NeuroEndocrine Carcinoma of Ethmoid Sinus is a condition that begins by mimicking sinus problems associated with a common cold, such as a blocked nose, sore throat and/or headaches, whose only real sign of existence is the fact it lasts longer than a common cold.
Many GPs identify the first symptoms of this cancer, such as those just mentioned (i.e. a bad cold that is difficult to get rid of), as Sinusitis (inflamed sinuses) for which they normally prescribe the anti-biotic Amoxilin. Sinusitis problems normally disappears within 3 weeks, especially when anti-biotics are used.
Your sinuses are the small, air-filled, cavities (holes/pockets of space) behind your cheek bones and forehead used to produce mucus. The same mucus that drains into your nose through small channels. With a sinus infection such as Sinusitis those small channels become blocked due to your sinus linings being inflamed (swollen).
A diagram of the various sinuses within the human face
When a GP detects your prescribed anti-biotic has not worked and your symptoms are getting worse, such as you getting lumps in your throat, neck and/or eye regions, your gp will normally refer you to a Neurologist. This is because they want to check if any tumors (tissue growths/lumps) have begun growing in your cheekbone and/or forehead cavities.
At this point you might just still have an infection that needs a stronger and/or different anti-biotic, but on the hand cancer cells might be growing and flowing through your bloodstream. This is one reason why Ethmoid Sinus Cancer only gets detected in its middle to late stages; because you can easily ignore and explain away many of its symptoms as 'common cold' winter symptoms or summertime symptoms such as a stuffy nose, hay fever and other heat related problems.
When I got the final diagnosis for my particular cancer the specialist (surgeon and oncologist) wrote words such as Incurable, Rare and Unfortunately Uncertain Of A Cure, amd told me there were only 100 or so recorded cases, my initial thought was "OH. They cannot help me. I am going to die very soon" and later "Why was I given such a rare disease?"; which was enough to make me breakdown in tears.
I had been very strong up until those split seconds of thought, even joking how unique I was to my girlfriend, but when it dawned on me (hit me like a ton of bricks) that no help cure-wise was available I must of panicked and gone into a mini state of shock. After that little cry it took me a few days for the realty to sink in that I had a rare form of cancer that would probably kill me sooner than later.
Like most people I quickly took to the internet to try and find answers to my various questions and to find out more about Ethnoid Sinus Cancer, even though in my case my oncologist said she could not find that much information and had to consult internal medical journals from around the world with Ethmoid Sinus Cancer being so rare.
In terms of my life expectancy (which is a common question on many cancer patients list of questions): All I found was that my life expectancy to live at least 5 Years was between 35% and 50%, which was realistically stating I could live anywhere between 1 and 3 years only if I were really unlucky. And hopefully live at least 5 years if all were to go well with my chemotherapy and radiotherapy treatments and I kept myself fit and healthy. Age was also a factor in terms of the risks of developing further complications.
The specialists (such as surgeons and oncologists) sit around a table with other authorities to decide what is the best way to treat your cancer. In the case of Ethmoid Sinus Cancer, in my case, they concluded they would treat it like a Lung Cancer simply because the lungs function like sinus (air) organs. The surgeons decided the size of my tumor (cancerous tissue growth) was too big, complex and dangerous to operate on and therefore referred my case to my oncologist who decided upon a combination of chemotherapy and radiotherapy treatments.
The reason I say do not believe the specialists is because 1) They never tell you everything about your cancer in terms of 'what happens if the radiotherapy does not work?', 'how long have, or will I have, to live?' and 'How bad is it really?' for example. 2) They keep a lot of information to themselves. I did not know my cancer was small cell for example until a junior oncologist slipped her tongue when I was asking her specific questions. My main oncologist was not keeping me informed of my blood counts (blood platelets). 3) In general they are too clincal and do not think you want to know things; not realsiing you can find out certain information from the internet.
The specialists also use words to protect themselves legally, which can actually scare newly diagnosed cancer patients. They use words like Rare, Uncurable and Uncertain Of A Cure.
Rare just means this cancer type is rare. In my case, rare to be in the Ethmoid cavity.
Incurable, like many other types of cancer, just means Ethmoid Sinus Cancer cannot be killed off completely but can be prolonged (slowed down). This is because in my case of Ethmoid Sinus Cancer it was classed as small cell, too deep at the back of my head and too complex for sugery whereby it cannot be wiped out completely. Yes, it might become undetectable for months or years whereby you are given a "clear" diagnosis, but in the future the cancer will come back; normally as a secondary cancer.
Uncertain Of A Cure just means the specialists are not 100% sure if their treatment plans (treatments) will work 100%, permanently; which in many cases cancer cannot be 100% cured, permanently. Most cancers will return in some shape or form later.
Although at this point it would appear there is not hope for me, if the combination of chemotherapy and radiotherapy treatments make my cancer undetectable and therefore put me into a remission (non-detectabe cancer) stage, hopefully for years, it is not all doom and gloom. There could be hope, especially with advances in technlogy and medicines.
The main things here are to keep a positive mind and stay mentally and physically active. Positive in terms of NOT letting yourself get depressed. Saying that, I always look at the absolute negative! I use it as a mechanism to expect the worse so that any good news becomes a bonus. I hate feeling positive simply because I believe it will make me too confident to the point good news will not happen. So overall I just keep a neutral mind and therefore do not think about my cancer at all. This is probably being a little superstitious, but it does work for me and has worked for me throughout my lifetime.