response (often up to 1-2 weeks)
  2. Full colonoscopies with an alternating rectal ultrasound every 6 months – TMI I know but again lucky me
  3. Blood work every 3 months (which is already abnormal but up pops those pesky statistics, which means at least three data points so they won’t decide anything until 9 months from May) *sigh*
  4. Annual endoscopy
  5. Aquatic and “land” physical therapy – wait why you ask?! Because oh BTW I have weird neurological problems and pain such as neuropathy that MAY likely be another rare syndrome called Paraneoplastic Neurological Syndrome – just don’t use WebMD to look THAT one up.


All I can do is laugh at the irony of it all. I’m happy because I now finally have a great team of doctors, a monitoring plan that is aggressive, and awesome friends who listen to me complain way too many times for me to even listen to it myself!!! Bwahahahaha
So I am LIVING with this cancer. And probably with an abnormal sense of humor about it all.
That’s all for now…. Maybe I should start a blog.

Beth does have a blog on Facebook.  You can follow her at Living with Neuroendocrine Cancer (@LIVEwithNETs): https://www.facebook.com/LIVEwithNETS/.


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