Rosacea – the NET Effect


Rosacea The NET Effect

Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today.  It normally starts with a stinging feeling, an indication I’m about to experience some sort of inflammation. What eventually happens is something which looks like a ‘whitehead’ which I now know to be a ‘pustule’.  Sometimes there are multiples and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering but they tend to leave reddish marks which eventually fade.  Very infrequently, these pustules would appear on my chin.  After 18 years of the issue, my nose is slightly discoloured and more reddish than the rest of my face.

Shortly after I started experiencing this issue, a doctor diagnosed me with ‘mild rosacea‘. If this is a correct diagnosis, then I would appear to have Subtype 2 or papulopustular (acne) rosacea (see breakdown of types below).  I also have the minor irritation of a recurrent mild eczema inside my right outer ear which has run parallel to this issue (…. spookily).

For around two years, I was treated with a mixture of low dose oral antibiotics (tetracycline) and a skin medication known as metronidazole. This did clear up the issue but it always returned and I stopped the medication opting instead for a commercial product which I find works better.  It doesn’t clear it 100% but I’ve learned to live with it and it is a long-term chronic condition.  I looked at many Rosacea sites online and none of the pictures seemed to apply to me and I agree with my diagnosing doctor in terms of a ‘mild’ version.

I worked out early on that the triggers were stress, when ‘run down’, and too long in the sun. There were possibly others.  Stress was part and parcel of the work I was involved in and it was at a time when I left my life in the military after 29 years and started a second career in industry (often I think in hindsight, I may have been overly stressed at the life change without realising it).  Without any medical input, I decided to try to make sure I got sufficient vitamins and I now appear to get less coughs and colds then I used to.  I now try to stay out of the direct sun.  Other common triggers are listed on reputable sites andinclude alcohol, hot and cold weather, exercise, hot baths and spicy foods.

What is Rosacea

A common skin condition, usually occurring on the face, which predominantly affects fair-skinned but may affect all skin types in people aged 40 to 60 years old. It is more common in women but when affecting men, it may be more severe.  It is a chronic condition, and can persist for a long time and, in any individual, the severity tends to fluctuate. Rosacea tends to affect the cheeks, forehead, chin and nose, and is characterised by persistent redness caused by dilated blood vessels, small bumps and pus-filled spots similar to acne. There may also be uncomfortable inflammation of the surface of the eyes and eyelids.  I found this site to be a very useful Rosacea reference.

Rosacea is sometimes classified into 4 subtypes that may overlap:

  • Subtype one, known as erythematotelangiectatic rosacea (ETR), is associated with facial redness, flushing, and visible blood vessels.
  • Subtype two, papulopustular (or acne) rosacea, is associated with acne-like breakouts, and often affects middle-aged women.
  • Subtype three, known as rhinophyma, is a rare form associated with thickening of the skin on your nose. It usually affects men and is often accompanied by another subtype of rosacea.
  • Subtype four is known as ocular rosacea, and its symptoms are centred on the eye area.

What causes rosacea?  

The cause of rosacea is not fully understood. Your genetics, immune system factors, and environmental factors may all play a part. Factors that trigger rosacea cause the blood vessels in the skin of the face to enlarge (dilate). The theory that rosacea is due to bacteria on the skin or in the gut has not been proven. However, antibiotics have proven helpful to treat rosacea. This is because of their anti-inflammatory effect. Rosacea is not contagious.

Why is rosacea sometimes linked to NETs?

On certain sites and in certain texts about NETs, you will see mention of Rosacea, clearly as a misdiagnosis of someone who presents with flushing.  I started experiencing the sensation of NET related flushing in late 2009/early 2010 and I can honestly say this was a totally different experience to what I had with my mild rosacea. However, I don’t have the ‘blushing’ type of rosacea and I can see the presentational similarities.

Another issue commonly reported in both conditions is small visible blood vessels on the face, known formally as Telangiectasia or informally as ‘spider veins’ or ‘broken capillary veins’. This is quite common with erythematotelangiectatic rosacea (subtype 1).  I actually have at least two of these showing and this appears to be something I’ve only noticed since NET diagnosis and only in the last few years.  Interesting it says this is something normally caused by “chronic flushing” but I wouldn’t have labelled by flushing in that way. I have not felt any flushing since late 2010 after surgery and commencement of long acting somatostatin analogues.  Unless there has been something ‘sub-clinical’ going on, I’ve veered my minor issue towards long-term but mild rosacea as the cause rather than NETs.  Telangiectasia is mentioned in many NET texts including my own article “Neuroendocrine Cancer: A Witch’s Brew of Signs and Symptoms”

Histamine if often linked to both conditions.  Read about NET related histamine here and Rosacea histamine issues here.

Summary

I’ll be honest with you, I’m actually not 100% convinced I have rosacea as it has similarities with many other skin conditions. In fact, skin issues are pretty common with NET patients, some are actually directly linked to NETs including Merkel Cell Carcinoma,  pellagra (linked to Carcinoid Syndrome) and Sweet’s syndrome (linked to Glucagonoma).  In addition, many people develop skin issues as a side effect of treatment.  Read more here.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

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Neuroendocrine Cancer: No one gets it until they get it


Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community.  Some ‘get it’ but many don’t.  Most understand ‘Cancer’, they have real difficultly understanding ‘Neuroendocrine‘.  Despite how hard I try, I can see that some of them just don’t get it!

One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It’s a heterogeneous grouping of cancers ranging from some quite indolent versions through to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description, in addition to creating a disadvantage of awareness opportunities because of the use of incorrect cancer types, clearly many doctors and media organisations don’t ‘get it’ either!

Add in the symptoms caused by Neuroendocrine Tumours and their associated ‘Syndromes‘ and ‘Hormones‘, the external audience is now falling asleep or lost interest. Trying to explain why these diseases cannot be diagnosed earlier is also very complex.  “How can it be so difficult” many of them ask.

If you have managed to keep their interest and get onto the subject of living with the disease, it gets even more mind-blowing.  Non-stop surveillance, lifetime surveillance, permanent side effects of treatment. “No way” many of them remark.  The problem is that many people have a really simple outlook on cancer; something goes wrong, you get diagnosed, you get treated, you either die or live.  Simple isn’t it?

One group that normally ‘gets it’ is those who have currently got it, i.e. Neuroendocrine Cancer patients and their close families and supporters.    They may not ‘get it’ before someone is diagnosed and they may still not ‘get it’ once someone is diagnosed, but they eventually will ‘get it’. I have many people who ‘get it’ in my private group and on my main campaign sites.

Despite the difficulties, I’ll continue talking to those who have not yet ‘got it’ hoping to make them understand the disease.  I also intend to continue to help with the undiagnosed (some of these guys probably do ‘get it’ but just not yet formally ‘got it’).  I also want to help those at and beyond diagnosis who despite having it, don’t yet quite ‘get it’.

No one gets it until they get it. It shouldn’t be that way. 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


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