Neuroendocrine Tumours (NET)
Paraneoplastic syndromes are a group of rare disorders that are triggered by an abnormal immune system response to a cancerous tumour known as a “neoplasm.”
Paraneoplastic syndromes are thought to happen when cancer-fighting antibodies or white blood cells (known as T cells) mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older people and are most common in individuals with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to the tumor being discovered.
These symptoms may include difficulty in walking or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo or dizziness. Paraneoplastic syndromes include Lambert-Eaton myasthenic syndrome, stiff-person syndrome, encephalomyelitis, myasthenia gravis, cerebellar degeneration, limbic or brainstem encephalitis, neuromyotonia, opsoclonus, and sensory neuropathy.
There’s a paper from 2010 (republished in 2020) which has outlined some of these issues in relation to NETs (A type of Neoplasm). They suggest that paraneoplastic endocrine syndromes are a secondary complication with certain types and certain hormones. Many of these connections are already known, such as Cushing’s syndrome, hypercalcemia, hypoglycaemia. But it can be the knock-on effects of these conditions which can potentially lead to other issues discussed. See below for relationships to Neuroendocrine Carcinoma (NEC). As you might expect, some of the NET epidemiological info is out of date in the paper but the research is interesting.
Read more here.
Neuroendocrine Carcinoma (NEC)
But it’s not just about NETs, one particular Neuroendocrine Carcinoma (NEC) is known to have this effect too.
What paraneoplastic syndromes are connected to small cell lung cancer?
Includes the following:
- Syndrome of inappropriate antidiuretic hormone secretion (SIADH)
- Ectopic Cushing’s Syndrome (ECS)
There’s also the risk of neurologic paraneoplastic syndromes.
Read more here.
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I stumbled upon this information searching for an answer of why my husband was slurring, confused, falling asleep every five minutes, staring at the floor for 20 minutes, glassy eyed, anxious and memory loss.
Unfortunately, we moved to a state (respectfully, I will not name which state) no one should live, from Chicago where he had a NETS team. His cancer has metastasized to his liver. Moving here and trying to get treatment has been challenging. Now, with Covid it’s a complete shitshow. He was traveling 500 miles to see his medical oncologist and IR. Although experts in their respective fields of NETs, they are more focused on their research. We just stopped called them, and are moving back to Chicago. We have already been in touch with the NETs team there.
It’s been difficult to find support where we currently live. After I had to make a two hour trip to a hospital where they do no more than keeping the patients alive so they can be discharged, he told me if he gets demented and starts foaming at the mouth DO NOT take him to a hospital here. Kinda funny, but it’s really not.
We are hoping to get him to Chicago next week after his case is brought before the tumor board on Tuesday.
I enjoyed reading your story. Although his condition is very serious, I have hope the docs in Chicago can squeeze a little more life out so he can retire properly and enjoy his hobbies.
Blessings,
Juliette
amazing story and I wish you both the best on your struggle to get proper care. And a better life. Take care please
Ronny,
I’m happy to see this. While my NETS are sleeping, I have had many other issues, aka autoimmune like, and was put on low dose steroids to keep things calm. I spent 3 years post surgery miserable and searching for newest all awhile thinking the NETS were the issue.
The rheumatologist suggested paraneoplastic syndrome could be a possibility.
Seems to be a catch all diagnosis however it gives a direction to keep issues under control, at least for me. Currently going down the path of myasthenia Gravis for the 4th time. But I think I just have a super immune system that is keeping the NETs at bay.
I look forward to reading more. Thanks, Theresa