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 radiotherapy. Show all posts
Showing posts with label radiotherapy. Show all posts
Saturday, 11 August 2012
Thursday, 12 January 2012
A Weighty Matter
Traditionally there are two things you're not supposed to ask a woman: her age and her weight. This fact has led me to conclude that the staff at my local hospital are ill-mannered oiks, because every time I visit they demand to know my date of birth and promptly stick me on some giant hospital scales (I once had a go in a hospital weighing chair. It's just like a normal chair… except that when you sit in it, it weighs you. Surprise!). I am led to understand that they do this to everyone at the pituitary clinic, presumably because so many pituitary problems can affect your weight. Cushing's disease can lead to significant weight gain; acromegaly can as well, and thyroid hormone disturbances can have disturbing consequences for the waistline.
Before beginning treatment with lanreotide last January, I had presumably been hyperthyroid (ie. had too much thyroid hormone) for at least a year, given my symptoms. Hyperthyroidism is "supposed" to lead to weight loss, by affecting the metabolism; hypothyroidism (having too little thyroid hormone) leads to weight gain. In my case, though, this didn't hold true; I'd been hyperthyroid for a long time without weight loss, and in fact it was when treatment began to reduce my thyroid hormone levels that I started to lose weight, because I found that it reduced my appetite from "extremely peckish" to "normal person". It had never occurred to me previously that my appetite was unusually high* - but as it turns out, the hyperthyroidism caused by my pituitary adenoma was giving me an appetite which more than matched my raised metabolism. When I did begin to lose weight, the lanreotide injections may also have nudged things along, because they effectively turn off your gall bladder for a few days after each injection - the gall bladder stores bile, which aids in the digestion of dietary fats, so the lanreotide leaves the body less able to digest fats for a few days each month. Effectively it's an imbalance of the humors.
But anyway, the short story is that I've lost just about a stone over the last year, pretty slowly but steadily. A stone might not sound much compared to the stories of vast weightloss that WeightWatchers et al may peddle you, but it's over 10% of my bodyweight. That's quite a bit.
The pros of losing weight:
1. Being thinner!
2. More piggyback rides may be demanded from boyfriend
3. Getting to buy a bunch of new clothes
The cons of losing weight:
1. Having to spend a load of money on a bunch of new clothes
2. It worries my mother
3. Newfound paranoia about getting really chubby
Previously, I had never really worried about putting on gallons of weight,** but unfortunately the whole experience has underlined for me the fact that, if I can suddenly lose so much weight without trying, I could just as easily gain it, should my hormones decide they want to screw me over in a whole new way. That is a scary thought. Everyone always tells you that as long as you eat right and exercise you've nothing to worry about, and the cruel common wisdom is that everyone who's fat brought it upon themselves - but the fact is that's not always true; as I mentioned earlier, the symptoms of pituitary tumours often involve weight gain. People with Cushing's disease can eat incredibly strict rations and still put on a lot of weight; over the last year, I've experienced for myself how much even relatively small changes in thyroid hormone levels affect appetite, as well as weight and metabolism. Even right at the beginning of my lanreotide treatment, when my thyroid levels had only dropped slightly, my appetite suddenly crashed back to earth, and throughout the year it has noticeably fluctuated from month to month.
I'm really lucky that my weight change has, so far (and fingers crossed) been in an ok direction, but I can't help but worry that, should I need more treatment in the future, that might change; surgery and radiotherapy both have the potential to knock out my body's ability to produce various pituitary hormones and leave me hypothyroid rather than hyperthyroid
I now have a nightmare where I have to use the extra-large doors they have installed in the hospital for obesity clinic patients. I'm hoping that will only happen if 80's style shoulder-pads come back into vogue.
God forbid.
______________________________________________________________
*Well ok, it had, but I thought I was just extremely greedy.
**Well ok, I had, but only after watching the BBC's classic (and unspeakably horrific) programme Super Size Ambulance.
Before beginning treatment with lanreotide last January, I had presumably been hyperthyroid (ie. had too much thyroid hormone) for at least a year, given my symptoms. Hyperthyroidism is "supposed" to lead to weight loss, by affecting the metabolism; hypothyroidism (having too little thyroid hormone) leads to weight gain. In my case, though, this didn't hold true; I'd been hyperthyroid for a long time without weight loss, and in fact it was when treatment began to reduce my thyroid hormone levels that I started to lose weight, because I found that it reduced my appetite from "extremely peckish" to "normal person". It had never occurred to me previously that my appetite was unusually high* - but as it turns out, the hyperthyroidism caused by my pituitary adenoma was giving me an appetite which more than matched my raised metabolism. When I did begin to lose weight, the lanreotide injections may also have nudged things along, because they effectively turn off your gall bladder for a few days after each injection - the gall bladder stores bile, which aids in the digestion of dietary fats, so the lanreotide leaves the body less able to digest fats for a few days each month. Effectively it's an imbalance of the humors.
But anyway, the short story is that I've lost just about a stone over the last year, pretty slowly but steadily. A stone might not sound much compared to the stories of vast weightloss that WeightWatchers et al may peddle you, but it's over 10% of my bodyweight. That's quite a bit.
The pros of losing weight:
1. Being thinner!
2. More piggyback rides may be demanded from boyfriend
3. Getting to buy a bunch of new clothes
The cons of losing weight:
1. Having to spend a load of money on a bunch of new clothes
2. It worries my mother
3. Newfound paranoia about getting really chubby
Previously, I had never really worried about putting on gallons of weight,** but unfortunately the whole experience has underlined for me the fact that, if I can suddenly lose so much weight without trying, I could just as easily gain it, should my hormones decide they want to screw me over in a whole new way. That is a scary thought. Everyone always tells you that as long as you eat right and exercise you've nothing to worry about, and the cruel common wisdom is that everyone who's fat brought it upon themselves - but the fact is that's not always true; as I mentioned earlier, the symptoms of pituitary tumours often involve weight gain. People with Cushing's disease can eat incredibly strict rations and still put on a lot of weight; over the last year, I've experienced for myself how much even relatively small changes in thyroid hormone levels affect appetite, as well as weight and metabolism. Even right at the beginning of my lanreotide treatment, when my thyroid levels had only dropped slightly, my appetite suddenly crashed back to earth, and throughout the year it has noticeably fluctuated from month to month.
I'm really lucky that my weight change has, so far (and fingers crossed) been in an ok direction, but I can't help but worry that, should I need more treatment in the future, that might change; surgery and radiotherapy both have the potential to knock out my body's ability to produce various pituitary hormones and leave me hypothyroid rather than hyperthyroid
I now have a nightmare where I have to use the extra-large doors they have installed in the hospital for obesity clinic patients. I'm hoping that will only happen if 80's style shoulder-pads come back into vogue.
God forbid.
______________________________________________________________
*Well ok, it had, but I thought I was just extremely greedy.
**Well ok, I had, but only after watching the BBC's classic (and unspeakably horrific) programme Super Size Ambulance.
Tuesday, 15 November 2011
Russell Watson, It's Not All About You
Following my last post about Russell Watson, I felt inspired to find out about some other famous people who have had pituitary adenomas, using the trusty-yet-woefully-incomplete-and-indeed-quite-inaccurate Wikipedia List of Brain Tumour Patients. And I have learned about:
Governor Pico is my absolute favourite discovery. Not just because I love a guy with a sexy beard, not just because of his awesome name, but also because he is a very intriguing case of retrodiagnosis. Pío Pico lived from 1801 to 1894; acromegaly was first identified in 1886 and he was never diagnosed in his lifetime. In 2010, this paper was published suggesting that he suffered from acromegaly. Looking at pictures of him from 1847 to 1858, he progressively exhibits more of the characteristics associated with acromegaly; this picture from 1858 clearly shows a large forehead, big nose and enlarged lips, a hairless face and hairloss from the eyebrows, which could indicate secondary hypothyroidism, and misaligned eyes which could be due to the tumour pressing on cranial nerves. If you look at the article I linked above, there are more photographs which show his huge hands.
But that's not where the interesting ends. The Governor lived well into his nineties - no mean achievement for a Victorian - while the article suggests that around 80% of patients with untreated acromegaly would be expected to die in the first ten years after diagnosis. It seems instead that his pituitary adenoma spontaneously infarcted sometime after 1858; pictures of him as an old man show that his facial features and hands have become much smaller, he has a full beard and his eyebrows have grown back.*
Another pituitary adenoma and a really sad case. Kevyn Aucoin was a well-known make-up artist and photographer who had worked for Vogue and Revlon, wrote books and appeared on TV. He was diagnosed with acromegaly aged 39, although it's believed he suffered from the condition for some time before it was diagnosed, and the pain of it resulted in an addiction to prescription painkillers. After surgery for his pituitary tumour, his use of painkillers intensified and he died, only a few months later, from liver and kidney failure. You can read about him on his Wikipedia page and this article.
Sun Mingming
You could probably guess from the subtitle that Sun Mingming also has acromegaly (an overrepresented condition in this sample! I guess because the symptoms are so unusual, lazy journalists don't just write "brain tumour" and move on). Pituitary adenomas which secrete growth hormone and develop before puberty result in sufferers becoming very tall; in adulthood it's all about the growth of soft tissues. Sun underwent gamma knife radiosurgery at the age of 23 and is still playing.
It's been kind of a challenge to discover much about James Murphy and his pituitary macro-adenoma, but in this article he certainly emphasises the fact that it's a benign tumour rather than cancer, and that although it can cause some serious problems and, rarely, death, the prognosis is nowhere near as bad as a cancerous brain tumour. One online forum I bumped across in my researchings was castigating celebrities who fail to make this distinction, so good on him.
From the hints about his ongoing "hormone inhibiting treatment," which on one site is said to be bromocriptine, and the fact that he's not obviously acromegalicious** I'm guessing he has a nasty prolactinoma, but that is just a guess. I'm kind of hoping so, purely because I've found it so hard to get examples of famous pituitary tumourheads who have something other than acromegaly.*** His tumour seems to have been pretty badly located, as they operated basically through his face rather than the nose or mouth, something I hadn't come across before.
So there you have it, a brief run down of some famous folk. There are actually quite a few more cases of acromegaly which I came across - people like Andre the Giant, for instance. But that's enough for now.
UPDATE: True to my word, I have written another post about more famous people with pituitary adenomas. I've also written about famous people with Cushing's Disease and the question of whether there are any famous women with acromegaly.
___________________________________________________________
*Sadly, the article notes that he suffered a lot of abuse and discrimination in his lifetime for his unusual appearance.
**Acromegaly sufferers: you should use this word.
***Acromegalicious folk are obviously awesome, but I'm trying to be balanced here. As for finding anyone famous with a TSHoma like me - it's difficult enough just finding published case studies.
Pío de Jesús Pico
last Governor of California under Mexican rule.
Governor Pico is my absolute favourite discovery. Not just because I love a guy with a sexy beard, not just because of his awesome name, but also because he is a very intriguing case of retrodiagnosis. Pío Pico lived from 1801 to 1894; acromegaly was first identified in 1886 and he was never diagnosed in his lifetime. In 2010, this paper was published suggesting that he suffered from acromegaly. Looking at pictures of him from 1847 to 1858, he progressively exhibits more of the characteristics associated with acromegaly; this picture from 1858 clearly shows a large forehead, big nose and enlarged lips, a hairless face and hairloss from the eyebrows, which could indicate secondary hypothyroidism, and misaligned eyes which could be due to the tumour pressing on cranial nerves. If you look at the article I linked above, there are more photographs which show his huge hands.
But that's not where the interesting ends. The Governor lived well into his nineties - no mean achievement for a Victorian - while the article suggests that around 80% of patients with untreated acromegaly would be expected to die in the first ten years after diagnosis. It seems instead that his pituitary adenoma spontaneously infarcted sometime after 1858; pictures of him as an old man show that his facial features and hands have become much smaller, he has a full beard and his eyebrows have grown back.*
Kevyn Aucoin
American make-up artist and photographer
Another pituitary adenoma and a really sad case. Kevyn Aucoin was a well-known make-up artist and photographer who had worked for Vogue and Revlon, wrote books and appeared on TV. He was diagnosed with acromegaly aged 39, although it's believed he suffered from the condition for some time before it was diagnosed, and the pain of it resulted in an addiction to prescription painkillers. After surgery for his pituitary tumour, his use of painkillers intensified and he died, only a few months later, from liver and kidney failure. You can read about him on his Wikipedia page and this article.
Sun Mingming
7'9" basketball player
James Murphy
Death metal guitarist man
It's been kind of a challenge to discover much about James Murphy and his pituitary macro-adenoma, but in this article he certainly emphasises the fact that it's a benign tumour rather than cancer, and that although it can cause some serious problems and, rarely, death, the prognosis is nowhere near as bad as a cancerous brain tumour. One online forum I bumped across in my researchings was castigating celebrities who fail to make this distinction, so good on him.
From the hints about his ongoing "hormone inhibiting treatment," which on one site is said to be bromocriptine, and the fact that he's not obviously acromegalicious** I'm guessing he has a nasty prolactinoma, but that is just a guess. I'm kind of hoping so, purely because I've found it so hard to get examples of famous pituitary tumourheads who have something other than acromegaly.*** His tumour seems to have been pretty badly located, as they operated basically through his face rather than the nose or mouth, something I hadn't come across before.
***
So there you have it, a brief run down of some famous folk. There are actually quite a few more cases of acromegaly which I came across - people like Andre the Giant, for instance. But that's enough for now.
UPDATE: True to my word, I have written another post about more famous people with pituitary adenomas. I've also written about famous people with Cushing's Disease and the question of whether there are any famous women with acromegaly.
___________________________________________________________
*Sadly, the article notes that he suffered a lot of abuse and discrimination in his lifetime for his unusual appearance.
**Acromegaly sufferers: you should use this word.
***Acromegalicious folk are obviously awesome, but I'm trying to be balanced here. As for finding anyone famous with a TSHoma like me - it's difficult enough just finding published case studies.
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