Last Thursday was my latest trip to hospital. My mum came with me, which was nice - she often tries to make it over for the more "important" hospital visits (and the ones where I would be bored out of my skull if I went alone, thankfully!). We got there in ok time, I registered at the reception and we grabbed a seat in the endocrine waiting room. Mum went and got me a coffee (she is a hero) and just as I was raising it to my lips I was called in for the weighing and blood pressure tests.
Weight: 57kg fully clothed and shoe-ed, so I've lost 2kg since the beginning of May and possibly even lost a little since the beginning of July, when I weighed 57kg with no shoes on. That's probably down to the hyperthyroidism. When I first started losing weight, it was because I was on treatment that made me not hyperthyroid anymore, and my appetite dropped massively. Then after my pituitary surgery I lost a bit more weight initially and then was fairly stable for a while. So the fact that it's going down again is now probably a bad thing and due to my crazy thyroid levels. It's strange - I never expected to be one of those people whose doctors want them to stop losing weight, haha!
Resting blood pressure: good; standing blood pressure: a bit low, but fairly standard for me whilst on beta blockers. Then I was finally allowed to return to my delicious coffee.
I actually saw four endocrinologists in total, which was a personal best for me. Although I don't know whether to count one as she didn't speak. I would refer to her as the Silent Endocrinologist, but as she didn't say anything I really have no reason to mention her again.
So first we sat down with Dr Nightcap (shh, I'm stuck for ideas on what to call him) and the Silent Endocrinologist (damnit!) and he went through the basics of symptoms etc. and asked how much I'd been told about what to expect from further treatment. Then Dr Olive and The Main Endocrinologist joined the party. I am so popular!
The short of it is, the tumour has grown and they are going to do more surgery. I had previously been told it had grown "slightly" and this word was repeated. I took this to mean "It has grown a tiny bit, such that a non-medical person like yourself would likely be unable to perceive it at first glance". Then I was shown the latest MRI of my head. It has grown what I would describe as "a slightly alarming amount". You can no longer see the separate pituitary stalk. It's still a fair bit smaller than it was before my original surgery, but at that point the tumour was cystic (ie. had a lot of liquid gunk in the middle, yum) and now it looks probably solid. The good news is that it is not yet encroaching on my optic nerve and it looks like it has remained fairly central so far. You really don't want it growing off to the sides because it becomes impossible to target with surgery if it starts growing around major blood vessels. However, because it has grown a fair bit, they started to bandy around the word "aggressive". I now have an aggressive benign tumour in my head, and if that's not an oxymoron then I don't know what is.*
The Main Endocrinologist described it as "a beautiful surgical target", which I am adding to my list of Weird Compliments I Have Received From The Medical Profession (one day I will publish a book).
The sad news is that it's looking much more likely I might have to have radiotherapy. Previously radiotherapy was mentioned as an option that they would try to avoid if possible. Now it is an option edging its way onto the table. I am super not keen. Obviously I am infinitely more keen on having radiotherapy than on having my head slowly fill up with tumour, but pituitary radiotherapy is really not fun. It basically usually ends up killing off quite a bit of healthy pituitary as well as the tumour, and in the years after treatment you will almost certainly end up needing a selection of fun hormone replacements, which you're then on for life. Plus, with girls (not sure about the boys?) there's a fairly high risk of infertility. I may do a more in-depth post on pituitary radiotherapy later.
So that was a bit sad. Essentially I am back on the lanreotide injections for three months, then surgery. Surgery is a little bit complicated by the fact that I have a persistant sinus/nose infection ever since my last operation, so I will need to be checked out and possibly treated by the Ear Nose Throat team before they let me have surgery. This may apparently involve sticking a camera up my nose. Obviously if that happens you will be the first to get the disgusting details, dear reader! At the moment, surgery may be in November-time, but obviously that depends on appointments getting booked and ENT giving me the all clear and things.
The good news is they're doing fancy endoscopic surgery on me this time which does have higher success rates. The surgery is still a possibility of cure, but success rates are quite a bit lower for a second surgery. And the fact that the tumour has clearly grown in quite a short time (it was stable at my previous scan in March) is not a good sign. Consequently they're already planning how to treat me if/when it does turn out that they don't manage to get the whole bloody thing out.
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*Pituitary tumours are only considered cancerous if they metastasize, which is extremely rare. The majority of pituitary tumours are very slow growing, however mine has grown back quickly so they are treating it as "aggressive". These tumours are also treated as aggressive if they invade the areas surrounding the pituitary fossa.
Showing posts with label benign. Show all posts
Showing posts with label benign. Show all posts
Saturday, 11 August 2012
Friday, 20 January 2012
More Famous People With Lumps In Their Head.
So it turns out that by far my most popular post on this blog so far is the one entitled "Russell Watson, It's Not All About You". I don't know whether my readers just happen to have enduring personal grievances with Russell Watson, or are simply opera purists who object to his pop-operatic croonings. Or maybe it's something else.
So, I'm faced with a choice. In my relentless pursuit of pageviews, should I begin writing reams of personal abuse about Mr Watson, or simply continue to shine a spotlight on the other pituitary ademoaners of the world?
I choose the latter option, and not just because of Britain's vast and unyielding libel laws.*
And so, I present:
Once again I must apologise for the preponderance of people with acromegaly on this list! Acromegaly is an extremely rare illness, caused by a tumor on the pituitary gland which produces excessive growth hormone. However, acromegaly's symptoms are so visually striking that, especially if the illness occurs in childhood - when it will lead to massive growth in height (gigantism), as well as the growth of soft tissue and bone which occur in adult acromegaly - its sufferers are very visible. So-called "giants" are in demand for certain roles in the film and television industry, as well as certain sports where their height gives them an advantage. Consequently, it's relatively easy to find famous acromegaly sufferers, while celebrities who suffer from other kinds of pituitary adenoma may keep their diagnosis private.
I certainly think that it would be helpful if there were celebrities who were known to have Cushing's, or prolactinoma; it helps sufferers to feel that they're not alone, and emphasizes the fact that, while a pituitary adenoma can be a significant bloody nuisance, it's not the end of the world - and that there are plenty of other people going through the same problems.
Obviously I think it would be awesome if a famous person was known to have a TSH-oma/thyrotropinoma. But if that doesn't happen, well I guess I'll just have to step up to the celebrity line!**
Anyway, back to the point. Presenting:
Carel Struycken
Carel Struycken is an actor and an acromegaly sufferer; he stands seven foot tall. Born in the Netherlands in 1948, he's now 63 years old. You might recognise him from playing Lurch in the Addams Family films (click here for a picture!); he's also appeared in Star Trek: the Next Generation, Men In Black, and even Sargeant Pepper's Lonely Heart's Club Band. According to my trusty Wikipedia, he's interested in photography and the development of virtual reality systems. A pretty cool guy by all standards!
Richard Kiel
Richard Kiel is another well-known actor who suffers from acromegaly; his most famous role was as Jaws in the James Bond films. He's now largely retired, although he voiced a character in the animated film Tangled which came out in 2010, and he's written two books; one a memoir entitled Making It Big In The Movies, the second a historical novel co-authored with Pamela Wallace, about the life of Cassius Marcellus Clay, a 19th-Century abolitionist.
Scott Hamilton
Scott Hamilton, the Olympic gold medallist figure skater, is a craniopharyngioma sufferer. I've not previously mentioned craniopharyngiomas, but like pituitary adenomas they're a rare kind of benign pituitary tumour. They cause similar symptoms to pituitary adenomas; they can interfere with hormone production, although they will cause hormone deficits rather than overproduction of pituitary hormones, and they cause headaches and vision loss. They're most common in children and middle-aged adults; Scott Hamilton was diagnosed with craniopharyngioma aged 51. A remarkable guy, Hamilton won four consecutive World Championships and created Stars On Ice.
UPDATE: For those of you who just can't get enough of hearing about famous people with pituitary tumours, I've also written a post about famous people with Cushing's Disease, a post about famous women with acromegaly, my original post about Russell Watson that sparked this whole thing off, and my first post about famous tumourheads!
__________________________________________________
*Russell Watson, I love you.
**Admittedly, I haven't quite worked out how I'll achieve fame. Through my own line of edible greetings cards? By streaking at the London Olympics? For my charitable work with walruses? Ideas on a postcard please.
So, I'm faced with a choice. In my relentless pursuit of pageviews, should I begin writing reams of personal abuse about Mr Watson, or simply continue to shine a spotlight on the other pituitary ademoaners of the world?
I choose the latter option, and not just because of Britain's vast and unyielding libel laws.*
And so, I present:
A Panoply of Pituitary Problems, or: More Famous People With Lumps In Their Head.
Once again I must apologise for the preponderance of people with acromegaly on this list! Acromegaly is an extremely rare illness, caused by a tumor on the pituitary gland which produces excessive growth hormone. However, acromegaly's symptoms are so visually striking that, especially if the illness occurs in childhood - when it will lead to massive growth in height (gigantism), as well as the growth of soft tissue and bone which occur in adult acromegaly - its sufferers are very visible. So-called "giants" are in demand for certain roles in the film and television industry, as well as certain sports where their height gives them an advantage. Consequently, it's relatively easy to find famous acromegaly sufferers, while celebrities who suffer from other kinds of pituitary adenoma may keep their diagnosis private.
I certainly think that it would be helpful if there were celebrities who were known to have Cushing's, or prolactinoma; it helps sufferers to feel that they're not alone, and emphasizes the fact that, while a pituitary adenoma can be a significant bloody nuisance, it's not the end of the world - and that there are plenty of other people going through the same problems.
Obviously I think it would be awesome if a famous person was known to have a TSH-oma/thyrotropinoma. But if that doesn't happen, well I guess I'll just have to step up to the celebrity line!**
Anyway, back to the point. Presenting:
Carel Struycken
Carel Struycken is an actor and an acromegaly sufferer; he stands seven foot tall. Born in the Netherlands in 1948, he's now 63 years old. You might recognise him from playing Lurch in the Addams Family films (click here for a picture!); he's also appeared in Star Trek: the Next Generation, Men In Black, and even Sargeant Pepper's Lonely Heart's Club Band. According to my trusty Wikipedia, he's interested in photography and the development of virtual reality systems. A pretty cool guy by all standards!
Richard Kiel
Richard Kiel is another well-known actor who suffers from acromegaly; his most famous role was as Jaws in the James Bond films. He's now largely retired, although he voiced a character in the animated film Tangled which came out in 2010, and he's written two books; one a memoir entitled Making It Big In The Movies, the second a historical novel co-authored with Pamela Wallace, about the life of Cassius Marcellus Clay, a 19th-Century abolitionist.
Scott Hamilton
Scott Hamilton, the Olympic gold medallist figure skater, is a craniopharyngioma sufferer. I've not previously mentioned craniopharyngiomas, but like pituitary adenomas they're a rare kind of benign pituitary tumour. They cause similar symptoms to pituitary adenomas; they can interfere with hormone production, although they will cause hormone deficits rather than overproduction of pituitary hormones, and they cause headaches and vision loss. They're most common in children and middle-aged adults; Scott Hamilton was diagnosed with craniopharyngioma aged 51. A remarkable guy, Hamilton won four consecutive World Championships and created Stars On Ice.
 |
| Hamilton's last performance on Stars On Ice |
UPDATE: For those of you who just can't get enough of hearing about famous people with pituitary tumours, I've also written a post about famous people with Cushing's Disease, a post about famous women with acromegaly, my original post about Russell Watson that sparked this whole thing off, and my first post about famous tumourheads!
__________________________________________________
*Russell Watson, I love you.
**Admittedly, I haven't quite worked out how I'll achieve fame. Through my own line of edible greetings cards? By streaking at the London Olympics? For my charitable work with walruses? Ideas on a postcard please.
Sunday, 13 November 2011
Russell Watson
I was originally going to make the title "Russell Watson: What You Got, Son?" but obviously, that would be stupid. So I decided not to mention it.
Ahem.
Anyway, today's post is (surprisingly) about international singing sensation and all-round famous guy Russell Watson. Ever heard of him? NOR HAD I.
But last year he popped up on an episode of Never Mind the Buzzcocks, which aired on the evening of the 2nd December. I had an important exam the next day, so obviously I was watching. Mr Watson mentioned that he had had a brain tumour. I, as yet undiagnosed,* thought nothing more of it, not least because the notorious buffoon Tim Westwood was hosting the show and I was quite busy despising him.
About a week later, I got the call from the hospital announcing that I had a pituitary adenoma. Russell Watson was far from my mind. But then one day, as I was waiting to collect a takeaway in my local Chinese, I began paging through their ancient and tattered copies of the Daily Mail** and came across a month-old article about the same Mr Watson and his second round of brain surgery for a "benign brain tumour".
So obviously I had to look it up. After a bit of searching, my suspicions were confirmed: Russell Watson's pituitary gland also enjoys cultivating adenomas in its spare time. I can't really say why knowing this made me feel better, but I guess it's just vaguely reassuring to know that there are other people out there. The poor guy had a particularly nasty case of the pituitary tumour as well, he's had two surgeries and radiotherapy, and the first surgery apparently had a knock-on effect to his pituitary function, something which so far I've been lucky enough to avoid.
However, I would like to take this opportunity to glower at the British press for their woeful lack of precision when reporting on brain tumours. It seems that any distinction beyond that of "benign" and "cancerous" is completely beyond them. For anyone who knows their oligodendroglioma from their meningioma, and particularly for anyone trying to identify famous fellow tumourheads, it makes life rather challenging. Are the details of a diagnosis too much to ask for?
Also, while I don't mean to sound like a stalker who's read every article on the subject, I have to say that I particularly empathised with the last lines from with Russell Watson in this article: "Specialists repeatedly told him that he was only suffering from stress, to which he replied: 'The only thing that's stressing me is this pain in my head.'"
Just like all the years of me visiting various doctors complaining that my hair was falling out. And my heart was doing funny things. And I felt tired all the time.***
UPDATE: You may also be interested in further posts I've made about famous people with pituitary adenomas, which you can find here and here, and there's also this post specifically looking at famous people with Cushing's Disease and another post looking at the strange shortage of famous women with acromegaly when compared to their male counterparts.
________________________________________________________________________
*Though admittedly in the realm of "we're pretty sure it's a pituitary adenoma. Because it's the only idea we have left".
** Oh god. I know. I'm so sorry. I'll never do it again.
***Any doctor treating me in future may be interested to know that if any symptom I may display is ever put down to "stress" again, I will not be held responsible for my actions. Of course, being accused of suffering from "stress" comes with the unfortunate Catch-22 that anyone repeatedly insisting that they're not bloody stressed looks exactly like a stressed-out mentalist. Le sigh.
Ahem.
Anyway, today's post is (surprisingly) about international singing sensation and all-round famous guy Russell Watson. Ever heard of him? NOR HAD I.
But last year he popped up on an episode of Never Mind the Buzzcocks, which aired on the evening of the 2nd December. I had an important exam the next day, so obviously I was watching. Mr Watson mentioned that he had had a brain tumour. I, as yet undiagnosed,* thought nothing more of it, not least because the notorious buffoon Tim Westwood was hosting the show and I was quite busy despising him.
About a week later, I got the call from the hospital announcing that I had a pituitary adenoma. Russell Watson was far from my mind. But then one day, as I was waiting to collect a takeaway in my local Chinese, I began paging through their ancient and tattered copies of the Daily Mail** and came across a month-old article about the same Mr Watson and his second round of brain surgery for a "benign brain tumour".
So obviously I had to look it up. After a bit of searching, my suspicions were confirmed: Russell Watson's pituitary gland also enjoys cultivating adenomas in its spare time. I can't really say why knowing this made me feel better, but I guess it's just vaguely reassuring to know that there are other people out there. The poor guy had a particularly nasty case of the pituitary tumour as well, he's had two surgeries and radiotherapy, and the first surgery apparently had a knock-on effect to his pituitary function, something which so far I've been lucky enough to avoid.
However, I would like to take this opportunity to glower at the British press for their woeful lack of precision when reporting on brain tumours. It seems that any distinction beyond that of "benign" and "cancerous" is completely beyond them. For anyone who knows their oligodendroglioma from their meningioma, and particularly for anyone trying to identify famous fellow tumourheads, it makes life rather challenging. Are the details of a diagnosis too much to ask for?
Also, while I don't mean to sound like a stalker who's read every article on the subject, I have to say that I particularly empathised with the last lines from with Russell Watson in this article: "Specialists repeatedly told him that he was only suffering from stress, to which he replied: 'The only thing that's stressing me is this pain in my head.'"
Just like all the years of me visiting various doctors complaining that my hair was falling out. And my heart was doing funny things. And I felt tired all the time.***
UPDATE: You may also be interested in further posts I've made about famous people with pituitary adenomas, which you can find here and here, and there's also this post specifically looking at famous people with Cushing's Disease and another post looking at the strange shortage of famous women with acromegaly when compared to their male counterparts.
________________________________________________________________________
*Though admittedly in the realm of "we're pretty sure it's a pituitary adenoma. Because it's the only idea we have left".
** Oh god. I know. I'm so sorry. I'll never do it again.
***Any doctor treating me in future may be interested to know that if any symptom I may display is ever put down to "stress" again, I will not be held responsible for my actions. Of course, being accused of suffering from "stress" comes with the unfortunate Catch-22 that anyone repeatedly insisting that they're not bloody stressed looks exactly like a stressed-out mentalist. Le sigh.
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