Category Archives: Pituitary

Today I started the process of disclosure – letting family and close friends know about my condition, what will happen next and the prognosis. Speaking to close family was relieving in that I no longer feel a need hide this from them. I also  emailed a series of close friends the following text:

Some time in the next few weeks I will have to go into hospital for an operation to remove a growth from my Pituitary gland. I will need a general anaesthetic and will probably be in hospital for 4 days. I will walk out and am promised that with the exception of being a bit ‘bunged up’ for 3 or 4 weeks I will be fine. I don’t yet know exactly when, I have an appointment with the neurosurgeon on 7th September and will know soon after that when the date is for surgery.

So, what is this all about? Well, years ago I volunteered for something called UK Biobank. Biobank consists of health and lifestyle data from 500,000 volunteers who committed to being followed and tested over a long time – it’s about providing medical researchers with a bank of longitudinal data with which they can work. So in May this year I turned up at Salford for a range of tests, one of which was a MRI scan of my head. Well, they found something unexpected – a Pituitary Adenoma, which is a non-cancerous growth. It’s about the size of a walnut and the problem is that it is pushing on my optic nerve such that I have already lost a bit of visual field and it will only get worse unless we take it out. There is no other treatment for this size and type of adenoma.

The fun is that the operation will be under general anaesthetic and will be done by pushing some tiny surgical instruments up my nose, cutting through to get to the area around my pituitary and then sucking out the offending adenoma! Transphenoidal Surgery, if you want the technical term!

I have to admit that I was scared shitless when I first heard about this, but the more I have learned, the happier I have become and now have no concerns about what is to happen. You don’t need to be bothered either. Apparently many people live their whole lives without knowing that they also have one of these adenomas, I’m just one of the lucky ones who found out before it did any harm to my eyesight.

I have been keeping, and am about to publish, a blog based on my experience as the situation developed over the last few months. I hope you are not disappointed in me for not disclosing this sooner, but I wanted to be clear about what was going to happen and the consequences before I bothered anyone (except Suzanne) with this. Even my family only found out yesterday.

As for Suzanne, she has been the classic ‘rock’. She has shared the worry and the relief as we have seen consultant after consultant. She’s the one who thinks about the worst case scenario while I plough on in my relentlessly optimistic way. She is also the one who asks the ‘technical’ questions – I knew that Health Sciences degree would come in handy sooner or later! I love you Suzanne.

I am not surprised, yet I am still touched by the immediacy and supportiveness of responses from those dozen or so people who received the personal disclosure. Phone calls within minutes of receiving my email, return emails shortly afterwards. Thank you everyone – I really want to say that “I really am well and…”

And how intriguing that only yesterday Sue Perkins (yes, I am a Bake Off fan) also disclosed her condition. Hers is a ‘functional’ adenoma that actively secretes higher than normal levels of certain hormones; mine is ‘non functional’ in that it secretes nothing and the only real problem is the effect on the optic nerves of the physical size of this lump in the head.

Arrive at  0950 says the letter, so we do.  What the letter did not say was that we would sit for an hour and a half along with a further 7 or 8 groups of people with no information about what was,  or was not,  happening.  We realised that we had not seen anyone come in or out of the two doors labelled for ‘my’  doctor and his registrar .  Previously we had been dealt with promptly and efficiently.
Dare I go downstairs for a coffee and a magazine, or might I miss my place by being absent when I was called?

We are called and Dr Rob Murray is a gem! Full of rapport and empathy; rarely (and certainly not so far in this journey) have I come across anyone, let alone a doctor, with such stunning levels of empathy and willingness and ability to engage with me. We talk about the challenges of running a clinic not knowing how long each patient will take, the Biobank project, his achilles problems and a host of other stuff before we get down to business.

Firstly we review the blood tests and the Glucagon Stimulation results. My Testosterone is below low and my Growth Hormone is almost zero, but apart from that everything is OK. The plan is to see what happens to these when the adenoma is removed although as I am not suffering any of the classic symptoms of low GH (excessive tiredness) it might not need supplementing anyway. It seems that sometimes production of these hormones returns once the pituitary is no longer stressed by the adenoma.

He shows me the MRI scan (2mm resolution rather than the 10mm used by Biobank) which clearly identifies an adenoma about 28x24mm. The pressure on the optic chiasm is demonstrated (that seems to be the trigger to ‘do something now’) along with how it surrounds the carotid, has pushed the Pituitary aside and may have even deformed some bone due to the long-term gentle pressure. He points out some patches that suggest it has ‘died’ because of lack of blood, explains why radiotherapeutic approaches are unsuitable (too near the optic nerves) and the lack of pharmaceutical approaches to large non-functional tumours.

The message is clear – it needs to be taken out, by transsphenoidal surgery. There is no realistic alternative – indeed no alternative.

I’m fine with this. We talked about ‘wait and see’ but he was insistent that because of the existing impact on my visual field, it needed removing.

So on to surgery. He explained the implications of transsphenoidal surgery, using an endoscope up the nose, cutting a small piece of bone away to access the pituitary and the devilish adenoma before sucking most of it out while leaving the bits around the carotid alone. This last bit had worried me “Could it grow and squeeze the carotid closed?” Apparently not – phew!

How much will they take out – as much as they can consistent with not risking the optic nerve and the carotid.

This was my first real chance, and based on the rapport we had established I asked “Just how good are the surgeons with whom I am scheduled?” I was pleased that this did not faze him one bit and he went on to explain the innovative techniques that Nick Phillips had been using and that since he took over certain procedures the outcomes were well above average. All encouraging.

I was surprised at how easy it was to commit to surgery – perhaps the lack of alternatives and the prospect of ever-reducing visual fields with the implications of losing my driving licence made it easy. Oh, it seems that I must tell DVLA about my condition! Hope that my visual field is not so bad that I lose my licence! I need Form V1, available on the internet  https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/452228/V1.pdf

Finally, now seems to me to be the time to disclose to others what is going on. I have not wanted to do this so that others didn’t get unnecessarily worried, but now I am in full knowledge of the facts it seems to be a good time to let people know. That is the subject of the next piece.

With such a positive experience I am left wondering how best to bring my story, which could have been better, to the attention of those who run LTHT. It’s not been bad, and that is partly because I am pretty fatalistic, don’t see the point in worrying about stuff that I cannot control, and recognised early (although not early enough) that this was not terminal!

And I came across a very helpful resource explaining the surgical procedure http://www.mayfieldclinic.com/PE-EndoPitSurg.htm

Out of the blue I get a letter informing me of a Neurosurgery appointment on 7th September, some 5 days after an existing Endocrinology appointment.

Now I always knew that one possible outcome was surgery, but to get the notification out of the blue was a bit of a shock and once again I find myself wondering about the lack of ’emotional’ care present in the system.

What’s interesting is the advice in the letter that if a decision is made to go ahead with surgery I will need to stay up to 5 hours for a pre-surgery assessment. Well, if they think I am going to make a decision of such significance on the spot then they can think again!

Now to go and find out about surgeon outcomes and how I can compare who I am being offered with the rest of the country. Also, what questions do I need to ask about the potential surgery?

So, the day I arrives for my glucagon stimulation test. “This test may make you nauseous” said the advance material and “you will be required to submit for blood samples over a 3 hour period”. My own reading had unearthed the fact that I would be receiving an intramuscular injection.

So I turn up at LTHT as required at 0900 to be greeted by two very friendly, but unfortunately difficult to understand, nurses. Once I got used to the Japanese, or was it Chinese, accent of one of them she was extremely empathic and we had a good time together for the next 3 hours. However, I really do wonder about this question of accents. This is not the first time that I have come across somebody I found difficult to understand during this particular journey, not because their English was not up to scratch, but because they retained a very strong accent.

Anyway, back to the test. After an initial abortive attempt to find a space for a cannula on my left hand we finally managed to get one into the right. The left one still hurts, a few days later, I felt at the time the attempt was a bit clumsy and there is clearly a bit of subcutaneous bruising. Hardly a major issue but non the less. Half a dozen assorted tubes of blood later I am ready for my injection into my upper arm. If anything caused me anxiety (and on a scale of 1 to 10 it was only up to about 3), it was the prospect of a small injection into my upper arm. I have not had one for probably over 40 years and of course it turned out to be utterly painless. So I went to hang around for 3 hours.

It was a good job I took a book to read because I simply sat around in the open reception area to be called every half hour for another tube of blood to be taken.  The first attempt was a bit of a challenge and I was concerned that they would have to find somewhere else to put the cannula, but a little bit of massage, dangling my hands down by my side, pressure on exactly the right spot on the vein leads the blood to flow. OK, go away and come back in another half hour…

Go away and come back again in another half hour was repeated a further 5 times and then I was free to go.

Just one more observation on keeping the patient informed. After my first blood has been taken a large syringe was filled with clear substance ready to be injected back into my hand. No explanation although once I asked there was no problem explaining that this was to flush the cannula out and avoid any clotting. Very sensible, but why not explain it to the patient before doing it?

And how about a better explanation of what the test is actually testing? This briefing note from The Christie seems perfectly adequate.

So now we wait for the test results. I have an appointment on 2nd September and so far as I am aware they should have all the information necessary for the MDT and that meeting on the 2nd September ought to be able to find a way forward. Although everytime a phone number from Leeds appears on my phone I wonder whether I’ve been being called in early.

Sunday afternoon, when better to turn up for an MRI scan?!

Jimmy’s was quiet yet, contrary to Jeremy *unt’s imaginations, there were people working in several places not least radiography.

It was a MRI scan – I hear that some people are ‘bothered’ by them, not me. I find it strangely relaxing laying on my back with knees properly supported and some nice soothing music playing. The only difference was that this time it involved 3 (or was it 4) scans followed by an injection of a contrast enhancer and 2 more scans. So now I am walking around with some of that rare earth element Gadolinium rushing round my bloodstream – nobody mentioned anything but it would be cool if it turned your pee purple or something!

Well, now I have got to the right place things seem to be moving faster. I got a phone call this afternoon offering an MRI scan tomorrow (Sunday) and a letter in the post setting up the dynamic blood testing (Glucagon Stimulation Test) that was mentioned to me – the latter on Friday 7th (one week away). So, by the time I go to my next appointment with the consultant endocrinologist they should have had a chance to discuss my tests and be able to discuss options with me.

With the identification of a slight (?) reduction in optic field and some more research I have been doing, this looks increasingly like an operation to remove at least most of the adenoma. But let’s wait and see.

http://press.endocrine.org/doi/full/10.1210/jc.2010-1048

Off to Leeds today for a session with the opthalmologist to map my visual field. An interesting experience, with interesting results.

A straightforward task, to identify when a moving dot first appears in my visual field, repeated four  times with different sizes and brightnesses of dot. First one eye and then the other. I reckon that I had sussed out the result before seeing the plots on screen. A slight reduction of the field in the upper left/right quadrants, indicating that there was slight pressure on the optic nerve already.

The lady I saw had nothing else to say except that they would have to tell DVLA who would be slow in deciding whether or not it was significant enough to stop me driving. Now THAT bothers me, not being able to drive would seriously inhibit my activities. Still, nothing I can do but sit and wait.

So, this morning we turn up for an appointment at the endocrinology clinic, ostensibly for an appointment with Dr Murray who of course we do not see. Instead we see his registrar, Dr Rob King, who is personable and takes the necessary time to explain the position and answer our questions. The urine sample so carefully collected this morning was not needed and was discarded (apparently they always ask for one on the appointment letter).

Prior to seeing Dr King, I was again weighed and had my height measured – maybe it has changed since my initial visit and maybe they simply didn’t know that it had already been done. I was a little disappointed with the nurse/technician who met me, she seemed to be simply going through the process and had about as much empathy and rapport as a brick wall.

To cut a long story short, the blood tests for which I received results a few weeks ago show that although there is nothing to worry about, some of the tests were at the bottom end of the normal range and so they want to do what they call dynamic blood testing which will involve going in for a day, having early morning blood tests, having an injection to stimulate pituitary action and then following my bloods during the day.

He is also scheduled me for a repeat MRI to look more closely at the pituitary, following which an MDT will be held. I asked whether it would be normal or possible to attend the MDT and essentially got no for an answer on the basis that these meetings consider several different patients. Fair enough.

He repeated some of the gross symptomatic tests – skin tone and temperature, visual field and then went on to a testicular examination because apparently one symptom of low testosterone can be a reduction in size of the testis and they may become  spongy. I have certainly not noticed either of these symptoms and he seemed happy with the examination.

So, I am now lined up for more blood, another MRI and ophthalmology wizzair repeat appointment at the clinic in 4 to 6 weeks time. By which time the MDT should have met and we will have something more concrete to discuss.

We talked briefly about the mortality associated with these adenomas. He confirmed my GP’s assertion that many people died with them rather than of them. He also explained that if there was any sign of it starting to affect the visual field that would be one of their real concerns.

I asked for explanation of the letter containing my blood results, expressing concern that the results had no units against them, that we had not been able to find any reference anywhere to “insulin light growth factor” and did not know what FH and LHM stood for. We explained that with a Health Sciences degree and a lifetime as a practising scientist behind us, we could understand the jargon etc and so wanted to be clear. Well, it should have said “insulin LIKE growth factor”, FSH (follicle stimulating hormone) and LH (luteinising hormone). I am NOT impressed with this – surely ‘they’ can get such important things right – nobody, even highly qualified practitioners, should have to ‘interpret’ incorrectly reported results? I think this might lead to a letter to the hospital.

I am still working on the basis that if this was really urgent and our life threatening they would be moving considerably faster than they are. Hopefully it will, at least initially, be a monitor situation but if they have to operate then they have to operate. I do not feel at all stressed about this situation, slightly hacked off until today when at last I manage to speak with somebody who could engage with me. I think Suzanne is actually more concerned that I am and of course with her Health Sciences degree she has probably got more information about the whole situation and its potential implications. The more you know the more you can worry about what might happen.

I am still of the opinion that there is no need to share this with anyone else. Anyone else we tell is likely to have much less information about the situation and we do and I can’t see the point, at this stage, in burdening anyone else with potential worries about the long term implications. Put present my thoughts are to wait for the next clinic appointments and, if we have a way forward, at that point tell people what is going on.

Well, after all these weeks I have finally been ‘offered’ an appointment with Dr Murray, in the endocrinology clinic. I got  a phone call on Wednesday from his secretary (Katerina) and a letter on Friday morning.

Somewhat surprisingly, I sense no real feelings about this. Perhaps after all this waiting I have, rightly or wrongly, rationalised the situation as being either “time for an operation” or “we will monitor and see what happens”. I would prefer the latter – why risk an operation unless there is an imminent danger?

Anyway, Suzanne has asked to come with me so on Tuesday 28th July at 0959 I will turn up at the Endocrinology Clinic with my urine sample and see what he has to say.

Maybe I will feel like disclosing the situation more widely than just Suzanne after that, although I will need to think hard about the value of such disclosure. If it is asymptomatic and a ‘monitor’ decision then how does it help others to know – so far as I can see they will not be able to help and my condition will not be eased, on the other hand they might worry unnecessarily being less aware of the facts than I am. If it is an ‘operate’ decision then fair enough, as I will be having a major operation with several weeks’ of convalescence. We will see.

So, I haven’t written anything for a week mostly because nothing substantive has happened.

Although I had an appointment with my normal GP in 2 weeks’ time, I decided to go back sooner to the doctor who had given me the news in early June and have a chat with her about what was going on and whether or not she could expedite anything (as had been suggested by Dr Parnell’s secretary).

I explained to Dr Sweeney that I was concerned at:

• the lack of communication between Leeds hospital and myself,
• that I was unsure whether or not anyone over the was looking at my total pathology or simply dealing with individual issues,
• that after mention of the word ‘urgent’ on more than one occasion I was surprised to find myself in a queue with a 6 to 11 week wait for an appointment at the endocrinology clinic
• and that I had not been able to get straight answers (or indeed any answers) to whether or not my scan had been received by the hospital and whether or not and MDT had been held to consider my case.

Dr Sweeney explained that she had had a couple of letters from the hospital, on looking at these I found that I haven’t been copied in and she happily gave me copies. There was nothing new in these letters –  the original referral from Dr Yoga to endocrinology and ophthalmologists and a copy of a letter from Dr Randall asking for an endocrinology  appointment. I’m disappointed that the hospital don’t find it appropriate to copy me in on this correspondence and will mention this in due course.

Dr Sweeney seems to share my surprise at what was not going on and undertook to chase up the referral in the hope of getting a firm appointments for endocrinology sooner rather than later. We will see.

Now, one week after seeing Dr Sweeney I have still heard nothing. The one consolation that I have is the conversation with Dr Sweeney in which she pointed out that without the Biobank scan we might never have known about this adenoma and that, as with loads of women with breast cancer and loads of men with prostate cancer, I might well die from other causes without the adenoma ever being a problem. Nonetheless, she understood my concern to get expert opinion.

I think one of the things that concerns me most about this is that nobody is telling me anything, almost everything I know I have found out either by searching on the Internet or by asking specific questions on the rare occasions I ever get to see anybody. Nobody even sat me down and explained what adenoma was and were it not for my own efforts on the Internet I don’t think I would have found out that the condition is not immediately life-threatening, as I had suspected when seeing the look on Dr Sweeney’s face when she first told me. This is really not good enough. Surely someone should take responsibility in these circumstances but sitting patients down and ensuring that they know the basics about the condition that is being diagnosed?