What is This thing?

The C word, the big C , Cancer. A word that carries a lot of weight and is surrounded by fear when heard but what is it really?

Cancer is a crab-  those who follow horoscopes and are familiar with the signs of the Zodiac know this but how did it get associated with a disease? Well it comes from the shape of tumuors. Hippocrates was a Greek doctor who lived from 460–370 BCE. He was the first person to use the word “cancer” in his writings. He used the Greek terms for crab – carcinos and carcinoma – to describe a tumor because it looked like a moving crab. Hundreds of years later, a Roman doctor named Celsus, who lived from 25 BCE–50 CE, translated the Greek terms into the Latin word cancer. The name stuck. 

© Hans Hillewaert

We’ve dealt with the etymology now let’s look at the biology. Our bodies are made up of cells which divide and grow and eventually die. Normal cells have a stop sign but in the case of cancer that signal is missing and you get uncontrolled growth and the cells simply don’t die. Usually they form into a mass called a tumour that grows and spreads into surrounding tissues and eventually into other parts of the body through the circulatory and lymphatic system. This is called malignancy which differentiates cancer from benign tumours which do not spread. The original tumour is the primary site, and the spread is referred to as metastasis, which can be local, meaning nearby or distant, spreading to organs far away.

This uncontrolled cell growth is caused by damage to genes inside our cells that control the division of our cells and can come from various sources. It can be genetic,tobacco, alcohol radiation, inflammation, viruses, bacteria, and other sources. Since it is a cellular phenomenon, it can affect anywhere in your body, so it is not really a disease you can point to a single cause for in every case; it is more like a family of diseases. A good overview of cancer is available in the video below.

There are over 100 types of cancer. Healthcare providers categorize them according to where they start in your body and the type of tissue they affect. There are three broad cancer classifications:

Solid cancers: This is the most common type of cancer, making up about 80% to 90% of all cases. This includes carcinoma that forms in epithelial tissue (like your skin, breast, colon, and lungs) and sarcoma that forms in bone and connective tissues.

Blood cancers: These are cancers that start in your blood cells or lymphatic system. Examples include leukemia, lymphoma and multiple myeloma.

Mixed: Cancers that involve two classifications or subtypes. Examples include carcinosarcoma and adenosquamous carcinoma.

I’ve explained the basic concept of cancer and now let me got into the specifics of my malady to illustrate how it works. Before I embark on this let me start  with the principle of “everybody’s story is different” which I will keep coming back to. Why? We are all unique and our bodies react differently and our outside circumstances vary as well so there’s no one size fits all explanation or course of treatment. Another factor that will come up is time as that determines what options are available. Now that I”ve got that out of the way I’ll dig in.

What I have is Nasopharyngeal Carcinoma and in particular squamous cell non-keratinizing undifferentiated subtype. As you can see, very specific even in the type it is and that has an impact on how it's treated. 

Nasopharyngeal refers to the location in the nasopharynx, right at the back of my nose where it meets the throat. 

Blausen.com staff (2014). "Medical gallery of Blausen Medical 2014". WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010. ISSN 2002-4436., CC BY 3.0 , via Wikimedia Commons

Carcinoma is cancer that forms in epithelial tissue. Epithelial tissue lines most of your organs, the internal passageways in your body (like your esophagus), and your skin. Most cancers affecting your skin, breasts, kidney, liver, lungs, pancreas, prostate gland, head and neck are carcinomas. In my case it affects the lining of that area.

Squamous Cell-Usually, squamous cell carcinomas form on areas of your skin that receive the most sun exposure like your head, arms and legs. Cancer can also form in areas of your body where you have mucous membranes, which are the inner lining of your organs and body cavities like in your mouth, lungs and anus.

Non keratinizing- Keratin is the tough, fibrous protein found in skin, hair, and nails. Some squamous cell cancers produce keratin (they "keratinize") – they form hard, pearl‑like structures. Non‑keratinizing means my cancer cells do not produce keratin.This is actually important because non‑keratinizing NPC is more strongly linked to the Epstein‑Barr virus (EBV) and tends to be more responsive to radiation and chemotherapy than the keratinizing type.

Undifferentiated - This means the cancer cells look very primitive – they don't resemble normal squamous cells at all. Under a microscope, they look like large, round, pale cells with big nuclei, often mixed with immune cells (lymphocytes). "Undifferentiated" doesn't mean it's less dangerous – in fact, for NPC, the undifferentiated subtype is the most common and the most radiosensitive (it responds very well to radiation).

From the description as you can see my story is looking up in terms of treatment and I’m holding onto that hope.

Now that I have described the disease I’ll go into the progression and staging. When I did staging of the disease I was given stage 3. What does that mean?

Every cancer has it’s stages and this one one is no different so i’ll go into it’s details which are roughly similar to others.

Staging of nasopharyngeal carcinoma is based on clinical and radiologic examination. Most patients present with Stage III or IV disease. This is because the symptoms usually present themselves then. The location is hidden and hard to detect.

Stage I is a small tumor confined to nasopharynx.

Cancer Research UK, CC BY-SA 4.0 , via Wikimedia Commons

Stage II is a tumor extending in the local area, or that with any evidence of limited neck (nodal) disease.

Cancer Research UK, CC BY-SA 4.0 , via Wikimedia Commons

Stage III is a large tumor with or without neck disease, or a tumor with bilateral neck disease. This is where I am locally advanced due to spread to lymph nodes on both sides of  my neck.

Cancer Research UK, CC BY-SA 4.0 , via Wikimedia Commons

Stage IV is a large tumor involving other areas in the skull , an extensive neck disease, and/or any distant metastasis.

Cancer Research UK, CC BY-SA 4.0 , via Wikimedia Commons

Now that we’ve seen how it spreads let me go back to questions which may be lingering- 

What are the symptoms?

In most cases, people with nasopharyngeal cancer notice a lump on the back of their neck. There may be one or multiple lumps, and they’re usually not painful. These masses appear when cancer spreads to the lymph nodes in your neck and causes them to swell. There are also several other warning signs such as:

• Tinnitus, or ringing in your ears.
• Hearing loss.
• A feeling of fullness in your ears.
• Ear infections that won’t go away.
• Headaches.
• Stuffy nose.
• Nosebleeds.
• Difficulty opening your mouth.
• Facial pain.
• Facial numbness.
• Difficulty breathing or speaking.
• Many nasopharyngeal cancer symptoms are like symptoms of other, less serious illnesses. Having one or more of these symptoms doesn’t mean you have nasopharyngeal cancer. But you should talk to a healthcare provider like I did if you have symptoms that last for more than two weeks or they keep coming back.

Where did it come from?

Same question I asked taking into account I don’t smoke and don’t drink that often which are usually the first culprits in head and neck cancers.

Experts aren’t exactly sure what causes nasopharyngeal cancer. However, certain lifestyle behaviors and medical conditions can increase your chance of developing the disease, including:

• Heavy smoking, or using any tobacco product.
• Frequent and heavy consumption of beverages that contain alcohol.
• Having Epstein-Barr virus (EBV). This is the same virus that causes mononucleosis. EBV is common in people diagnosed with nasopharyngeal cancer.
• Regularly eating salt-cured foods. People who eat diets rich in salt-cured meat and fish have a higher chance of developing nasopharyngeal cancer.
• Being exposed to lots of dust and smoke may increase risk.
• Having a family history. If you have a family member with nasopharyngeal cancer, you’re more likely to develop the condition.
• Race. Nasopharyngeal cancer is more common in people living in Southeast Asia, southern China and northern Africa. People who’ve immigrated to the U.S. from Asia also have a higher risk compared to American-born Asians.
• Sex. Men are about three times more likely to develop this cancer than women. Source

Therefore where it came from is a mystery, I simply do not have the answer but the good thing is even though I don’t know where it came from I know what can be done about it and I move forward.

I hope I’ve given a better of understanding of the science of what I’m going through after talking about the human part. Once again thanks for reading this far!

Big words and small words

Last time I gave you the story of how my diagnosis went down, and along the way I dropped some terms and acronyms that are technical, and I didn’t go much into detail. The medical field is filled with jargon, and I was on a learning journey as well. I went through those procedures to provide answers about what was ailing me, as is standard procedure. So now walk with me as I try to help break down what everything means and more so what it felt like as the patient. You can follow links for deeper information.

The tests and imaging started with bloodwork (lots of needles- not fun) biopsies- even more needles, sigh? Surgery- yes even more pricks! Needle fatigue is real, and so much blood drawn like Dracula is my BFF. Initially, they did a full panel when I got to the ER the first time, and it went through parameters like hemoglobin, liver, and kidney function, etc., to get a picture of how my body was doing. More about what that entails here. This was not strange as it’s common on most hospital visits. The next suggestion was CT scan and MRI. Let's have a look at those imaging techniques.

MRI scan Images

CT ( computed tomography) also known as CAT, is an imaging technique that uses X-rays to produce 3-dimensional images of internal organs, and in my case they used contrast, which is an iodine dye injected during the scan to enhance the image. The process is short, fewer than 15 min for the scanning bit and it wasn’t noisy. In cancer diagnosis, this is a primary technique of visualising tumours, and during the treatment, I will undergo more.

Head MRI scan in progress

MRI (magnetic resonance imaging) is a medical imaging technique used in radiology to generate pictures of the anatomy and the physiological processes inside the body. MRI scanners use strong magnetic fields, magnetic field gradients, and radio waves to form images of the organs in the body They involve a much noisier and longer process. Oh, and did I add that you have to lie still to avoid blurring the image? The tube is also longer than the CT scan one, so now you get the picture of lying down completely still in a cold room with your head inside a tube making loud noises for the best part of an hour- not a pleasant experience, more so if you are claustrophobic! At least they give you ear protection for the noise. Note: due to the magnetic field, no metallic items, so unfortunately, no headphones for music… I avoided this test in my first hospital visit, but encountered it later on at the cancer centre and will do more later. Similar to CT contrast dye is also used.

Another imaging method used was ultrasound, which is a bit self-explanatory, using sound waves to view inside the body. Famously used for viewing foetuses and used on my neck .

Neck Ultrasound

The techniques I've mentioned above are used widely in medicine, and in the case of cancer diagnosis there is a particular type called a PET-CT scan that plays a crucial role in staging of the disease and I'll go into more detail. PET stands for Positron Emission Tomography which uses a radioactive tracer to create images used in cancer diagnosis as well as brain and heart conditions. The tracer, in addition to being radioactive is high in sugar and this helps it latch on to tumours so that their activity can be located all over the body. On the scan tumours and other areas of inflammation or high activity appear as bright spots on the image, and the radiologist uses the images for their assessment of disease spread. In order to heighten the sugar sensitivity further fasting for at least 6 hours is ordered before the scan, and in addition, I didn't eat carbohydrates for at least 24 hours. All these instructions are given when you book the test and are fairly straightforward. The tracer takes about an hour to spread through the body so I had to sit alone for 50 minutes after the injection (yes, no escape!)before going in. The scan itself was somewhere in between CT and MRI in both comfort and time. The noise was much less, and the tube is wider so less cramped and once again towards the end a tracer was injected for the CT part. All in all a relatively painless experience, and the results were immediately available in digital format on a USB drive, with the final report taking 2 working days. Due to the tracer, I was literally radioactive for a few hours after and had to stay away from young children and pregnant women! I also had to drink lots of water to flush it out.

PET scan showing bright spots

Lastly is endoscopy, which uses a camera and a flexible tube to look inside. I also had a laryngoscopy, which used a rigid tube to look down my throat. This method is commonly used for the digestive tract, both the upper end and the lower end in the form of colonoscopy. Endoscopic techniques were also used during my initial surgery.

Biopsy sample under microscope

Now we move to the needle work- biopsy is taking a sample of tissue for further analysis in the lab. In my case, the mass was inconclusive, so a biopsy was performed for a proper diagnosis. The first biopsy I mentioned was on my thyroid, which was a fine needle aspiration(FNA) under local anesthesia. They first gave me a shot to numb, then used a needle in combination with ultrasound to target and take the sample. Short process, and I was awake throughout. The biopsy in my nasopharynx, however, was under general anaesthesia in the theatre. After the sample is taken, the pathologists have a look under a microscope and deduce what kind of activity the cells are up to. Is it an infection or something else? And if so, is it benign(dormant) or malignant(rapidly growing and spreading)? The answers to this determine whether it is cancerous or not, making a biopsy a crucial part of the diagnosis.

I hope you now have a better picture( pun intended) of cancer diagnosis and have some questions answered. As always, thanks for reading!

 Nobody prepares you for this

It sounds so cliche, but in actuality, nobody really cana really prepare you for getting the news of a Cancer diagnosis. This disease if I can call it that, has a very big name in our world today, with a plethora of types and cases in the millions. No doubt we all know somebody who has it, had it or succumbed to it, and most often we remember those who don’t make it.

For most of my life it has been something out there that affected others, and at my relatively young age, I didn’t give it much mind. I have seen family and friends struggle with it to different degrees and some of the memories are heartbreaking to say the least, so you can imagine my view of the disease. However, this time it came knocking on my own door.

Everybody’s story is different and mine began with throat and sinus issues which I’ve had in the past so that was the first place to go. Initially it was blamed on acid reflux and I was treated for a few months, but it was not going away. One of the recommendations was to sleep elevated and that had an effect on my neck and head, which started hurting and I attributed the pain to the posture. Months passed without improvement, and it got to a point where the pain would fade but come back once the painkillers wore off. Sleep quality went to the dogs and I craved a good night’s sleep.

One Saturday afternoon, when I was lying on the sofa with a headache, my wife, in her wisdom, decided it was time to go to the emergency room. Best call to have been made at that point, and so I went. At the hospital, I gave my story and the investigation began. Initially, a CT/MRI scan was prescribed as well as ultrasound and Laryngoscopy. The Laryngoscopy was clear but there was a question raised by the ultrasound and the words the attendant used after seeing some nodules in my thyroid “it is not a death sentence” was my first cause for worry. It turned out to be not a problem. The CT scan was a different kettle of fish in that it was clear, and the next thing was some sinus surgery. So far, so good, I thought, but there was more to come the next day.

The scan had initially shown nothing, but on taking a second look they saw something”suspicous” in their words and that warranted further investigation using a biopsy. This second look ended up being what changed everything, as the sinus surgery was truncated once they went in and saw what they’d suspected. Even before I went into surgery, I saw a word in the notes that hit me hard “carcinoma,” which I know could only mean one thing but that was yet to be confirmed.  As I was wheeled into that theatre, a lot went through my mind, but I kept hoping it was not what I’d seen. The surgery itself was pretty quick and I came to a couple of hours later, and I felt my nose much clearer, and I was upbeat. However, a conversation I had later popped my balloon as things didn’t look quite that great. The next morning, the doctor gave me a briefing and told me it was something that could be melted away by radiation, but I still had 14 days to wait for the biopsy results. Even after that early news, I”d already started getting myself ready, and in a call to my best friend, I said” I’m ready to fight.”

“14 days? What an eternity,” I thought and imagined the gymnastics my mind would have to do in that uncertainty. In that state, going back to work was out of the question, and I had to excuse myself. Another call I made almost immediately was to a counsellor so that I could unpack the heavy news. Naturally, my mind went on overdrive and Dr Google didn’t help much to calm my nerves, and I was already seeing the sand going down in my life’s hourglass. The talk with the counsellor was very fruitful in giving me the needed perspective and hope to navigate that uncertain time.

A week later, I got a call from the hospital to go see the doctor. The news had come earlier than expected, which was a relief in part but added anxiety again. The wait seemed endless but eventually I went in to receive the news. I read the jargon in the report but the main news was underlined “Nasopharyngeal Carcinoma” with malignant in the description. So dumbfounded was I that I asked if it was benign or malignant, yet the words were right there. Heavy news, but to his credit, the doctor played the part of counsellor in helping me understand what the news means and how to navigate the implications in my life as well as how to deal with it through support systems, hopes , dreams and my faith. That gave me much more to work on as I began what felt like a totally new phase of life. One medical question was answered but there remained others like how bad is it? How long has it been there? What caused it? How long do I have? What are my chances? Etc.

An emotional rollercoaster does not begin to describe what happened next. When I went to the bathroom, I broke down and couldn’t imagine how to break the news to my nearest and dearest. It took a while to gather the courage to share the news, every time I told the story I would break down again until I chose to write instead of talk. 

As I was processing all of that I had to set an appointment with an oncologist a couple of days later, which gave me more depth on the treatment plan and diagnostics required. The problem was all this was happening before the long Easter weekend so some time would be lost but what to do? The next week I scheduled a PET-CT scan, which would give more information for the staging of the disease. More waiting, but luckily the doctor got to move it forward. As all this was happening, I am glad that my support system came in with lots of encouragement. Calls and prayers, as well as advice on seeking treatment options. Interestingly, one of the tools that got meto do the search was AI chatbots …

In terms of the PET scan, after scouring the internet on tips I got it done and that was the first silver lining in what had been a grey cloud so far. I mentioned this was needed for staging of the disease which determined the treatment plan as well as prognosis. The results indicated that there was some spread to nearby lymph nodes but no distant metastasis(spread) to other organs, which meant it was locally advanced. This eventually led to a stage 3 diagnosis. After weighing option locally and abroad, we settled on going to India and quickly set that process into motion. This period was the busiest with numerous calls, emails, doctor's appointments, and documentation, but I was blessed to have a great group of family and friends who gave me very good pointers.

The move to India also had major financial implications, and what happened next was miraculous. The outpouring of love manifested in word and deed made sure I was gone in record time. I will not tire to say thank you to all those who spared their time and money for me and may blessings follow you! Right now, as I sit here going through treatment, gratitude is my mantra, and I have so many things to be thankful for.

Getting to India meant another flurry of activity, seeing doctors for tests, but within the first 5 days, I was receiving my first dose of medication. As expected chemotherapy has its side effects, but there’s nothing major so far, and I look forward to getting better. 

One of the major pieces of advice I’ve been getting is about attitude. Nobody prepared me for this but I am here now and a positive attitude will go a long way in aiding my recovery. The medicine will be harsh as expected, but I have to keep reminding myself it is to make me better. A close friend told me not to get into a mindset of doom, and that is important and I have to choose hope every day.

Another thing that hit me is considering my mortality. In life, as a young person, I make plans not knowing what the future holds, then this thing comes that puts that ticking clock right in my face. I do not know what the future holds, so my best bet is to focus on getting well today. In any case, none of us knows how we will leave this place, and that keeps those doom thoughts out of my mind.

In essence, it is taking it one day at a time, enjoying the wins and fighting the battles with the disease. 

Thank you for reading

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Been a while... I can’t stand the rain against my window…

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Close up of Lichen on the wall

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Looking up

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Getting down. super close up of the carpet