High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus

An Explanation Of My First Time Radiotherapy Treatments

Below are details of my first time getting radiotherapy treatment at Guy's hospital (London). As the idea of radiotherapy is to try and kill, or at least slow down, your cancer (tumor growth), in my case my oncologist thought it more beneficial for me to have a combination of chemotherapy and radiotherapy treatments at the same time (overlapping Cycles #4 and #5 of my chemotherapy treatments) rather than have them done separately.

My radiotherapy treatments were done over a six week period (30 days / 5 days per week), which overlapped Cycles #4 and #5 of my chemotherapy treatments, whereby each radiotherapy day actually took around 2½ hours - 2 hours of travel (1 hour each way) with 5 minutes setting up the radiotherapy machine (for my radiotherapy mask to be fitted), 2-3 minutes to scan my head and neck, 18-19 minutes to examine that scan and match it up with my tumor map (see below) and only 2-3 minutes of actual photon x-rays zapping my tumor (cancer growth).

Radiotherapy - THE PRE-APPOINTMENTS

After arriving at Guy's hospital (London) on 20th December 2017 at 10:30am for my blood test and appointment with my oncologist, I was then supposed to have a Radiotherapy Mask made, followed by a CT Scan at 11:45am and then a MRI Scan at 2pm.

I say "supposed to" because when we (my girlfriend and I) arrived at 10am and booked in at the chemotherapy village we were told to visit the radiotherapy village for the ct scan; even though we told reception that I had a 10:30am appointment with the oncologist. When we got to the radiotherapy village we were told that the oncologist could see on their computer that we had arrived and that they would find us. So we waited.....

Mixed Up Appointments - CONFUSED NHS RECEPTIONISTS

By 11am a radiotherapy consultant asked me if I was in the waiting area ready for a ct scan, which I replied yes and she then said I would be seen at 11:45am; even though I explained to her that I had a 10:30am appointment with the oncologist, to which she replied "If you were to see the oncologist now, you would miss your slot for a ct scan". So I was forced to take the ct scan appointment and miss the oncologist appointment.

Never mind. After the ct scan, and creation of the radiotherapy mask prior to that, we visited the out patient village to enquire about (re-slot) the oncologist appointment. "Do not worry" the receptionist said, "The oncologist can see you are here". So with that, we went back to the radiotherapy village to have my mri scan.

To cut the story, we got to see the oncologist around 4pm who by that time complained to me how I had now missed my appointment and messed up her whole days' schedule. Not only was this unprofessional of her, but we were not to blame for those mishaps; that wasted at least two hours of our time too. The receptionists were to blame. Hence why after investigating the matter and recognising it was not our fault, she apologised profusely to us both the next time we saw her. Yet another example of the nhs system in disarray.

Radiotherapy - THE MESHED MASK

The creation of the radiotherapy mask, which is used to align/map the photon x-rays, is one of those wonders of technically. You basically lay on a very hard flat clinical table where a kind of warm meshed synthetic towel (sheet) is placed over your face by a nurse that then dries to the contours of your face.

The meshed towel starts off flat and warm, but is then shaped into the shape of your face by the nurse before being remove for cool down. When it has completely cool down you are fitted with it again to make sure it fits tightly onto your face. This is because it shrinks when dried whereby it can shrink too much.

The Radiotherapy Mask

The finished face mask (meshed towel) is used to map the x-ray zapping zones

The mask (meshed towel) has to be a tight a fit as possible so that you cannot move your face around in it, once you lay on the radiotherapy table with the mask on. To make sure no movement whatsoever occurs during your actual radiotherapy treatment, in order to avoid photon x-rays zapping the wrong areas of your body/face, the mask is then bolted onto the table with you wearing it.

Prior to having your mask (meshed towel) made, you have a mouth piece made that allows you to breath through your face mask during your actual radiotherapy treatments. As your mouth piece fits under your mask, so it cannot move during your actual radiotherapy treatment, it is very important that you make sure your mouth piece fits comfortable. Hence why it is equally important to communicate any discomfort and so on to the technicians; to prevent future problems such as redesign delays.

Cancer Face Mask

If you lose too much weight you may need a new face mask made

As you can see: The face mask is very breathable, so you should not feel any kind of claustrophobia (i.e. lack of air) wearing it. I used to close my eyes during radiotherapy treatment and think of nice things, which I found lowered my heart rate and therefore allowed me to breathe calmly.

Radiotherapy - THE CHEST TATTOO

With your face mask ready and worn for the first time, the next step is to have your tumor map (x-ray beam basting zones) aligned/calibrated with it. This means the table bed you are lying on (which is the same as the actual radiotherapy bed used for scanning/blasting x-ray beams) is then set up (aligned and calibrated) with your body/face using a laser beam and two markers. One marker gets put on your mask (i.e. with a black marker pen line) and the other gets put on the centre of your chest in the form of a small, but permanent, tattoo; so it will not rub/wash off like a permanent ink marker pen.

Radiotherapy - THE TUMOR MAP

When you attend your oncologist's appointment prior to your first radiotherapy treatment, your oncologist will show you your latest mri scans whereby it will be overlaid with a coloured map that shows where the radiotherapy photon x-ray machine will target each area of your tumor (cancer growth) and at what percentage. So in my case I got 20% radiation to my brain, 30% around my eyes and 50% at my nose (the root of my tumor). This photon x-ray blasting of those exact areas gets done each and every time, at the same percentage, you have a radiotherapy treatment.

Unfortunately, when the specialists are deciding the best approach and areas to treat your cancer they have to target other areas not necessarily affected by your tumor; just in case there are any hidden, leftover, or unknown cancer cells still lurking in those areas. This normally means they have also decided to kill off good cells around the outer edges of your tumor just to make sure nothing has spread into those outer edges too.

On a good note. The bad cells are so mutated at the end, they cannot regenerate whereas the good cells can regenerate. Hence why the specialists are confident that you will recover from many of the bad side effects of radiotherapy.

Radiotherapy - DIET And SPEECH SPECIALISTS

Just prior to my first radiotherapy treatment I had a consultation with my dietitian and speech therapist whereby my dietitian thought my diet was fine and my speech therapist gave me some mouth and throat exercises to do in anticipation of me getting throat and speech problems. I visited them every Wednesday, starting on the fourth week of my radiotherapy treatments.

Unfortunately after the first two visits it just became a chore to see them, simply because they asked the same routine questions every week; as if something drastic must or should have happened from the previous week. I found them not be helpful and just a waste of nhs resources, time and money. It turned out I did not need the speech therapist. My mouth was functioning properly in terms of it opening, closing, talking and swallowing.

Radiotherapy - FIRST APPOINTMENT

My first radiotherapy appointment began on 15th January 2018 at 4pm, for 35 minutes, during the 7 hour (10:30am - 5:30pm) day of chemotherapy treatment; Cycle #4. The first 10 minutes was used to set up (calibrate) my face mask and chest (machine alignment) tattoo with the radiotherapy scanning/x-ray machine, so that it knew precisely where to blast my tumor (tissue growth).

The radiotherapy machine did not hurt one bit, nor did the actual radiation, and only made a noise at the beginning (when the daily scan of my head and neck was being made, to make sure they were in exact alignment for my tumor map and that the radiation (each photon x-ray beam) would hit its target area precisely) and at the end when the actual photon x-ray beams were blasting my head and neck. Although the radiotherapy machine was never loud, most of the time the nurses would have the music radio on to drowned out any possible noise.

Radiotherapy - THE RADIOTHERAPY MACHINE STAFF

99% of the nurses/staff operating the radiotherapy machine were very pleasant, kind, thoughtful and genuine. However, as they rotate shifts, I found on some days I got two particularly grumpy nurses/staff who were so clinical all they would say each time was "Hello" and "Lie on the table bed" before blasting my tumor. They did not joke or make polite conversation whatsoever. It was almost as if they did not like their job. Luckily I did not see them that often.


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