My illness may be invisible, but I am not – Neuroendocrine Cancer


The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.  

Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person’s actual capabilities, and how they cope with their condition. 

I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. 

Growing invisibly inside me for years before making a vague announcement

I had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren’t as routine as I thought.  Sorry too late, I’m metastatic, and up to 50% of patients (depending on primary location) will be at diagnosis (so I’m not alone!). It’s very SNEAKY!

Click to read about this sneaky cancer

Imaging is very good at making things visible!

I mean, I look really good, I look really well, but you should see my INSIDESOne radiographer described my insides as a battlefield. 

Click to read

The fibrosis in my retroperitoneal cavity can’t be seen

Click to read about this weird issue

I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately, I had a surgeon who had operated on many NET patients and had seen this issue before.  After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting the retroperitoneal fibrosis surrounding these important blood vessels and managed 270-degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully).  That said, the abstract papers above have led me to believe that my retroperitoneal fibrosis is clinically significant.  In fact, I have spent the last 3 months worrying about some of it growing into the reach of important vessels and only just been given the all-clear (for now).

Oversecreting hormones (Syndromes) can also be invisible

Click to read about Hormones

There are many hormones involved with Neuroendocrine Cancer which is unique in that different types can result in elevated levels of different hormones, often more than one is involved.  Serotonin has caused fibrosis in my retroperitoneal area and is currently threatening important vessels. I don’t really need that right now!

Ongoing symptoms and side effects in competition with regular illness

I was showing symptoms of a Neuroendocrine Cancer syndrome known as Carcinoid Syndrome (currently) such as flushing and diarrhea and fatigue was probably there too, but these were thought to be something else or ignored (by me).  I don’t suffer too much nowadays other than the side effects of the disease or the treatment I’ve had or received.  However, I know from speaking to many patients that the effects of the various syndromes associated with Neuroendocrine Cancer can be pretty debilitating and oppressive to quality of life.  But much of this is handled inside closed doors.  You would not know if you bumped into this person in a shopping complex or cinema or holiday resort. 

These syndromes can be so strange and so weird, that they can be very difficult for patients, nurses, and doctors to treat. They can be a real ‘witch’s brew’.

Click to read about how syndromes can be disguised

Surveillance and treatment for life – no one sees that!

But I need constant surveillance, it’ll keep me alive. But no one sees me go through this once or twice (or more) a year. 

Click to read about Neuroendocrine Cancer surveillance

I might have succumbed to hypothyroidism – that’s invisible too

Another pill for life. I have a left-sided thyroid lesion and my treatment also messes with my hormone levels.  But you wouldn’t know to look at me. 

Click to read about thyroid issues

The risk of diabetes (another invisible illness) has increased. 

I have been in pre-diabetes once. My blood sugar often spikes, most likely due to treatment.

Click to read about diabetes and NET

Apparently, my invisible illness is a “good cancer

Click to read the “Good Cancer” blog

But I have a lot of be thankful for

Click on the picture to read

Sometimes it isn’t slow-growing, particularly for high-grade cases.  But this invisibility can also be applied to high grades, even poorly differentiated cases. I will continue to advocate for those types too:

Click on the picture to read

You may also enjoy these similar and related articles:

Things not to say to a cancer patient – click here

Shame on you! – click here

Things are not always how they seem – click here

Not every illness is visible – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

I don’t look sick, sorry not sorry – click here

You must be doing OK, you’ve not had chemotherapy – click here

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One thought on “My illness may be invisible, but I am not – Neuroendocrine Cancer

  • strangethomo

    Thanks Ronny, an interesting and , as always, informative read. My husband was diagnosed with stage 4 metastatic NET with fibrosis which was only spotted when a repeat biopsy shod rapidly growing, enlarged retriperotineal lymph nodes :-(. It really is a sneaky and evil disease. Thanks for all you do to informand keep us up to date.

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