In 2001 I had a routine blood test for lipid profile and, though I was only 42, my doctor decided to include PSA. This came back as slightly elevated (6.1), so I was referred to a urologist for a biopsy (I prefer to call it a "biopsy") with 6 cores. This proved negative.
One year later my PSA had risen to 7.5, so I had another biopsy that once again proved negative.
In April of this year my PSA had risen to 21.0, so yet another biopsy was administered--this time with 10 cores. I was beginning to wonder how much of a prostate I had left! One of these showed 'weak suspicious cell activity.'
At this point my urologist decided to get to the bottom of it all (pun intended) and do a saturation biopsy. A total of 23 cores were taken under general anaesthetic. Two of these came back positive, though in a most unusual way: I have a form of cancer that is rare, being in my papilliary ducts.
Currently I am awaiting a CT scan to stage it, though my doctor is fully confident that it has not yet spread beyond the prostate (they don't just say such things, so they?) After that, he is recommending 2 years of hormone therapy followed by brachyterapy. I cannot work out why he cannot do high density brachytherapy at this time, but feel I have to go with his judgement. (He is not a one-man-band, but is consulting with specialists in Chicago regarding protocols.)
The biggest challenge right now is for my wife, who has been in denial for the past two years. She is having to do a sudden re-think, especially having read of all manner of complications for every type of treatment (impotence and incontinence are her biggest worries). I, however, am not comfortable with watchful waiting as an option: after all, the past two years have been merely enforced watchful waiting, and my PSA has risen exponentially.
So, I await developments...
The news is that there is no apparent metastasis-wonderful news, as far as I am concerned. The treatment will be three months of hormone therapy to stop the growth (started that this morning) followed by brachytherapy, which will be at about Christmas.
If a few days discomfort then gives me a longer, pain-free life, it will be a wecome Christmas present.
I promised some time ago that I would give an update on my progress, so here goes...
I had originally thought I would be receiving hormone-blocking treatment for two years, then brachytherapy. This was a misunderstanding on my part. Instead, I received brachytherapy on October 31st 2004, but will continue with hormone blockers for the next two years.
My journey to brachytherapy began with a volume study on October 16th, which was hell: this procedure was done without general anaesthetic, though the literature I had been given told me that I would be knocked out. As it was, I did not take well to the catheterisation. The doctor who catheterised me rammed the tube home as though trying to clear a blocked drain, and the pain was exquisite. Having installed the thing, he abandoned me for about twenty minutes while he took care of other matters. Jacqui, my wife, saw my discomfort-the feeling that I needed to urinate was overwhelming, and I could not keep still-and went to seek his help. Rather than come and check on me, the doctor simply told her that a "mild" sensation of needing to urinate was normal. Needless to say, we were not impressed, and insisted that he have no further involvement with my treatment.
The ultrasound was conducted by a lady so charming that I had all on to hide my embarrassment. Despite my discomfort, I managed to quip, "Abandon all dignity, all ye who enter here." She informed me that my prostate was small, a mere 16 cc ("Ah well," I mused, "never mind the width, feel the quality"), and that this would at least shorten the volume study. When she told me she was done, I asked her to ensure that she had saved the results: there was no way I wanted to have to go through this again. Then came the nasty job of removing the ^&*#@)(#& catheter, which the doctor yanked out as though hauling a boat to shore. I was left with a burning sensation that lasted a week (I told Jacqui, "It's like pissing red hot fish-hooks") and gave me nightmares: after all, I had been told that I would need to be catheterised for the brachytherapy itself. These fears persisted until I went to see my urologist, who was to perform the procedure itself. He did much to reassure me, though it was a major challenge for him.
The seeding itself took place on Sunday October 31st, 2004, at 7.30 a.m. I was glad to get it out of the way so early in the day, though this meant me getting up at 4.30 a.m. to start preparations. I was very nervous, despite my urologist's reassurances, but the staff was wonderful, and did all they could to settle me down. The head nurse was especially a delight: she had trained in England (my home country) at Harrogate, a town scarcely a stone's throw from where I grew up, and we spent much of the preparation time reminiscing about my native Yorkshire. Furthermore, the anaesthetist was a kindly gentleman in his mid fifties whose bedside manner was all I could wish for.
Perhaps I have spent too long in the Developing World, where I have grown accustomed to frequent power cuts, an intermittent water supply, and roads with potholes so big they can be seen from the Moon: but I was left speechless ("Gob-smacked," as we say in my native Yorkshire) by the professionalism of the staff, and by the operating theatre itself, which gleamed with chrome, was absolutely spotless, and crammed with all manner of monitors to tell the team such things as my heart rate, blood pressure, breathing rate, shoe size and mother's maiden name.
In all I was given 56 seeds, and the process took about an hour. I did not react well to the general anaesthetic, and came round initially with the feeling that I could not breathe-a result of a blocked nose. I lay on the operating table, completely paralysed and feeling absolutely petrified as I struggled to draw breath, and thinking what a shame it was that I had survived the procedure only to die now. The sense of relief when I managed to open my mouth and suck in air was palpable.
Shortly I was taken to the recovery room, where I developed an overwhelming feeling that I needed to urinate. Indeed, it was with this news that I greeting Jacqui when she was allowed in to see me. I was told in no uncertain terms that this is a natural response to catheterisation, and that it would pass shortly: which eventually-not shortly-it did. I seem to recall complaining to Jacqui at being treated so curtly, and she telling me to do as I was told, that the staff knew what they were doing. I also recall shivering wildly after the cold of the operating theatre. I could imagine the newspaper headline: Man dies of hypothermia in the tropics. The shaking did not subside until I was covered with four sheets and a blanket.
The remainder of my recovery was uneventful. I was shortly taken to a ward-I was told, "You have to go now, Dr Wilson: the party's over." "It's been fun," I replied-and there I was given cold water to soothe my throat, which was sore from the anaesthetic. (I have a rasping cough even now, two days later.) I was informed that I could leave once I had shown I could pass urine, and so spent the next two hours waiting for my bladder to fill. When at last I could pee, the feeling was delicious: no pain whatsoever, and the streaming went on so long that I was worried that the bottle might not be big enough. My pride when I showed Jacqui and the nurse my 600 cc of urine was laughable. I was discharged from the hospital at about 1.00 pm.
Currently I have a bruise the colour of raw liver, and sitting for any length of time is uncomfortable: and I need to urinate about every 2 ˝ hours, day and night. Because of this, and perhaps the anaesthetic also, I feel very tired. Otherwise, however, I feel fine. Jacqui tells me I look as if the weight of the world has been lifted from me. In many ways it has: my worries about the procedure and its effects proved largely unfounded, and in my mind's eye I can see the cancerous cells capitulating by the thousands. I know I am not in the clear yet, and that it may be years before I can feel so: but at least I feel as though I am on the way to a long and healthy life.
I received 56 brachytherapy implants (I-125) on October 31st 2004, at a time when, following some Zoladex treatment, my PSA had fallen from 29 to ~4.9. This week I had my first post-implant PSA test, which read 2.57. I have called this in to my urologist, and am awaiting news as to what happens next.
The reading seems a bit high for complacency, but, without trying to sound panicked, I have to recall that mine was not the usual type of prostate cancer, being in my papilliary ducts rather than elsewhere in the gland and its periphery. Its location was the cause of the high PSA readings in the first place: it is unusual to have a PSA so high without metastasis. It is, therefore, highly unlikely that the wonderful stories of people whose PSA became undetectable after 3 months after brachytherapy apply to me. (Indeed, my cancer is sufficiently rare that I am being monitored with interest by groups worldwide. Not that that is much of a source of comfort...
I know I still have 21 months of intermittent Zoladex treatment to go, and there is life in the implants yet. I shall get in touch again when I have heard from my urologist.
Early last September (2005) I had a PSA test, only to find that, after a series of rises, it had risen to 13.0 ng/ml. This coming at the end of a series of rises, my urologist told me that I have "continuing cellular activity," which I guess means the brachytherapy was not a success--that my cancer is not in remission. However, a CT scan taken last September indicates that (Thank God) there is still no spread beyond the prostate.
My urologist followed his ponouncement with 3 months of Androcur treatment, which brought my PSA down to 3.30 ng/ml by November.
Currently I am in a three-month period without drugs, and am due for my next PSA in mid March. I guess at that point we shall have to decide how to proceed. Thankfully my urologist tells me that we haven't yet exhausted our options, though I have no idea what those are.
Hi and Greetings from the Caribbean. I thought I should being you up to date on my tusslings with PCa, given that you already have my profile on record.
We (Jacqui and I) visited my urologist together about 5 weeks ago, at which time my PSA had risen to 16.3 ng/ml from ~3.5 ng/ml in January. He told us that there was obviously some cellular activity which had been beyond the reach of the brachytherapy, and that we now have to concentrate on that. The rate at which my PSA rises is most disconcerting, though I am assured that is not necessarily a measure of how big the tumour is. He wanted to put me on hormone ablation tablets for a year (we use Androcur here). We asked if we could look into radiation instead. He agreed, and sent my details overseas (to a hospital not a stone's throw from where I grew up in Yorkshire. 'Tis a strange, small world, isn't it?)
Yorkshire wrote back to say that they would not want me to have more radiation after the brachytherapy: that the risks of side effects are too great. I have to go along with their opinion: unlike the American hospitals, the British NHS is not driven by rabid profit motives, and are more likely to consider the quality of life for me, the patient.
So, for the moment I am back on the Androcur, and hoping my PCa is not yet hormone independent. My latest PSA, taken about two weeks ago, recorded a fall to 8.1 ng/ml, which suggests it is still responding positively to the drugs.
Let's hope it stays that way a good, long while. Meanwhile, I am doing what I can with my diet, though this may be a feeble weapon against PCa. Recently I saw an article saying that hot peppers might have some effect on hormone indepent cells, so I have added a scotch bonnet pepper to my food intake each day. It feels good to be doing something that might be positive: and I have acquired a taste for peppers. Mind you, if somebody told me that deep fried bats' doo-doo with custard would help, I'd be chowing down on that too.
I am told it could take years for this to work, so I am now in this for the long haul. Meanwhile, I feel good: no problems peeing, no back-ache, no apparent spread to the lymph nodes and seminal vesicles. So...
I have never been very good at waiting for my PSA test and biopsy results. You would think that, after so many tests, I would have grown accustomed to the wait. If anything, the opposite is the case. I have an impatient, anxious streak that wants to know where I stand as soon as possible after the blood or flesh is taken. And the more tests I have, the less patient I become. But, of course, I have no choice but to wait. I cope with this using what psychologists would call displacement behaviour; but there is no way I or anybody else can predict on what I will fixate while waiting.
Maybe a few examples will illustrate. The first time I had a biopsy, and had to wait three weeks for the results, Jacqui and I travelled on the spur of the moment to Ecuador for a holiday. We just wanted to get away from home for a while and distract ourselves with novelties. It was a disaster. We were surrounded by the most amazing scenery and wildlife-we visited the upper Amazon and the Galapagos Islands, among other places-but all I could think about was the damned biopsy and the looming results. Somehow, I knew-I already knew-that I had cancer. Jacqui, on the other hand, was insistent that there was no way I could second-guess that results. I was, after all, of the wrong age and wrong racial type for early PCa, and had no family history of the disease. She insists that I still owe her for that holiday, although I have no idea what I can do to make amends. I cannot think of anything big enough, loving enough. I also owe her for a birthday somewhere along the way too-I think that was for my third biopsy.
With my PSA tests, which are currently being conducted very three months, I have to wait about a week for the results. My anxiety, however, commences about a week before the blood is even taken. So, over two weeks I displace, and sometimes in very screwy ways. Over the years, during those weeks of awaiting results, I have, for example:
a) written and published an autobiography, although it is about the seven years I lived and worked on the tiny Caribbean island of Nevis, and makes no mention of my looming cancer
b) composed some music, some of which has been performed. This includes a jolly little piece for viola and piano called "Requiem for a Cancer Cell" (you will gather that I have a bit of a creative streak)
c) spent a fortune on eBay on a stamp collection
d) buried myself in my research work to the exclusion of all else (I am a geologist who lectures at the University of the West Indies and gets to play at palaeontology).
All of these have been hell for Jacqui. She has stood by me through thick and thin, but these weeks of waiting are very thin indeed. She feels pushed out by my brooding silences, by my preoccupation with trying to second-guess what the results might be, and by my fixations. I do my best to make up for it in the months between tests, but whatever I do then cannot help but be inadequate.
This last time, however, was the screwiest and toughest of them all so far. I have been on hormone ablation tablets (Androcur) for almost a year now, and have grown concerned that the day will come when my PCa becomes hormone independent. The test was done on a Wednesday, my doctor received the results on the following Monday, and, when I called to learn his reaction, his secretary told me he had left for the day and not left her with any reaction to pass on. She could not even give me the PSA reading. In short, I would have to wait until the following Friday (today) for his next surgery to learn my results. That meant three whole days of waiting to learn if my PCa was still behaving. Three whole days! Having become so adrenalin ridden and primed for news, no matter whether good or bad, on the Monday, my reaction went off the scale.
Looking through my shelf of books at work for a particular one I needed, I chanced upon a book that my first real girlfriend gave me. In the front was a simple inscription-a quote from Winnie-the-Pooh, the words "Happy 21st Birthday Brent," and her name, all written in her swirling, girlish handwriting. She gave me that book 26 years ago. Inside was a photograph of the two of us taken the day we graduated from university. I became fixated on wanting to know what had happened to her. I wanted to know where she lived, if she had married and had kids, how her career had developed. I fixated on her to displace my anxiety. I looked her up via the internet (that wasn't too hard: the British electoral roll is published online) and dashed off a letter.
What a crazy, absurd, idiotic, selfish thing to do. I am married. I have a beautiful wife. I have a wife who is so supportive and loving that she is the envy of many around me. She is the best person ever to have entered my life. (For those who want to know what she looks like, there is a poor quality photograph online at some blog or other she did) My marriage of 13 years has been far, far happier than those of many of my acquaintances. So, why this latest fixation? Why displace in this way, on an ex from nearly three decades ago? Jacqui asked mournfully, "Why can't you displace on me instead?"
The truth is, I haven't a clue. Maybe it was simple curiosity-though this I doubt. Maybe I wanted to show off how far I have gone in life. Maybe it was a hankering after those simpler, gentler days when I had no such enemy as this PCa inside me. Maybe I wanted to apologise for the way that my first girlfriend and I split up-which we did because I was a selfish individual who took to little note of her needs. Maybe I became fixated on a wish to apologise for my behaviour then, so that I could move forward with a least one less burden on my mind. The truth is, I haven't a clue. All I know is what fixation I developed this time, and what hurt it caused Jacqui.
I remember vaguely a quote from Oppenheimer, from the day the Americans were testing their first atomic bomb at Trinity (which, I think, is in Nevada). He said, "God, these affairs are heavy on the heart." Having unsuccessfully irradiated PCa feels like having my very own atom bomb. The difference is, I don't know when, or even if, it is going to explode or how rapid that explosion might be. And the waiting for results from tests is far from a walk in the park. The whole affair is heavy on not only my heart, but also on those of my wife and the others close to me. All I can say in self defence is that, one of the first things it says on the leaflet that comes with the Androcur tablets is that-in my words, not theirs-mentally they will send me screwy. It does not, however, talk of the knock-on effect that this has on others!
And the result I received today? My PSA has fallen to 0.54 from 1.13 at the end of last November.
And the outcome? Fifty more days of Androcur.
Brent says in an e-mail that his PSA was marginally up at 0.54 ng/ml but his doctor is not too concerned.
Greetings from Trinidad. I hope this update finds you as healthy as I am.
A few days ago a student of mine looked me up on the internet. (She is one of the very few ever to do so. Are students not inquisitive nowadays? Or do they merely accept their university lecturers as a matter of course — just part of the educational system that will give them their degree? And were we really ever any different?) In addition to finding seemingly endless trivia about my academic career – very little of it posted by me, I might add – she came across my jottings for Yananow. Evidently feeling she should say something, but also unsure what she should say, she told me that my Yananow writings are . . . interesting. What could I say? How much does a 19 year old know about such things as hormone deprivation, unwelcome boobs or brachytherapy? — unless, that is, they have prostate cancer in their family. She then asked me, "But what happened next?" That's a fair enough question, so here I am, writing the answer I should have sent to you some time ago.
After 18 months of Androcur tablets, my PSA was driven down to 0.12. The doctor treating me tells me that this augers well for long term control, so Jacqui and I are naturally delighted. Right now, guided by our doctor, we are trying a few cycles of one-month-on-the-tablets, one-month-off, to see how things proceed. If this goes well, we shall switch to 3 month cycles of intermittent treatment, and hope that the cancer remains hormone dependent for a long, long time. I came off the drugs on November 13th 2007 (a slightly belated birthday present of sorts?), so am due to go back on them on December 13th.
After 18 months of hiding behind the tablets, and maybe even daring to hope that they just might knobble the dread beast altogether, I suddenly feel more than a little vulnerable. I am taking all the supplements I know of that can slow the growth of prostate cancer (capsaicin, curcumin, soy and selenium-laden Brazil nuts, to name a few), and sometimes my entire diet feels to be geared towards keeping the beast in check. For example, I was warned by my doctor not to eat red meat. I guess they say that to all patients, no matter what the medical complaint. However, I took the attitude that he must know more than me about my condition (no snide remarks about my doctor, please; I think he's doing a wonderful job, and have even named a species of foraminifera, a microscopic monster called Textularia sawhi, in his honour). So, I stopped eating red meat except when on holiday – that is, just a few times a year. Oh, how I sometimes long for a nice, juicy steak (medium rare, please, with a baked potato and a green salad). Oh, how I sometimes wish we went away on holiday more often.
There are other aspects to coming off the Androcur that are disquieting. Dare I write about these? Will students reading this find it amusing? Or – and perhaps more disconcerting — will the information I post here ever be held against me should I ever apply for a position elsewhere? Something tells me that I should tell all, because I am actually writing for those unlucky men who have joined us in the prostate cancer club, and who need all the honest information they can get. So, here goes...
The Androcur tablets, as you know, depress one's libido. They didn't kill it altogether on my part (although the injection of Zoladex years ago did that for a while); they merely slowed things down a little. But coming off the Androcur, I suddenly find myself with an increased libido and a very (pleasantly?) surprised wife! Some time ago a Yananow reader wrote and told me how lucky I was to have such an understanding partner. I am pleased to say that she continues to be understanding, if a little long-suffering and bemused. Meanwhile, we are making as much hay as we can while the sun shines. True, sex isn't what it used to be—nowadays it's like a black-and-white film, whereas it used to be in full, glorious Technicolor. However, our making hay also stops me from staring (too hard) at the pretty young things on the campus where I teach.
As for the student who asked what happened next, I am grateful that she asked. During my time as a schoolchild, I used to think that teachers weren't normal people. They didn't have lives outside of school. I don't know what I thought they did during school holidays, but I have some vague memory that, while at primary school, I thought the school building had a special room in which the teachers lived while the schoolboy me was on vacation. At university my attitude changed a little, but that was because I thought my lecturers between them knew everything – absolutely everything. All I had to do was ask a question, and they would give me an answer . . . of sorts. Maybe sometimes they were making the answer up as they spoke; but their answers always seemed so reasoned, so measured. Once again, they weren't proper humans. So in this case, I am glad the student read my site and asked her question. I hope that her doing so has made me – one of her lecturers (and one who always tries to give reasoned, measured answers) – not only a proper human, but also a human with his own vulnerabilities and flaws.
Best wishes for Christmas
I guess it's time for another update regarding my PCa, so hear goes--yet more stream of consciousness writing.
Weight gain and gynecomastia: two of the side effects of prolonged use of Androcur. When I searched for "Androcur weight gain" using Google, the first sites I encountered were from women with excess testosterone associated with polycystic ovarian syndrome. They were delighted at their loss of excess body hair and increase in boob size. Each to his or her own, I guess. I cannot say I am overjoyed at these myself (except, perhaps, for the way Androcur has maintained my lush head of hair).
After 20 or so months on continual Androcur, my PSA had fallen to 0.12, so my doctor (perhaps encouraged by Jacqui) decided to switch to one-month-on/one-month-off for a year. It was, as he put it, to see how things went. If they went well, then we would then switch to three-months-on/three-months-off. After nearly eight months of this, I cannot say they are going well.
After six months my PSA had risen to 0.56—a small enough number but, according to my high school maths, that's a rise of 360%. Shaken by the rapid and continual rises, Jacqui and I scurried along to see my doctor, who told us to continue as we are, and that he would "expect to see some variation". I get the impression that he will continue with Androcur alone as long as possible, this having the smallest number of side effects. For me, the main ones have been breathlessness, irritability, weight gain and gynecomastia, all of which serve daily to remind me of my cancerous condition. When Jacqui called my doctor to ask if anything could be done to alleviate the gynecomastia at least (I find it very embarrassing, and nowadays wear the baggiest clothes I can find), she was told that it was a minor inconvenience well worth putting up with given the alternative—that is, a horribly painful death from cancer. The instruction leaflet that comes with the tablets states that they should be administered "if possible with the simultaneous use of psychotherapeutic measures". I guess that, Trinidad being in the Third World, my doctor's words are the nearest I shall get to psychotherapeutic counselling.
Weight gain is also a major concern, especially with Androcur being a steroidal drug. Don't get the impression that I am obese. At 6' 2", I weigh 182 lbs, which is (I am assured) a perfectly healthy weight. But before all this started, I weighed only 168 lbs. The biggest gain, about ten pounds, came near the beginning, when I was injected with Zoladex to decrease the size of my prostate (as I it needed it!) Since then my weight has drifted up a little, but the slow rate has come at a considerable cost. Thankfully, I am gluten intolerant, sand o eat nothing made with wheat, barley or rye: No bread, no pasta, no biscuits (cookies, to our North American chums). Potatoes are a thing of the past, as are the bananas and mangoes that grow profusely in our garden. Coffee is nowadays unsweetened (I guess I will eventually grow used to that, but it's taking a long time), and sweet drinks are a distant memory. All forms of alcohol and no more. Rice, which is the stapel for many here, is a rare treat—a small portion perhaps once a week. No wonder I am tired all the time; I no longer eat the carbohydrates that give others their energy.
As you know, I grew up in England. Although I like living in the Caribbean, where I can very directly see my labours contributing to the region's development, I miss the seasons with which I grew up. So, Jacqui and I in March took a five day trip to New York State. It was lovely. The trees were just coming into leaf, the daffodils and tulips blooming. The days were warm, but the nights chilly enough to warrant a romantic, open fire in our hotel room. Being in such idyllic circumstances, I let my diet go and ate a few meals of North American ingredients and portions. The mutton chop that could have served three was delicious, as were the oysters and the sushi. I also ate a steak, but, being ever mindful of my doctor's injunctions regarding read meat, limited myself to the 8 oz size.
I was most dismayed on returning home to discover that I had put on four pounds in those five days. How can one do that? A pound of fat contains 3,500 calories. Surely I hadn't gorged myself so much that I had eaten an excess 3,500 calories each day? Some if it, I must admit, may have been water retention. But, despite my draconian diet since, it has taken me three months to get rid of that weight. The online sites I have found on this matter have been little help, merely saying that weight gain is a side effect of many prostate cancer treatments, and that many men (I guess that's me) have considerable trouble losing that weight.
So I plod on, permanently eating a diet somewhere close to South Beach Phase 1 while trying to feel grateful that I have so far been spared any of the more painful symptoms associated with PCa. But I can't help but feel dismayed at the way my life has changed, and will change again once the cancer becomes resistant to the Androcur. And I can't help but feel disappointed for Jacqui. When she fourteen years ago promised to love me "in sickness and in health", we had hoped for more health than sickness. We saw ourselves in a dream home in our retirement (still nearly a decade and a half away), sipping cool drinks as we watched the sun set from our rocking chairs and planned our next holiday. Nowadays I wonder, though I dare not voice the thought to Jacqui, if such a retirement is even going to happen for me. Certainly prostate cancer at such an early age was not on our agenda.
And meanwhile the weight gain and gynecomastia persist as physical manifestations, daily reminders, that all is not well.
I got my latest PSA result on Friday 18th July, 2008, taken at the end of yet another two-month cycle of intermittent treatment with Androcur. On this occasion it had risen to 0.91 (which I calculate to be a rise of 62.5% over the two months). Though dispiriting for me, this was not unexpected.
The hassle this time came in that my Doctor has a new secretary who has yet to learn the knack of delivering messages. (Have I ever mentioned that I named a species of shelled amoeba after my doctor?) I'll leave it to you to decipher which species is his, and which one I named after my wife.) When Jacqui called the doctor's office on Monday July 21st to find out his decision, she learned that he had indeed left a message, but that his new secretary could only decipher the word "monitoring" within it. Jacqui asked that the doctor himself get in touch personally to tell of his decision, only to learn that he would not be able to do so until Friday July 25th. It was a short enough time to wait, but on this occasion the thought of waiting threw Jacqui-rather than me-into a tail spin.
After talking with the secretary, Jacqui for some reason went trawling on the internet for information about Androcur, apparently trying to second guess what the good doctor's decision might be. (I much prefer to say one trawls rather than surfs the internet. After all, one can turn up such wonderful by-catch.) Later that evening she, out of the blue, gave me a tremendously tender hug. (Don't get me wrong; she hugs me frequently; but on this occasion there was something especially tender about the way she did it. I am at a loss to describe that hug. Let's just say there was a whole woman's worth of love in it.)
"Is something wrong?"
"I guess I've just realised something."
"They're not going to be able to cure you, are they?"
I took a deep breath. "Apparently not. All they can do is control it."
"Oh well, at least I managed four years' of denial."
The conversation that followed ranged widely. We talked about the new treatments that are coming along (I remember saying, "They're developing new drugs as we speak"), and Jacqui showed me an online BBC article about the new drug abiraterone, which shows promise for men with advanced PCa. We reminded ourselves that mine is an unusual form of PCa, and told ourselves that the tumor must be tiny-look at all the trouble the medical professionals had finding it in the first place. We talked of the side effects of the drugs that will come next, once the Androcur loses its efficacy, and bemoaned the coming loss of quality of life for both of us. We mulled over my diet-Jacqui taking the matter seriously for the first time-and explored how I can get a full range of nutrients without piling on weight. And we talked this time of what is my main concern right now-the effects the drugs are having on my short term memory. We agreed that I must push ahead with my academic research, if only to try and keep my brain somewhere near being in top gear (although it feels to be permanently in second gear nowadays). And finally we agreed that we must make a concerted effort to pack all the fun and experience we can into life.
We finally spoke with my doctor, who is concerned about the rate of rise in my PSA, and is to consult with his oncologist colleagues and get back to us. Meanwhile, however, we are to continue as we are, with me currently off the drugs for a month, and two weeks to go before I start them again. Oh what an emotional rollercoaster of a life!
So, on that note, I must away. There's a whole day's worth of fun and experience to be had out there, and it's time I got on with enjoying and experiencing it.
On my birthday November I had a PSA test that came back as being at 1.99, up from 1.51 two months earlier. It didn't seem too bad, but my doctor thought otherwise. Early in the Summer, Trinidad opened its very own oncology unit, staffed in part by a radiation oncologist who visits for one week each month from Canada. We were referred to him for a consultation, and things rapidly went form bad to worse--mentally, at least.
He told me that I needed to be considering adjunct treatment, but ruled out further radiation, saying there was too much of a chance of developing a fistula (a hole connecting the bladder and rectum). He outlined several alternatives, such as ultrasound and cryotherapy--neither of which can be done on Trinidad--but then talked at great length about the possible horrendous side effects from each (including, of course, fistulae). Given that I have had radiation already, he thought the side effect probable rather than possible, and made it obvious that these include incontinence and impotence.
What was most dispiriting was his unwillingness to recommend one treatment over another, he leaving the choice to me. I felt furious (although, in that typically British way, I said nothing). I am neither a medical doctor nor an oncologist. Had I wanted to be, I would have led my education in that direction. I expect doctors to tell me what they are going to do to fix me, not leave me to choose. Are they afraid that, should things go wrong, I will sue for malpractice? If I choose and things go wrong, are they leaving themselves in the heartless position of being able to say, "I told you so"?
He told me I had maybe six months to make a decision, then afterwards gave me such a thorough examination that it made my eyes water. There was genuine surprise in his voice when he said, "But everything feels normal." The discussion ended at that point.
I wrote to my own doctor requesting a prescription for my next PSA test, and outlined what had occurred. He in turn telephoned me to support the second opinion, saying that I have six months to decide.
Jacqui and I are left feeling furious. I have no symptoms other than an errant PSA. A DRE revealed nothing. I am only 49, can pee without any problems, have no backache, and have a wonderful sex life (as far as is possible after brachytherapy). Both doctors are willing to jeopardise this in search of an immediate cure, with the distinct possibility of wrecking me overnight.
We contacted various online sites for advice, and the message coming back from people in a similar situation is, don't do it. Not yet. The gentler methods of control have not yet been exhausted. We concur.
We have decided that we shall wait until my next PSA test in January, when we shall visit my doctor to express our dismay and ask, bluntly, Is this the best you have to offer?
Are he and the radiation oncologist merely playing with their latest medical toys, with me as a guinea pig? God knows, I hope not. What happened to the Hippocratic oath and "First do no harm"?
Meanwhile, our lives go on as we struggle to keep the panic attacks to a minimum.
Brent's updates went astray in cyberspace, so here is the compendium:
Miami, Friday, March 28th 2010
I know we are supposed to have faith in our doctors and assume that they are working in our best interests and wish no harm. Sometimes, however, medical practitioners make mistakes - especially when they as yet have limited experience. This is a tale of one of those occasions.
First, a little background. In March 2009, the Androcur with which we had been controlling my PCa finally failed, so I was switched to Zoladex for three months. That was awful - it reduced me to a zombie. I wrote several papers (I am an academic in a publish or perish environment) and sent them away to editors, only to have them returned with apologetic notes telling me that they were not suitable for publication. My doctor, a urologist, took me off the Zoladex and gave me two months to recover without drugs (during which my PSA went from about 3 to 7). While drug free, I read over my papers and discovered what utter rubbish I had written: sentences ended abruptly while arguments wandered illogically and aimlessly along.
In September 2009, I was switched to Lupron, which worked until November, when my PSA began to climb again. We tried it for two more months, my doctor saying perhaps it was some apoptosis going on, but my PSA continued to climb, reaching a high of 3.35 in January.
And now the story. What a rollercoaster of a year 2010 has been so far. In January I was referred to a newly-qualified radiation oncologist on Trinidad for a consult, ostensibly to discover if I could have any more radiation. The new chappie - let's call him Dr No - was initially enthusiastic as he told me that he was taking over my case and was now my primary caregiver. To mine and Jacqui's amazement, he took me off all drugs, telling me that my PCa had become hormone refractory and, on the basis that it had become resistant to Androcur and Lupron, was now resistant to every form of medication. He then ordered a battery of scans - three (CT, MRI and bone scans) on Trinidad and two (PET\CT and ProstaScint) 1,600 miles away in Miami. Thankfully, me being a Brit and my wife having a Dutch passport, we did not have the hassle of getting US visas.
The CT scan showed what the radiologist on Trinidad concluded to be a lesion, probably metastatic, in my lungs. At that, the newly-qualified Dr No got very excited. He told me that my PCa could not be cured (which reduced Jacqui to tears and gave her thoughts of planning my memorial service) and that I should prepare myself for a 10 month cycle of chemotherapy. He handed me a typewritten sheaf of notes on Docetaxel and told me to prepare myself to be treated. Thankfully, this Dr No had the sense to seek second opinions, of which he obtained three (do they still count as second opinions when there are so many?) All said that they were not prepared to call the thing in my lung cancer, [thus demonstrating the importance of getting more than one - or even two - opinions. Diagnosis is not definitive.] and when I had the ProstaScint scan three weeks later, it was determined that the lesion was a mucus plug connected with a cold I had at the time. (By the way, Dr No never told me this - I discovered it later, when reading over the reports myself.) [Thus demonstrating the importance of getting copies of ALL medical reports and gaining an understanding of them]
During the two scans in Miami, we confirmed that I have claustrophobia. One involved a scanner the size of a filing cabinet and as heavy as a concrete mixer hovering over my head, within an inch of my nose. As it was lowered towards me, I was assured by the polite and sympathetic technician that it would stop once a sensor detected me. When it got within two inches of me, I thought, "No it bloody well won't," and freaked out. Obviously the technician had never been in a car in which the brakes have failed. In my imagination I could see myself squashed pancake-flat underneath while the staff stood around the failed scanner, scratching their heads and saying, "Well, it's never done that before." The staff were wonderful, however, a succession of young Cuban nurses coming to chat with me to fill time during the three three-hour scans. Our conversations ranged widely, the trusting nurses opening up and telling me things that I am sure few others know. So, I'd like to take this opportunity to say thanks to the nurses at Doral Imaging (plug plug).
The scans came at a total cost of US$15,000 (thank God for insurance); throw in the airfares and accommodation and the cost was nearly US$20,000. They revealed nothing of value, however - although this does not mean that I do not have metastasis, just that any possible metastases are too small to be detected. One report talks memorably of a lipoma (a benign lump of fatty tissue) on my posterior. In other words, we spent US$15,000 to be told that I have mild cellulite!
With the results in hand, we returned to Dr No, who did not know how to proceed. The results not confirming his earlier opinion, but supporting the three second opinions, and he being denied the excuse to give me chemo, he was flummoxed. He concluded a rambling consult that lasted over an hour by talking of my needing a further consult overseas. Not to worry, he said. He would arrange it, he said. We were to expect to be talking with somebody within two weeks, he said. The two weeks passed and turned into three. We sent reminders as e-mails and text messages. Nothing. Jacqui spoke to him one evening at the end of the three weeks, to be told that I had now moved out of Dr No's area of expertise and that anything he arranged for me from now on, he would be doing as a favour. The day after that, I rang. I was furious at the lack of progress, and lividly told him so in the cold, steely tone at which we Brits excel. I asked, where was this bloody marvellous network of contacts of which he had spoken glowingly earlier? I must have put the fear of God into him, because that got some rapid results- Dr No arranged a consult with a medical oncologist at Southern Baptist in Miami. I am writing this in the immediate aftermath of that consult.
Before leaving for this latest consult, we returned to my original urologist to get my medical records. His demeanour told that he was furious Dr No had taken me off all medication. He reeled off a list a drugs that I could have been given after the Lupron and assured me that he would prescribe some of these (Casodex, seemingly) on my return from the consult.
The doctor at Southern Baptist also expressed amazement that I was not on medication. He reviewed my PSA record since 2002, read over the reports with my scans and dismissed the plug in my lungs as muddying the waters. His conclusion was that there are no indications that the PCa has metastasized and that it is "probably" still confined to my prostate. He has recommended a radical prostatectomy, with sampling of my pelvic lymph nodes at the same time to check for metastasis. For that reason - the need to sample the nodes - he does not recommend cryotherapy. We are right now checking to discover where we can have this surgery done. It will not be on Trinidad: we do not have the expertise locally. We want it to be somebody who does nothing but prostates from dawn till dusk, who dreams about prostates at night, and preferably specializes in salvage prostatectomies.
And that is where things stand at the moment. By the way, we won't be returning to see Dr No.
Trinidad, Sunday, March 28th 2010
I have now been back on Trinidad twelve hours, coming to terms with these developments and girding myself to search for a suitable surgeon. As Jacqui says, bugger the expense - it's time to throw serious money at this.
I want to add an addendum to this report. My students have been an amazing support to me throughout this academic year, which makes me feel that I have finally been accepted on Trinidad. I felt I had to keep them informed so that, if I seemed a little dazed during the courses I was lecturing to them, they would know why. When I first went to Miami for the scans, they gave me some wonderful best wishes cards and a lovely Spanish cookery book (I collect cookery books as a hobby). I could have hugged them - but, of course, it is not allowed for lecturers to hug students in case motives get misinterpreted.
While in Miami to see southern Baptist, I e-mailed a few of my ex-students with whom I have maintained friendly contact after they moved to the UK to further their studies (my students are all way brighter than me and I have always felt honoured to be allowed to teach them). After telling them of developments, I ended by writing: "Anyway, I've got to stay cheerful. Your good news is a great help. It is such a delight to see my ex-school pupils and ex-university students going on to do wonderful things in life. Take care, Love Brent xxxxx."
One student replied, "I am very glad because that [the operation] is one less thing to worry about but in the grand scheme of life it seems unimportant. I am getting confused by your medical team who seem confused. As for the surgery, if it is the best option then I guess it is a must. You have so much positive going on in your life I don't think surgery and recovery is going to keep you down. A life experience like so many others you have passed through. When you and Jackie retire to some distant exotic place with your family of cats and dogs, that surgery going to be a distant memory overpowered by all the good memories. A small chapter in your life book...Just keep positive !!!! I know it is a difficult time with all the decisions you seem to have to make but keep saying that you will be fine believe it and it shall be. The art of positive thinking. Also remember as Winnie the Pooh says, 'When late morning rolls around and you're feeling a bit out of sorts, don't worry; you're probably just a little eleven o'clockish.' ......which means at 12 o'clock you will be back to normal... Love;)"
Another responded, "Aww Dr. Brent, I'm glad your students make it worth it for you!!! We're just returning the favour...? ;) University would have been quite a dull place if I hadn't had an indulgent, interesting teacher to spice it up. 8-) Anyway, I hope everything goes well with your surgery! Got to stay cheerful for certain! I used to say I didn't believe in free will, but I suppose the more practical thing to say is that: if you're dealt what appears to be a losing hand, you still have to play the game the best that you can. Or else, certainly there will be no point. That, I suppose, is the hardest lesson I've had to learn in life. But once learned, everything in life becomes an exciting challenge.... :} Lots of love,xoxox"
One final reply read: "Hi Brent! Thankyou for keeping me up to date. You are always on my thoughts and in our prayers. The church is continuing to pray for you. I'm so glad that you have the opportunity to be seen by the Florida docs and have up to date care. I pray that your surgery will be at the best place for you and you will have the care you need with the best possible outcome!!! In spite of it all you still seem to be busy with work that you love which is wonderful to see. Love you loads Brent! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx"
My response is to think, as I have told my students repeatedly, that if their good wishes and - dare I say it? yes, why not! - love were a cure, I would be dying of an overdose. Their support will surely help me get through the inconvenience of surgery.
It is now a month since I had a laparoscopic radical prostatectomy in Miami on May 18th 2010. I am told that I am recovering well, despite raging incontinence, and I have for the past week been able to do a little sedentary work, including some connected with a visiting exhibition of a Tyrannosaurus (see Video - How A Dinosaur Walked). I could write reams about the operation, but I guess many others on Yana have covered prostatectomies well already. Let's just say that we don't yet know whether the surgeons got all the cancer, but after years of radiation and hormone treatment, the prostate was in such sorry shape that they couldn't see any definite signs of cancer. The seminal vesicles and right lymph node were clear. (They left the left lynph node and nerve bundle in place, so I should be able to have s-e-x again once my body calms down). We should know more once I have a PSA test at the end of June. I am hoping hoping hoping for a good result. If I do get a good result, I aim to turn my experience into a book so that I can help others.
In the meantime, instead of writing about the operation, I would like to share a message I sent to some of my students three days after the prostatectomy. I think it encapsulates how I felt over the first part of this year. The message was circulated widely among all my students; so, although this may seem immodest, I have appended three of their replies.
All the best
This is Brent's letter:
Dear (in no particular order) K_____, T____ and S______,
Jacqui has at last allowed me protracted access to a computer, and the first thing I thought to do was to send you a message. I hope my sending you this does not get misconstrued and land me in trouble. Certainly I would never have received a message like this from any of my lecturers. Does the fact that I feel able to send it indicate how much lecturer-student relations have changed since my student days? Or does it merely confirm my status as your eccentric British lecturer? You decide.
I am writing to say Thank You - thank you for your unwitting support these last few months. That you allowed me to help you in your second year studies in turn helped me more than I think you can imagine. I told you early in your student days that I had cancer (I hope I can write "had" now with certainty). In January of this year, after nearly six years of treatment with drugs following failed radiation treatment, it finally became resistant to all available drugs. A decision had to be made. Did we go to palliative care using chemotherapy? Or did we try to cure it once and for all using the only available method - cutting it out? What we would do was dependent on how widespread the cancer had become.
So began my series of nerve-shredding trips to Miami while I had scan after scan to discover if it had escaped.
During that time from January to May, when the cancer was effectively growing uncontrolled, I frequently thought I was going to lose my mind. Sleepless nights were many, fits of self-pity and depression abundant. That was where you helped. Many times I found one of you online and you allowed me to chat a while away, burying myself in something else for a little while. You must have tired of me pouncing whenever you signed onto Facebook. You have no idea how much our chats helped.
When I came out of hospital last Wednesday, the assistant surgeon spoke with me a while. He told me that they had thought that my operation would be much more difficult than it was. Radiation such as I had in 2004 tends to burn and stick organs together so that any subsequent operation is very risky. It was before my operation thought that there was a very high likelihood -almost a certainty-that I would need such a procedure as a full colostomy, many of my organs having been effectively glued together. Life would be markedly different if I did. As it was, there was virtually no such fusing and the operation was as simple as if I had never been irradiated. I was a very lucky man, the surgeon impressed on me. Something, he said, had been looking after me.
My question now is, how do I say Thank You to that something? (Let's call that something God - it makes life easier.) I have given this much thought these past days while lying supine in bed. I have been given a surplus of talents: I love to write (both poetry and prose) and to compose music; cooking gives me great pleasure; and I thoroughly enjoy geology and palaeontology. I have also found that I have some talent as a teacher. I don't mean merely that I enjoy standing at the front of a class and spouting arcane knowledge while arrogantly assuming that all I say is making sense and being understood and absorbed. As Sir Thomas Beecham once said of orchestral conductors but might have been saying of such teachers, "Any bloody fool can do that and many bloody fools do". Such a type of teaching is just a society-sanctioned, narcissistic ego trip in disguise. I mean instead that I enjoy helping students to achieve their potentials, to do the best they can while developing their self confidence.
It seems to me that for the immediate future at least, the best way I can thank God is for me to throw myself into my teaching. I wonder, can you help me again in this? Over this coming year, I am to supervise each of you in your final year project. I would like to thank you (and God) by helping you as much as I can to get the best mark you can for your project. It will be hard work for you (I am not offering to do your project for you!) It will be hard work for me also. But it would allow me to say Thank You to the something that has looked after me while aiding you also.
Before you get too swell headed over this, there are many others to whom I owe thanks: that I have a huge debt to Jacqui goes without saying. Of the others you know A_______ and K___, but there are still others that you do not: E_____ of Cornwall, A___ in London, and T_____ (a.k.a. my "nearly surrogate daughter") in Edinburgh particularly spring to mind. It has just occurred to me that all of these are women. No matter: I shall have to find other ways to thank them. By the way, should you mention this message to your classmates, can you please also share the following? Before my first trip here to Miami, your group called me into Ty______'s class for a little word of encouragement. I have rarely been so touched, and never before by such a large group all at once. You sentiments made me feel that my efforts as a lecturer are both worthy and worthwhile. Along with the card and cookery book you gave me, I shall treasure the memory of those few minutes for ever.
So, with what salutation can I finish this message? "Yours Sincerely"? "Yours faithfully"? Both those seem too formal. "Love, sloppies and a big, big hug"? I think that will get me into the trouble with the university authorities that I want to avoid. So, let me distill into two words what I really want to say: Thank You.
And here are the replies:
Oh Dr. Brent,
You put a smile on my face & lifted my heart just when I needed it most.... so thank you :D And for God's sake, do what Jacqui tells you to. The worst, and most unthinking and selfish, mean, horrible thing you can possibly do is to not let yourself heal, and then make- dare I say it?- US suffer seeing you suffer!!!!! (I'm sorry. That is quite a harsh rebuke, but I... I feel justified in saying that. I hope Jacqui's scolding was as harsh!) :)
Hi Dr. Brent. I just got your message on FaceBook. Firstly let me say that I was deeply touched to know that we as students have had such an impact on you and have been able to make things a bit easier for you in one way or the other. You are a great lecturer and an even better teacher and you should know that your students respect you greatly for being a refreshing anomaly to what we have come to know as a lecturer.. 'eccentric', as you put it. lol. I can't speak for the others, but it has been a while since a teacher has shown any real interest in me and made any attempt to get to know me apart from academics and for that I owe you thanks. You thank us for allowing you the chance to impart your knowledge to us but we are the ones who should be grateful for every effort you've made on our behalf. Every one of us knows that you genuinely care. I'm sure you have impacted each one of us in some way and that is why you will always be supported by your students. Thank you for making such a difference. Our only wish is that you return to us safely and in good health :)
Nothing but best wishes :)
I am so happy to read this and much more I feel very inspired. The part about "I mean instead that I enjoy helping students to achieve their potentials, to do the best they can while developing their self confidence" is for me all that I see when I interact with you! There are not much people out there like you and much less that use their talents like you do!
I can only guess the hardships that you face and for me you are one of the strongest persons I know, if not the strongest. U are lucky to have Jacqui and such great students! I know how happy you must be now to have this surgery over with :)
I wish you all the best and I really really hope that it all works out for you.
Thanks for always being there and for being so supportive!
Love, sloppies and a big, big hug
(I can say this since on official records I am not one of your students, although in reality I really am!)
My story since my last update has been one of despair. As I left the hospital following my prostatectomy – during which my prostate, seminal vesicles and one lymph node were removed – I was informed that the pathologist found no sign of cancer. Not a single aberrant cell. The whole operation had been a complete waste.
I am not as worried about the waste of money as much as the waste of me. I went from being a healthy, active man to being a physical wreck. I am now 100% incontinent – and let's not talk about impotence. I have had constant urinary tract infections and have spent months at a time on antibiotics, clearing one infection simply to create conditions for another to move in. I used to be an active field geologist; now I cannot bend down without knowing about it for hours after. I am told this discomfort comes from the way the surgeon had to stretch my urethra to compensate for the removal of my prostate. It will, I am assured, ease with time. How much time? It's been eighteen months now.
The result is that I am angry. Very angry. I feel that I was used as a guinea pig with no thought of my quality of life.
To improve the quality, I went to see a Chinese doctor for traditional Chinese medicine. She sticks needles in me once every fortnight and thoroughly overhauled my diet (no wheat, dairy, caffeine, sugar, citrus fruit; very little meat). Although this leaves me with little spare energy, I do feel better for it – and at least empowered by the thought that we are doing something to combat the cancer's growth. She also has me taking extracts from ling zhi (reishi) mushrooms, grape seeds and olive leaves to support my immune system. Is this why my western doctor, when he last saw me, said, "You know, for somebody who was diagnosed seven years ago, you look to be in remarkably good health"?
After six months break during the surgery, during which time my PSA rose to ~27, I was put back on Androcur. It worked. All I had needed was a break from it, my doctor told me. I was furious, wanting to scream, "Now you tell me!" My PSA fell to ~7 last July, at which time I was given a break from the drugs for three months. It went back up to 27, so the Androcur was brought back. At the last reading, just under a month ago, it had been driven down to ~14.
I had said once that I would write a book about my experiences with cancer. I tried. I really tried. I wrote about seventy pages. Then I discovered what a depressing topic it is, writing about two failed surgical interventions (brachytherapy, prostatectomy) and my experiences with drugs. Despite the doctors' assurances beforehand, there has been no happy ending – yet?
"But imagine if we had done nothing," my main doctor says.
I want to retort, "But imagine if you had only used the drugs – I would be able to climb stairs without parts of me that I cannot mention in public aching." (Imagine being in pain when arriving at a staff meeting and not being able to say anything.)
Jacqui is angry too. Somehow, she says, the cancer metastasized beyond the usual first points of spread – the prostatic bed, the lymph nodes, the seminal vesicles. She thinks that this may have happened way back during the saturation biopsy, when cells torn loose would have been released into the blood stream. [The question of cancer being spread by normal biopsy is one that is raised fairly fequently. There is no good evidence to show that this occurs. Bearing in mind the millions of biopsy procedures carried out in present times, if these were associated with metastasis, there would be more men diagnosed with metastasised disease.] So where are they now? We have no idea. My western doc guesses that maybe they are in my liver. Who knows?
The discomfort from my surgery has at last abated and, following five months in Canada on sabbatical leave, I have not had a single UTI (Urinary Tract Infection) on my return to Trinidad. I think the change in environment may have given my body a chance to recover the ability to fight UTIs somewhat.
I am currently on Lupron, which had to be flown in by FedEx because the island's supply had run out. That follows three months on Casodex, during which my PSA rose alarmingly, and one month on Siberstrol (sp?), [Most likely DES - Diethylstilbestrol (formerly known as stilboestrol) - a synthetic nonsteroidal estrogen rarely used in the US, but used in other countries because of the low cost] which made me extremely nauseous and wrecked my ability to work. At least with the Lupron I am able to concentrate. I hope this isn't a sign that it's not doing anything!
My incontinence has at times been a source of ambarassment: not all adult nappies are as dependable as they make out. Sometimes the manufacturers apply just a little too much glue, which tears small holes in the fabric as the nappies are unfolded. These then act as sources for leaks. This is most disconcerting when it happens in public. Also, it is disconcerting that I am spending a fortune on these things, which are not covered by insurance. Factor in the various supplements I take to support my immune system, and the deductable from my insurance for doctors' visits and my medication, and the financial cost of my situation is considerable. Talk about "shoot the victim!"
Since my surgery I have been on various types of ADT (Androcur, Stibestrol, Casodex, Lupron), each of which appear to work one month and not the next. Although my doc (a urologist) professes to prefer intermittent hormone treatment, he most recently kept me on drugs for eight months straight, starting last August and progressing through several types. When the last of these, Lupron, evidently failed in April, when my PSA was 19.2, I put my foot down and insisted on a break. My doctor had showed increased and infectious anxiety and confusion at the failure of each drug, and I found that very difficult to live with. When in May 2013 he told me he wanted to 'try' a new drug that cost more than I earn in a month and, not being available on Trinidad, might not be covered by my insurance, I finally plucked up the courage to say no. I have been off all drugs since then. Right now I feel wonderful -- I can think much more clearly than I have in ages, am losing some weight and even have a love life. I don't know what my next PSA reading will be. My next test is due in early August. However, my doc is going to have to answer my questions clearly if he thinks he is to put me back on drugs soon. My first question is, why does my PSA rise so rapidly -- far more so than is to be expected even with agressive cancer -- while I continue to look and feel so healthy?
I took an entire year off drugs and elected not to have any PSA tests between August 2013 and March 2014. My doc had begun muttering about how unreliable they are, although he still reacts worryingly when my PSA level has gone up. So, I had what was mostly a wonderful year with few tests. I was able to think clearly and produced what I think is some of my best work ever (although history might decide otherwise). My brain was so clear that I was even able to delve into some philosophy of science, showing from the literature how ontology (the making of assumptions prior to an investigation) confounds the reproducibility of scientific conclusions. I have pondered asking my doc if he knows what ontology is.
During that year I started having problems with discomfort in my perineum. When this began in July 2013, I put it down to the development of yet another UTI. Despite self-medicating (we can buy antibiotics over the counter here on Trinidad), the problem worsened. Sitting down became uncomfortable (flying was particularly stressful, plane manufacturers having cut back on the amount of padding in their seats), and the discomfort would worsen through the day. I began to spend significant amounts of time lying in bed because that at least is comfortable. I can walk without a problem, but the act of standing up induces perineal pain that lasts for a few minutes before subsiding. In October I went to see my doc about this, and he told me that it is due to the growth of post-operative scar tissue. This was to be expected, he continued, after surgery on top of brachytherapy and with the many subsequent UTIs I have had. I was not amused – nobody ever mentioned this as a possibility prior to my surgery. However, my doc told me there is little he can do. He prescribed Flomax for a few weeks, thinking that might ease the problem. It did marginally, but the discomfort came back as soon as I stopped. So, I am now on Flomax permanently (we can buy that over the counter too) and spend much of my waking time standing. I wouldn't mind, but it is not easy working at a microscope while standing up. Jacqui bought me a cushion to sit on, specially designed to relieve stress on the perineum. This provided some relief, so we bought another, such that now I have a peripatetic one for use in the car and at home, and another for the office. That I have these makes me feel, once again, that I have been prematurely aged by my surgery. What next?
By March 2014, my PSA had risen to 97 ng/l, so my doc put me back on Androcur for a month – although this time on a daily dose of 200 mg. This worked, my PSA falling to 32.7 ng/l. Pleased by this result, my doc has put me on the drug for another month. We shall see if it works again. I feel fine, however – apart from the scar tissue problems – and have not shown any symptoms that can be directly related to my tumour(s).
When I went to see my doc in April 2014, I vented some frustration. We see him for about ten minutes when we do, he writes his prescription, and away we are sent. There is no follow-up, no support, no consideration of what this treatment and unpredictability is doing to Jacqui and me mentally. Most healthy people my age are by now dreaming about and planning for retirement (if they are sensible, that is). We cannot do that. Instead, we live from PSA test to PSA test, wondering what the next result and its implications are to be. It feels at times as though our ability to wonder about our future together has been stolen from us. Some may see this as a blessing; we are encouraged to live in the moment and appreciate each other from day to day. That much is true, but it is a stressful way to have to live. My doc offered to arrange psychiatric treatment (although we do not have on Trinidad a psychiatrist familiar with cancer). I told him in no uncertain terms that that is not what I want. What I want is to know what the hell is going on! But the truth is, he does not know. Nor does he want me to have more scans just yet to try to find out. He tells that that he does not wish me to have any more scans that is absolutely necessary, they involving such high levels of radiation (a CT scan bathes us in ~500 times more radiation than does an x-ray).
One last little aside. This would make me chuckle were it not so infuriating. In early May I went to see a dentist for a check-up. He was only a young chap – perhaps in his early thirties. I dutifully filled out his form, which required that I tick a box declaring that I have cancer. He got very excited when he saw a patch on my jaw x-ray surrounded by a rim of white. That, he told me with delight in his voice, was probably my cancer. Repulsed by his tone – it is always the young ones who express a sickening enthusiasm when they learn of my case –, I requested a second opinion. This came back telling me that I have an infection in my jaw at the site of a poor tooth extraction (the tooth was extracted in 1979). The rim of white is my immune system fighting the infection. There would be no such rim around a mandibular cancer. I could smack the dentist. Jacqui and I have been through 12 years of hell with my cancer. His glee, whether he had been right or not, just added to the sense of hellishness. Why is it that the medical professionals seem to forget that I am more than a tumour – that I am a human with all the mental attributes that go with being a person?
First of all, I remain asymptomatic (and hope to for a long time yet). I have aches and pains, some of which are to be expected in an aging man, others of which are due to my surgery. Sitting down, and the acst of sitting down and standing up, cause me discomfort, so I carry a cushion everywhere to sit on.
That I continue to look healthy is a problem for me. Few people take seriously the challenges I face as a consequence of the drugs I am on. This is especially so at work, I feel. I fall asleep in meetings, for example, because the drugs make sleeping at night such a challenge. Others do not take this kindly. Also, I cannot always readily remember what was said from day to day or, more especially, what I said. Sometimes the situation feels overwhelming, particularly when I am given yet more responsibility.
Matters became so uncomfortable at work that I finally sought psychiatric help. I was diagnosed as having "anticipatory anxiety." Well, who wouldn't be anxious after the experiences I have had? However, I was told that I am otherwise mentally healthy, and no drugs were prescribed. I am thankful for this. I don't want any more of those than is absolutely necessary.
My PSA at the end of February was 145 ng/ml. (My doctor unwisely said at the time that "we are losing control of the PSA". Firstly, "we"? Secondly, what a wonderful thing to say to an anxious person.) Two months of Androcurr brought it down to 50.6 ng/ml. I have now had one month of Stilbesterol and am awaiting the results from a blood test following that.
Meanwhile, I am doing as the psychiatrist recommended: concentrating on what is important to me -- my wife, my research and dreaming of early retirement.
Just to bring this up to date, I received my latest PSA reading (17.5 ng/ml) with a measure of relief. At least the Stilbesterol is still working to some degree. We have found from past experience, however, that it does not work two months in succession. I am to see my doctor on Monday, who has talked of me taking Firmigon (Degarelix). Looking up this one online, I find that the possible side effects are:
- Back pain.
- blurred vision.
- flushing or redness of the skin.
- hard lump.
Oh boy, what joys to which I can look forward. As if I don't have enough anxiety already!
My doc was delighted with my result, and so has prescribed another month of the same (Stilbesterol). I pointed out that it has not previously worked two months in a row, but he wants to try anyway. I guess it is better than the Firmigon and all its possible side effects. He has also prescribed Cataflam for the discomfort that I have sitting and flexing as I stand up. We shall see if that puts a dent in it. I have lots of meetings this week, with lots of sitting involved, so any relief will be much appreciated.
I have since the end of 2015 developed pain as I transition to standing up. On a scale of 1 to 10 it is getting up there, despite that fact that I now sit on a specially designed cushion at all times. Although I sit on this cushion, the pain is awful if I sit on anything hard. Aeroplane travel is awful. Where did all the seat padding go? After flying, I need several days to recover.
My doc originally ascribed this pain to the accumulation of scar tissue from dying cancer cells as a result of my hormone ablation therapy. When I eventually impressed in him that the pain was effecting my ability to work, he became Mr. Action Man, sending me for bone and CT scans. These found nothing in the pelvic area. However, the CT scan found a mass at the base of my left lung. So, I was referred to a chest doctor who had a chest CT conducted. This found masses in both my lungs, but blood markers said these are not lung cancer. Nor does he think they are prostate cancer, as this is not the usual site to which PCa first metastasizes. So, I am in late August/September to have open surgery lung biopsies to discover what the masses are. I personally do not rule out PCa, as mine has been a most unusual type from the beginning, having such things as a PSA doubling time as short as 17 days! My PSA has been as high as 343 ng per ml.
I must admit to being quite nervous. My type of PCa is an outlier (i.e., not the most common type), and the medical community has been uncertain how to treat it. The coupled radiation and later surgery, both of which failed to cure me, have left me physically compromised. I am concerned that surgery on my lungs will leave me even more so. However, the docs tell me that doing nothing would be folly, so I have no choice. Ho hum.
Meanwhile, the pain I get on standing goes unaddressed. It feels like smoke and mirrors, the matter of my lungs being meant to distract me from the soft-tissue pain in my pelvic area. If that is so, then it does not work.
It has been an age since I updated my story, in part because it becomes so dispiriting to write when one feels not to have any worthwhile. positive news. At one time, I would have updated my story no matter what the news, but nowadays I find positivity is necessary, and maintaining a cheery frame of mind can be a challenge. My doc once told me that a positive outlook is vital for continued success in this game, so I generally avoid anything that might detract from that -- which includes updating this story.
I continue to look and feel healthy -- other, that is, than the pesky side effects from the medication and surgery, the latter now seeming an age ago. My doc tells me that, to look at me, you would not think I have a problem with prostate cancer. In fact, my PSA has been as high as 430 ng/ml. Because I look so healthy, though, the people with whom I work seem not to appreciate the gravity of my situation. I find stressful their expectations that I can work as I did, say, ten years ago.
The past 12 months have on more than one occasion been a mental hell, my cancer becoming sequentially resistant to the drugs I had been on since 2004 (Androcur, Stilboesterol, Lupron, Zoladex) and my PSA rising at a meteoric rate. It has at times risen with a doubling rate of weeks, which I am told shows how aggressive are my tumours. As mentioned in my previous update, it is suspected from recent CT scans that my metastatic tumours are located in my chest. I met a lung specialist who wished to biospy (as I call it) my lungs. Upon firm questioning, however, he finally agreed that there was no surgical intervention able to rid me of the lung nodules -- of which there are apparently many --, so I declined his kind and expensive offer. (Indeed, he admitted that he wished to know for his own curiosity!) Knowing where my cancer is located is of no comfort if it does not change the treatment options. In addition, a lung biopsy is a major undertaking compared to a prostate biospy, with an uncomfortable recovery time of six weeks even when without complications. My body has been through enough medical trauma already. I currently have 100% urinary incontinence (controlled using an elegant if embarrassing clamp called a DribbleStop), and have no wish to add breathing problems to that any sooner than is vital.
All I can say is that I felt a rising sense of panic over those months and did my best to cope as I always did, by burying myself in my research or that of my grad students. This I did even when my fellow staff and my students thought I was away on extended holiday. (My enviable job is such that I am every third year allowed 13 weeks study leave, and this year was one such year).
Now I am on a drug that is new to me, Zytiga, and will stay on this until it too fails. For the moment it is working marvelously, after only one month bringing my PSA down to a level (37.50 ng/ml) that my doctor found astounding. Once it does fail, though-- and we have no idea exactly how long that might be --, we shall have to move to the chemotherapy (Docetaxel) that most people associate with cancer treatment. I have read that Zytiga has been found to work between six months and six years, with a mean time of one year only. I am not reading too much into the one month's success, as that is how the other drugs affected me this past year; they would work wonderfully for one month, and then fail utterly the next. I learned to celebrate the months they worked, then grit my teeth, suppress the panic and move forward after the month in which each drug failed.
I continue to work, and am enjoying my research tremendously. I am glad about that, as I feel it is important to have some ongoing aspect to one's life that drives one to get up in the morning and keep going. There is some financial stress, however. My drug costs TT$29,600 per month. (At the moment a Trinidad and Tobago dollar is equivalent to about 6.7 US dollars.) The insurance that comes with my job covers 80% of this cost. The 20% co-pay is a fair chunk of my salary.
I subscribe to the HealthUnlocked prostate cancer group, with its daily messages from other patients. Today one wrote of his failing treatment, stating, "I've known this would come, but I feel just a tiny bit more mortal this week." I sometimes get that feeling too, but do what I can to avoid it, adopting when I can what Jacqui calls a Polly-Anna outlook on the world. There is still much I want to do in life (I am, for example, developing an interest in astronomy and want to see a nebula, a galaxy and other such goodies for myself), and the urge to do those things helps keep me going. For anybody who is asking why I cannot just nip outside and look at these deep sky objects, by the way, the amount of light pollution in Trinidad makes it impossible. I shall have to wait until I am somewhere with a nice, dark sky. At least, given my insomnia, I will find no shortage of opportunities to indulge that interest!
Let me now write a little about the pain I get from my surgical scar tissue. My doc ignored this for the longest while -- perhaps because I did not explain as forcefully as I might. When I eventually told him, however, that it was affecting my ability to work, he became all action. As mentioned previously, I was sent for a CT scan (which found the nodules in my lungs but no cause for my pain) and put on Olfen once a day and Ponstan twice. Those drugs did the job for a while. I began, however, having uncontrollable diarrhea after eating, which went on for many weeks and caused me to lose about 3 kg. I began to show signs of malnutrition also. I would have to time eating so as to fit around this diarrhea and my work, coming home to eat in the evening, spending much of the night on the toilet, and grabbing snatches of sleep when I could. This led to yet another CT scan, this one of my bowels, preparation for which required that I stop all food for 3 days (I lived on jelly and water). Jacqui had me stop the painkillers as well. What amazed was that the diarrhea ceased altogether in that time (although the pain, as expected, came back). A little research uncovered that Ponstan when used for an extended period wrecks the ability of the intestines to absorb fluid. We discussed this with my doc, who instead now has me on the Olfen once daily, plus huge doses of vitamin B -- 20,000% of my RDA daily. This has kept the pain at bay (though I know about it if I skip a day), but comes with a strange side effect; when I lay down, I get pins and needles in my hands. That can make sleeping a challenge -- but then, I already have insomnia from the Zytiga (plus a drumming sound in my ears that makes sleeping challenging). So, I snatch sleep when I can, living on cat naps. Incidentally, my doc -- and I agree with this -- prefers not to put me on any sleeping medication. The PCa drugs challenge the liver enough as it is, and adding yet more drugs will only stress it even more.
And that, for the moment, is me, soldiering on and looking for positivity wherever I can find it. Long may that continue. My apologies that this is so poorly written -- I see I have used the word "challenge" over and over, for example. I am too tired to want to spend time looking up alternatives in a thesaurus.
JB's e-mail address is: brentforam AT gmail.com (replace "AT" with "@")