High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus

Diary Of Diagnosis Appointments And First Treatments

Below is a list of the actual appointment dates and times I was given and attended in relation to me, John Cairns, being diagnosed with and treated for T4bN2c High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus (cancer of the head and neck).

The appointments begin with my first doctor's appointment (when my cancer symptoms had begun) and end with the radiotherapy appointments. They should give you a realistic snapshot of how quickly, or slowly, things happen.

Appointments In - SEPTEMBER 2017

4th - Doctor - Visited my doctor about the symptoms I were experiencing - Double vision and disorientation, blocked right nostril and a small lump under my right eye.

Result: The doctor gave me a one week prescription of Amoxilin (anti-biotic) for a possible infection, which didn't work. After another consultation the doctor then wrote a 'referral letter' to the King's College hospital (London) Neurology department.

5th - Dentist - Visited my dentist for a routine check-up and x-rays to determine if I have any gum disease and problems with my teeth.

Result: The dentist said my teeth and gums were fine.

7th Optician - Visited Specsavers optician for an eye test that examined the physical parts of my eyes as well as my vision.

Result: The option said my eyes were in great physical condition, but also acknowledged the double vision and disorientation issues I was having with my eyesight.

25th - DECS - Visited the DECS (Eye Screening) department of King's College hospital (London) for the yearly inspection of the back of my eyes.

Result: The test results showed no sign of Diabetic Retinopathy, which meant the back of my eyes were fine.

Appointments In - OCTOBER 2017

12th - Neurologist - After being given an appointment with a neurologist for 8th February 2018 at King's College hospital (London), which was later brought forward to today (12th October), I had a Blood Test, Chest X-Ray and CT Scan done. I was also given one week's supply of Tramadol (an extra powerful pain killer).

Result: The neurologist did not rule out a chest infection at this point or something worse either. He had to wait for the chest x-ray and ct scan results for further diagnosis.

20th - Surgeon - Visited the ENT (Ears, Nose and Throat) department of Guy's hospital (London) for a consultation with a junior Surgeon. He asked questions as to the history of my symptoms, checked my blocked nose with his special camera and then got me a biopsy done.

Result: The junior Surgeon did not want to say what the problem could be at first, but after telling him I live in reality and could take any bad news he then hinted the problem could be some sort of sinus cancer; such as Maxillary Sinus Cancer.

26th - Neurologist - Another consultation with the neurologist at King's College hospital. He showed me the results of my chest x-ray and ct scan where he pointed out a tissue growth (tumor) of 3.0cm growing under my right eye. He also showed that my right eye was being pushed forward by this tissue growth. The only good news was that my chest and organs were still in good health.

Result: He said he was the one who referred me to the ENT (Ears, Nose and Throat) department of Guy's hospital (London) last week and that he would still be monitoring my case as a patient of his.

27th - Surgeon - Another visit to the ENT (Ears, Nose and Throat) department at Guy's hospital (London) where I was expecting a proper diagnosis this time. Unfortunately the junior Surgeon said the full results of my biopsy were not ready yet.

Result: The senior Surgeon was called into the room whereby he told me the problem could be Lymphoma (a common cancer) or something more rare, but needed other tests to be carried out to be sure.

28th - MRI - Had an MRI Scan of my whole body at Guy's hospital (London).

Result: None.

Appointments In - NOVEMBER 2017

2nd - PET Scan - Visit Guy's hospital (London) for a PET Scan.

Result: None.

3rd - Oncologist - Got the diagnosis from the junior Surgeon - T4bN2c High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus (cancer of the head and neck). He said surgery could not help and referred me to a Oncologist (Cancer Doctor).

Result: The oncologist showed me the results of the MRI Scan and the damage the cancer had done so far. She described it as Huge. She said it would require a combination treatment of Chemotherapy and Radiotherapy.

6th - Dentist - Dental X-Ray and Check-up was required to make sure Chemotherapy and Radiotherapy treatments could go ahead.

Result: The dentist said all was fine, but prescribed me some extra fluoride toothpaste (Colgate Duraphat 5000 ppm) for minor plaque issues.

7th - Audiologist - Audio earring test and blood tests for kidney diagnosis. Chemotherapy and Radiotherapy can damage your hearing in some cases and affect your kidney via toxins, so this audio test was needed in order to make sure my kidneys could cope with those treatments.

Result: The Audiologist said my left ear had slight hearing problem, but right ear was fine. Kidney blood tests would be available for the specialists in a couple of days.

8th - Chemo Consultant - Pre-Chemotherapy Consultation about what will happen on the first, second and third day of chemotherapy treatment as well as a chance to ask my own questions and get them answered.

Result: The consultant was very pleasant and sincerely. I did not sense any fakeness in her voice or body language. She wasn't rushing through anything. In fact she spoke very calmly and took her time to answer all my questions in a very honest, realistic, way. I like it when a consultant answers truthfully as opposed to answering with: "This answer will give you hope. It is what you want to hear".

10th - First Chemo - First Day Chemotherapy Treatment - The first day of chemotherapy treatments were painless. Simple fluids passing through my bloodstream via a drip machine. It took up my whole day (around 8 hours) to complete, but of course this is nothing when someone (the NHS staff) is trying to cure or at least ease your cancer.

Result: We (my Hungarian girlfriend T√ľnde and I) had a pleasant time in Suite B of Guy's hospital (London) Chemotherapy ward (village). We were both offered lunch (a drink, sandwiches and pudding), was able to get tea and coffee whenever we felt like it, was able to use our laptops, read books, listen to music or just sleep if we wanted to. Having someone by your side all the time really helps with possible boredom - We saw many elderly patients with nobody at their side. Luckily the kind-hearted nurses were at hand to talk to them.

11th - Second Chemo - Second Day Chemotherapy Treatment - The second and third days of chemotherapy treatment, in my case, involved taking Anti-Vomiting tablets and Etoposide tablets (booster tablets) in my home only (no hospital visits required). I was also given Anti-Blood Clot medicine syringes to inject on Days 5 to 12 of my 21 Days cycle of chemotherapy treatments.

Result: The medications were straight forward enough to take and their labels were very clear and precise on how you should take each medicine.

29th - Oncologist - Weight taken and consultation with oncologist to discuss results of chemotherapy treatment, Cycle #1. Blood test afterwards.

Result: I signed the consent form to have 6 weeks of radiotherapy treatments done in January 2018, which will be done alongside cycles 4 and 5 of my chemotherapy treatments.

Appointments In - DECEMBER 2017

4th - Chemotherapy - Had Cycle #2 of my chemotherapy treatments.

Result: No problems. All went smoothly.

5th - Ears - Had my ears syringed at St Thomas hospital (London) because both ears were waxed up whereby I could hear well with my right ear, but only about 50% with my left hear.

Result: Hearing dramatically improved in both ears after syringing. I would say my hearing returned to 90%+ of its original. The nurse (Hilary, very fun and friendly) said a little sound may have been lost due to chemotherapy treatments, which I was aware of could happen.

20th - Oncologist - Had a consultation with my oncologist, a blood test, radiotherapy mask made, ct scan with mask and mri scan with mask.

Result: Was told my chemotherapy cycles were doing me well, but my blood count (blood platelets) was too low. 100, when it should have been nearer 300.

27th - Chemotherapy - Had a blood test to measure my blood count (blood platelets) where it was now 285, which meant I was able to have my 3rd chemotherapy treatment today, as planned.

Result: No problems. All went smoothly.