Believe in your body and in your second sense. Usually if you know there is something wrong there is…trust me; women are particularly good at this.
My GP couldn’t appreciate much to see but at my insistence he arranged a fast track referral.
A quick word here about waiting.
You get used to this.
Wait for an appointment, wait for diagnostic blood tests and scans, wait for an appointment again. Wait wait wait while you gradually pull your hair out in despair. The NHS is a wonderful thing but it can grind slowly.
The track wasn’t as fast as I would have liked but a month later I’m at Morriston hospital being looked at by a Maxillofacial Consultant. He couldn’t see much either even with a scope. To be fair if he had managed to have a good feel he would have agreed with me, but we are both fellow professionals, he believed me when I was adamant I had a problem so he arranged an MRI
If you ever go for one of these wear something warm. These scanning rooms are freezing and if you are having a scan with contrast medium injected into your vein the technicians will find it hard to get access. Believe me, getting stabbed repeatedly with a needle is no fun. I’ve since discovered that if you have crap veins taking a hot water bottle to wrap round your arm works too. The radiographers nearly gave up on my veins but in one last ditch effort they found an anaesthetist and he was in first go.
They take a long time…an hour of the machine clanging and whistling round you , while you lie immobile in its tunnel.
In with the Maxfac consultant.
He tells me the MRI has found something and I’m booked in for a biopsy, a panendoscopy, which will give him a really good look at the whole area of my pharynx the following week.
The biopsy was straightforward, a few jokes with the anaesthetist and I knew nothing.
I had a bit of a bruised sore tongue but home with painkillers and all is well.
Two weeks later
I’m back in the same room.
The room is full of people I don’t recognise which is always an ominous sign.
He comes straight to the point saying my diagnosis was right and he’s sorry. It’s OK I already knew. I’ve known for over two months. It’s a relief really.
Squamous Cell Carcinoma. T2N0M0. Good news in that there is no spread and the tumour is small at about 2.5cm.
I’m introduced to the oncologist consultant. This man is going to be both saviour and nemesis over the next year. It turns out I’m famous. The patient who presented with her own accurate diagnosis.
Now there are doctors and doctors
My Maxfac consultant is an avuncular Asian chap, portly and benign looking, efficient and skilled: just the sort you need holding your hand.
My oncologist is much younger….young to be a consultant. He’s cheerful and exuberant, always smiling and joking. I’ve fallen in love with him already even though I know he’s going to do horrible things to me.
So we go through those horrible things, ticking them off on a consent form. He tells me my tumour is small and that it is P16 positive so he can cure me. I will have both sides of my neck irradiated with the majority being to my left side where the cancer sits for six weeks. I won’t need chemotherapy or surgery.
But I will have mouth burns, pain and I won’t be able to eat.The skin on my neck will burn. We discuss placement of a stomach tube before I start or a reactive nasogastric tube. The hospital practice is to use NG tubes and I’m actually quite relieved. I will lose my sense of taste and my saliva will disappear. Some will return but they can’t say how much and my recovery will take two years. The first three months will be pants!
I sign my consent form and place my future in his hands. The NHS wheels stop grinding at a snail’s pace to now rival Usain Bolt. I’m in the system and it’s no holds barred to get me better.
I get introduced to nursing staff who will help me during and after my treatment. So many people are in charge of my well being. A well oiled machine springs into action and my body isn’t mine any more.
I get blood tests done and my dentition checked that day. Radiotherapy can cause all sorts of problems where the beam travels through unhealthy teeth so often it might be suggested to extract them but thankfully I’m OK.
I have been so depressed about all this. It now looks as if I might live.
I get home and hit Google with a vengeance.
Now, I would recommend that most people leave Google well alone. It’s full of statistics that are out of date and so much inaccurate information. I’m medically qualified so I know what to sift through. I leave those statistics alone.
I learn lots.
Radiotherapy kills cancer cells by disrupting DNA amongst other things. This only works on cells actively dividing and cancer cells do this a lot but they are not all doing this at the same time so the treatment is delivered in fractions. Normal cells are harmed but can repair themselves. X-rays produce lots of free radicals that can kill cancer cells so these things that we are encouraged to mop up by eating lots of red fruit and veg are actually killing our cancer! So maybe there is a case for avoiding these foods while you are being treated? Who knows. I might ask my oncologist.
I bet doctors hate Google!
P16 is used as a prognostic biomarker for certain types of cancer. The way the pathologists measure this is too difficult to explain here but suffice to say they sort of stain the slide of your tumour for it. It is over expressed in Human Papilloma Infection so there’s lots of it.
HPV infection as a cause of oropharyngeal cancer is good news. It makes it more amenable to treatment and your chances of survival are good.
I know HPV causes cervical cancer but I didn’t know about OPSCC. It makes it a sexually transmitted cancer; rates of these cancers have shot up and researchers talk of an epidemic in younger people. Now there’s a thing! Lots of people get the virus, most shrug it off but in those that don’t it can remain latent for up to 30 years. There’s a vaccine. That’s even better news to help prevent countless other people in years to come from suffering and as our youngsters get immunised perhaps these diseases will vanish.
I’ve been told Doctors don’t do oral sex….yeah like they don’t smoke or take drugs…yeah!
I also discover the MacMillan Cancer Support Online Community
What a place! It has all the stuff your doctors don’t tell you. It’s full of people who have gone through and are still going through what I am about to. Yes, it’s self selecting so not accurately representative across the board but there are just so many helpful tips there.
If you have cancer, join it. You won’t regret it.
Now I check my doctors out.
I find a picture in the newspapers of my surgeon, Mr Madhav Kittur beaming with satisfaction over a young lady who’s had her jaw reconstructed with a 3D printed implant.
This is groundbreaking stuff. There is also a list of scientific publications. He’s good.
My oncologist, Dr Russel Banner, has a glowing bio, (the sort you write yourself), with a grinning headshot on the Rutherford Clinic website.
There is lots of work on HPV, his speciality, top of his game: He’s on Twitter. I look in occasionally. I’m in excellent hands.
In the weeks to come I get a chest CT and a neck ultrasound to check my lymph nodes which are all benign.
Most people presenting with OPSCC have enlarged nodes at initial presentation.It’s usually the first thing they notice, a lump in the neck. Doctors have to go looking for the primary and often those nodes have to be removed surgically by an operation called a neck dissection followed by chemotherapy. The drugs potentiate the effect of radiotherapy increasing it’s effectiveness by a few percent.Thankfully I escape that though I guess I’ll never know whether those few percent would have made any difference.
My treatment will be by high power X-rays produced by a linear accelerator.It’s called IMRT (Intensity Modulated Radiation Therapy) delivered by VMAT (Volumetric Modulated Arc Therapy) which means the radiation dose is delivered continuously as the machine rotates all round me, the shape of the beam changing as it moves. It means the target is hit more accurately and collateral damage of normal tissue is minimised.
I have a planning CT so that my tumour can be visualised in 3D and a treatment calculated. To make sure I am in the correct position every time I am fitted with a mask that will eventually clip to the treatment table immobilising me fast. This is made with a sort of hot water softened mesh that drapes over the face and is moulded to every wrinkle and spot, taking a few minutes to harden. Being attacked by a face sucker in Alien must have felt similar….but it was actually not to bad and I got talked to all the time to avoid panic. I asked them to cut eyeholes in it. I get a tattoo in the middle of my chest as a constant reference point…ouch!
This is not my mask, just a picture of one so you get an idea
A few weeks are needed for the technicians and the machine algorithms to work out my treatment beam and dose. Complicated stuff.
I pick up a piece on Google about how the health board is trying to improve their consultants’ access to the horrendously complicated IT systems involved in setting treatments up; to save them logging into different computers along the line; to shorten the interface and reduce planning time. It’s a world I never knew existed and it amazes me that human endeavour is so potent.
Physics was a chore I had to endure to get to Vet School and I was hopeless at it, just scraping a pass but I always like “nuclear” things. I’ve had a great time looking up and getting to understand how a linear accelerator actually produces the X-ray to gobble up cancers. I never ever expected to be one day lying under one though.
So it’s back to waiting, interspersed with the odd visit to my Head and Neck Nurse Support Team