Each patient story is one individual’s personal experience and even though they will share the same condition as many others, their experiences, feelings and thoughts will be unique to them and not necessarily relate to everyone else in a similar position.
In January, I experienced Cyber Knife and wanted to tell my story not for negatives but to help others.
My story began in my late 20’s when I stopped having periods and was investigated.
It was discovered I had a high level of prolactin, therefore I didn’t have periods as my body thought it was pregnant. After an X-ray of the head I was told the scan was normal (later re-looking at X-ray it wasn’t!). I started on Bromocriptine to reduce levels of prolactin. My father was a lecturer at Aston University for Ophthalmic Optician in the Vision Sciences and was horrified when I told him I had mentioned to the consultant that I was bumping into the kerbs of islands. It was discovered that I had a tumour pressing on my optic nerve through visual field tests and MRI, the tumour size was approx. 3 x 2.5 mm.
In 1993, at 31 I had my first operation via the approach of the upper lip. I was not worried at all. The Pituitary Foundation did not exist then. As I woke up, the surgeon was with me and was really pleased with himself, as he had managed to save 2/3 of the gland. I was out of hospital within five days and I happily blagged six weeks off work whilst enjoying some Easter sunshine and making the most of not working!
The first MRI post-op, I was told not to emigrate as a tiny bit of tumour remained around the Chaotic Artery area. I was not concerned and would be monitored by yearly MRI’s.
However, in 1995 they decided to give me radiotherapy – 30 treatments for six weeks to try and stop a small amount of growth of tumour. This time I blagged three months of work! I felt fine during and after the treatment going on long bike rides and walks in the UK summer sun – I had a cowboy hat I wore continually. Back then (no longer) you could not wash your hair whilst having the treatment! I felt fine. No worries.
Every year I have MRI follow ups, endocrine visits and visual field tests – all completely normal; no breakdown of remaining gland – all abnormally normal!
In 1997 gave birth to my first daughter that they called a miracle (we were told for three different reasons we would not be able to have children without treatment). My second daughter came 15 months later and I went onto contraception!!
In 2004, my Surgeon decided that with some growth to the tumour he would operate again – this time up the nose approach. I thought I may be able to blag four months off work if it was to be followed up with more radiotherapy afterwards – however, surgeon said that they don’t give it to same area twice – the other option would have been to go to Sheffield were it is done in one blast but was told I wouldn’t like it! So, I only managed to blag 6 weeks off. I felt fine once again; no worries and enjoyed time in sun not working.
Again years of MRI yearly with visual field and endocrine …Not a problem, still abnormally normal with no loss of pituitary function, until at a routine visit in 2015 I was told the tumour was growing again and I had to visit a different surgeon as mine was now retired! I was told that this time it was approx. 2 x 2.5mm however, not pressing on optic nerve but in the Chaotic Artery area or Cavernous sinus.
In August 2016, he gave me surgery to debulk it – not a worry, nose approach again and was discharged less than 48 hours after the surgery. Immediately after the op I felt so well I could have walked to the ward!
However after this third operation and the radiotherapy I was told that the tumour was now too rubbery and very difficult with its position to get much out and it was suggested that Cyber Knife may be an option. In November I saw the Cyber Knife team; I had my soft mask made and CT scans wearing the mask in December and on Christmas Eve I had the MRI scan for Cyber Knife.
On Friday 20 January it was delivered …I want to tell you honestly what it is like and what I have experienced so far ….
Friday morning, an hour’s walk – normal for me across fields, railway line and around lakes. 1.00pm appointment time armed with my Abba CD.
I had to lay on table with mask on (eyes shut position) a few scans, and then treatment delivered. To be honest the last 15 minutes were hard as the pressure on the bone at the back of my neck hurt. But, used to lying still in an MRI scan for at least 30 minutes. The treatment took approximately 60 minutes in total and straight after I felt fine. All I had to show for it was a honeycombed face, where the mask had been pressing down – after 30 minutes this was all gone – just as we got to the pub. This is my normal after-hospital treat (and yes even after discharge from last surgery, less than 48 hours after my op, came home via the pub!)
Saturday, I felt fine, had an hours’ walk and felt totally normal.
Sunday, however, in the afternoon started to feel really tired. Early to bed.
Monday morning, I could only open one eye as too tired to open both of them!! I was an emotional wreck, as even with my eyes closed I could not stop crying! Feeling hard done by and sorry for myself however I took control of the situation in the afternoon and ventured downstairs for a pyjama day followed by a good night’s sleep on Monday night.
Tuesday, back to normal. Walk, no tiredness, no out of control emotions just fine.
Wednesday, feeling great – no worries did walk, feeling normal.
Willing to talk to anyone at any time 🙂