This article appeared in the Fairfax press today. It contains some background about a new prostate cancer treatment. It also gives some insight into which treatments are and are not brought to market by the handful of pharma companies that control the development of new medicines.

I had heard about lutetium through the Prostate Cancer Foundation of Australia (linked in the Resources section of this blog). The following excerpt from a paper given by Professor de Bono at the European Society of Medical Oncologists’ conference in September 2017, is lifted from a message to a PCFA discussion list. The paper concluded

this phase II trial demonstrates that 177Lu-PSMA treatment for patients with MCRPC who have failed standard therapy provides encouraging response rates with acceptable toxicity, in addition to improved QoL and pain reduction. Based on this trial, we eagerly await the results of larger studies with long-term follow-up.

Some glosses:

• MCRPC = Metastatic Castration Resistant Prostate Cancer
• QoL = quality of life

Hormone therapy, also known as androgen deprivation therapy, is basically chemical castration. This is one of the “standard therapies” that have failed those in the lutetium trial. In other words, lutetium is, at present, a last resort. (Not that this makes it any less desirable for those participating in the trial!)

The discussion attached to The Age article linked above had an interesting further observation about PSA testing. (One needs to log in to the web site to read this discussion.) One of the posts claimed that the PSA test was a less accurate predictor of prostate cancer than a biopsy. A response observed correctly that, for men in whom cancer had not been diagnosed, a high PSA score is not necessarily an indicator of prostate cancer. In men in whom prostate cancer has been confirmed, however, PSA tests are routinely used to assess how effective a treatment has been.  So in terms of how “good” the PSA test is, it depends if one is talking about it used as

• an initial screening test, or
• a test in men with confirmed prostate cancer.

PSA should not solely be relied on as a screening test. It is routinely used in the latter context.

I have had about five PSA tests in the course of my treatment so far, and a biopsy as well. The PSA sends up the red flag for the possible presence of cancer, the biopsy  reveals the location and type of cancer. You wouldn’t do a biopsy without an elevated PSA score. (In my case, this was confirmed by a second PSA test). The PSA can be done in a few minutes at a pathology centre; my biopsy was performed under a general anaesthetic. One can’t replace the other. They do different things.

Preface: I emailed the following to immediate family. I have reformatted it a bit, but there is no new information, so they can skip this post. For the rest of my extensive readership, I should explain that I wrote this originally on my phone, hence the reference to auto-correct.

My beloved and I saw Pat Bowden, the radiation oncologist, today. The news was not too bad. The main points:

1. The PSA is still elevated; I didn’t write down the score, but from memory it is 3.9 or so.
2. However, the rate of increase is slower than before. This shows that the radiotherapy has had an effect. This effect can continue and increase over 6-12 months. Therefore what Pat suggested was to have another PSA test in 3 months, to see where we are then.
3. The main aim of the radiation therapy was to delay having hormone therapy. Apparently only 30% of RT patients need to go on to hormone therapy. The side effects of hormone therapy (also known as androgen deprivation therapy) can be such that delaying it is a good thing. Also I gather that the more treatments that are used, the fewer shots that remain in the locker.
4. The next PSA test will determine what happens next. Sound familiar? It is really like a game of snakes and ladders. I guess this was a lake, or possibly a snadder. (God knows what auto-correct will do with that.)
5. Question: Could I have another round of RT?
   Answer: Yes. However, this is contingent on another elevated PSA test, then a further PET scan to show what spots need zapping and where they are. Only patients with 5 or fewer spots can have RT. Otherwise the spots just come back elsewhere. If more than 5, it’s time for ADT.

Two typos when putting the title in and a missed letter in this sentence. I can’t wait to get rid of this Bluetooth keyboard! The batteries keep running out, so unless you have some freshly charged up, you have to stop using it. (Of course you can’t charge them in the keyboard itself.) I have had four rechargeables in the charger for about 24 hours and none of them is charged! Thank goodness I have ordered a Samsung Galaxy S3 tablet with a proper keyboard cover. I had to order them separately, an intensive search not turning up a retailer who sold them both at a non-usurious price. Why didn’t I get a Windows convertible device like a Lenovo Yoga? We have a Chromecast and it is convenient to have an Android tablet with which to control it. Why not get an Apple tablet? See the previous comment. We both now also have Android phones, so are more invested in that ecosystem.

Now that I have that off my chest, I was intending to write a notice about Norman Doidge’s book The brain’s way of healing itself. The title makes it sound a bit New Age, but Norman Doidge is a psychiatrist, researcher, author etc. In fact neuroplasticity is a pretty mainstream theory about the brain. It is based on the idea that the brain can change its own structure and function in response to mental experience. Consequently, brain functions such as movement can be controlled by regions of the brain that aren’t generally used in these functions. (One of the case studies featured a patient who had had his entire right brain hemisphere removed. He recovered the functions normally controlled by this hemisphere.) The blurb from the book describes it as the most important development in our understanding of the brain and mind since the beginning of modern science. 

This theory has a huge number of interesting applications in fields such as pain management, reduction in the symptoms of Parkinson’s disease and of MS. There is quite a bit also about the use of laser light in healing a large range of ailments, something used a great deal in the former Soviet Union. In fact chronotherapy was known to the ancient Greeks, and was revived by Florence Nightingale, who observed that patients healed faster and better in well lit rooms.

I expected the book to be quite theoretical. It does have chapters explaining the neural basis of neuroplasticity, but there are also quite lengthy case studies of people who have had treatments based on this idea to themselves. None is more fascinating than that of John Pepper. A successful businessman in South Africa, he was working long hours with a high amount of stress when he contracted Parkinson’s disease. The treatment of Parkinson’s in South Africa at that time was based on the theory that a PD patient could only deteriorate. This deterioration could be held at bay for a time with the use of the appropriate drug therapy, but this treatment was only delaying an inevitable decline.

Pepper was used to doing lots of exercise, but found that, as the disease progressed, he could do less and less. He sat in a chair for a year or two, feeling sorry for himself. Then he decided to try walking as a therapeutic exercise, and joined a group set up for that purpose in Capetown. He found that, if he walked in a very conscious way, so that he concentrated on avoiding the shuffling gait characteristic of Parkinson’s patients, his energy, co-ordination, and agility improved. When Norman Doidge met him, Pepper took him for a walk to a beach where penguins nested. They both scrambled through a narrow rocky passage and over huge boulders covered in slippery penguin dung. Pepper was in his seventies at the time. From this expedition and the conversations he had with John Pepper, Doidge was in no doubt that the latter was managing his condition in a remarkably successful way.

Subsequently, some neurologists have cast doubt on the idea that Pepper actually had Parkinson’s at all, holding that he instead had Parkinson’s syndrome, a related but less severe condition. This seemed to be based on the fact that he had improved functionality, something that was supposedly impossible for someone with full-blown PD. Ergo, he must not have PD. (This view is not held by all neurologists.) It would appear that the exercise was an important part of the lessening of his symptoms, but more so the strengthening of the neural pathways brought about by his concentration on how he was walking – a sort of applied mindfulness. Pepper does not call this a cure, and has never tried to encourage PD patients to stop taking their medication. His PD symptoms return to an extent when he is fatigued, stressed, or preoccupied; he is, however, much more mobile and energetic than before.

None of the therapies described in the book requires surgery or medication. (They don’t require cessation of the medications prescribed for the condition.) Patients using neuro-plasticity based therapies often need to practice them intensively and consistently. This obviously is a different way of healing than getting a prescription from a GP; it requires the patient actively to participate in their treatment. The book is not a diatribe against western medicine – Doidge is a GP and psychiatrist. All the discussion of medical matters in the book is well documented. Neither suspension of disbelief nor buy-in to any ideology or religion is required. This is a great book for anyone interested in being actively involved in their health.

 

Radiation session number eight today. I had an anxious moment in that the session was scheduled for 12.20, and the appointment with Patrick Bowden, my radiation oncologist, at 1.00. Normally this would have left plenty of time, Pat being just one floor above the clinic in Epworth Centre. However, there was a delay, so I was imagining having to go up in my treatment gown! (These are just a conventional dressing gown, thankfully less revealing than the standard hospital gown that fastens at the back.) However, the clinic reception rang Pat’s office to alert them that I might be delayed. I got there almost on the dot, and he was running a bit late, so it didn’t matter.

The meeting was just for him to check how I was going with the radiation treatment, and allow me to put any questions to him. I said that I wasn’t having any side effects from the treatment that I was aware of (which of course is terrific). I will have a further meeting with him in early May, at Epworth Box Hill this time. A week before that I need to have another PSA test. I gather, although this wasn’t stated at the meeting, that this test will indicate whether the treatment I am having has been successful or not.

Pat refers to metastases as “spots”; the radiation assistants do likewise.  (I guess this is a simple and non-threatening term.) At our previous meeting he had said that radiation treatment patients fall into three categories:

1. Limited or no spots;
2. Lots of other spots over time (I infer that “other” means “different to the original ones”); or
3. A few spots, then successive treatment cycles.

Today I asked him when he would know into which category I fell. The answer: after the next PSA test. (At least, this should reveal whether I was in the “bad” category, as he called it.) So there is more waiting involved.

I am thinking of the scene from Wagner’s opera Siegfried in which Mime and Wotan get to ask each other three questions. (Wotan is disguised in this opera, incidentally, as the Wanderer.) An incorrect answer is supposed to forfeit the responder’s head. Wotan/the Wanderer gets his answers right, of course, but Mime gets one wrong. However, Wotan lets Mime keep his head.

This isn’t an exact parallel because it’s me asking the questions, but my head that could be forfeit. The fable is instructive, however, as it shows that asking questions, and getting answers, can be a dangerous business. I suppose I should stop asking questions before I get the wrong answer! However, for practical reasons I need to get the answer (or answers).

The delivery of the treatment at Epworth, incidentally, has been very kind and solicitous. I even got to hear some Wagner during yesterday’s treatment; just a selection from one of the internet radio stations. Fortunately, it wasn’t the bit from Parsifal about the king with the wound that never heals. My beloved drove in for the meeting with Pat (we got the on-site parking for free). Then we had lunch in Burwood before she had to go back to work. Radiation treatment gives you a fair appetite!

We have had a recurrence of the hot weather, but only high twenties, and cooler at night. I went for a walk this morning, when it was still cool. Before setting off for Richmond I had time also to put out a couple of loads of washing, have a coffee, and water the plants. (I had given everything a feed the previous day with a Seasol/Charlie Carp mixture.) Everything is looking good, except that the bamboo is getting very bushy low down. I must photograph it and send it to the garden designer to see if we can cut them back or tie them up a bit. (The latter might be difficult as they keep putting up new shoots.)

My beloved has reminded me that my readership is impatient to hear about how the radiation therapy is going. Enough literary stuff! Part of what follows is based on an email message to a family member. Why try to improve on perfection? 😉

I have had three sessions of radiotherapy so far and haven’t experienced any side effects. I felt a bit out of it after Monday’s, less so after yesterday’s. From what one of the technicians said (or possibly the nurse), if one experiences side effects,  it will be toward the end of the cycle. This makes sense as the radiation load would have had a chance to build up by then. The major effect seems to be fatigue, but as I say, I haven’t had that yet. Getting in and out on the no. 75 tram is very easy. I have appointments now either around lunchtime or early afternoon, so the trip is quicker.

The major issue I have had was setting aside enough funds to make the payments. You get invoiced every Friday at the clinic, part of a major Melbourne hospital. The payment is done on a different basis than at the GP’s, where they usually take out the Medicare rebate at the point of purchase, so only the net amount is payable. Here one pays the full cost up front, then the clinic applies for the rebate on your behalf. (On the first day I had to pay for the measurement service carried out last week, before the start of the actual radiation.) However, over 83% of the up front costs are rebated. This happens quickly as well – Monday’s rebates were in our account when I checked that evening. So I will just move some funds around as required. I am thankful for all this electronic banking, that we have the money available, and for having a health system that makes these things relatively affordable.

I am having ten sessions, so another seven to go. Three sessions left this week, five the next, Monday-Friday. (There is no radiation at the weekends.) Each session is uneventful. You lie down on a metal stretcher-type of thing, with blocks under your knees and head. The stretcher is in front of a huge machine, shaped a bit like an oven, with various bits hanging over the stretcher (hard to describe, obviously). The assistants get you precisely positioned; one becomes surprisingly used to being moved around like a parcel. (It’s best to let them do it than try to help them, as otherwise one gets more out of position.) They tell you to lie as still as possible, then they go out of the room and the overhanging bits start moving around. It is much less noisy than an MRI machine – quite quiet. One has no sensation of warmth or anything. After 10 or 15 minutes they come in and tell you “All finished”.  I am having a sit down with the radiation oncologist next Thursday, and will pass on any news.

You will have heard by now that Stephen Fry has prostate cancer. This was announced by a Twitter video; try this link. (Thanks, Jane, for alerting me to this.) Apparently he had a radical prostatectomy – a robotic one, not an open like mine – in January. (Radical, as you aficionados know, is where the pelvic lymph nodes and various other bits such as the seminal vesicles are removed as well as the prostate.) He also has a Gleason score of 9. His cancer was first diagnosed from his PSA test. Along with millions around the world, I wish him well in his recovery. I especially wish him well for lending his public profile to prostate cancer.

Stephen Fry’s revealing his diagnosis is timely because of the publication of an article in The Age critical of prostate cancer screening programs based on PSA testing. The author, Paul Glasziou, is the professor of evidence-based medicine at Bond University and a GP. He declared that he had never had and would never have a PSA test. You can read his reasoning, and the comments that have been made about his article, at The Age.

As one of the commenters pointed out, Professor Glasziou is viewing the issue at a population level. Seen from this perspective, there is no doubt that surgery  based on PSA tests has been carried out when it has been unnecessary. Governments therefore have reason not to fund screening of the at-risk male population based on this test. Because Professor Glasziou is viewing it on a population level, it is therefore irrelevant to respond with anecdotes about individual cases of prostate cancer which were detected by a PSA test. He is talking about populations, not individuals. (However, he did extrapolate from his population-based findings to decide a course of action for himself.)

To quote one of the pieces of evidence from his article: PSA testing might only allow two men out of every 1,000 tested to avoid metastatic prostate cancer before the age of 85. Looks like a bad bargain for governments to fund! However, you’d feel differently about it if you were one of those two guys. This is really the dilemma for men. Do I have the PSA test and have an unnecessary operation which leaves me incontinent and impotent? Or do I run the risk of getting killed by a cancer that could have been stopped if it had been operated on when diagnosed?

The PSA test does open up a Pandora’s box, leaving men in the impossible position of having to decide on a course of action for reasons that they, not being physicians, don’t fully understand. It is a good illustration of Sartre’s existential angst: being forced to make a choice in the absence of any guidelines as to how to choose. The Mayo Clinic has what seems like an even-handed treatment of the issue in a document aimed at men considering having a PSA test. (This document has a date of October, 2015, so has been fairly recently updated.) Their conclusion: “talk to your doctor”. I would add two extra recommendations:

1. read as much information as you can from reliable sources, and
2. go to a survivors’ group and talk to those who have been through what you are thinking about.

For myself, I don’t regret having my PSA test done. My thoughts on this are contained in a letter I wrote to The Age, which they didn’t publish (although they did publish another pro-PSA letter). Bear in mind I only had 200 words in which to summarise the issues! My letter is pasted in below.

I would like to comment on Paul Glasziou’s article about PSA testing. My comment is based on experience. I have a Gleason 9, early stage 4 prostate cancer. I had no symptoms, so this cancer would not have been detected if I had not had a PSA test. After the test, a biopsy and several scans were used to identify the aggressive nature of this cancer and its extent. So while the PSA raised the red flag, my decision to operate on my cancer was based on these biopsy and scan results.

Men need to realise that prostate cancers are not all the same. Some are much more aggressive than others. Highly aggressive cancers like mine need different treatment than benign ones do. The age at which the cancer is diagnosed also affects the treatment required. Because I am in my early sixties, the cancer had more time to grow than if I had been diagnosed in my seventies. Left untreated, it would have killed me.

Having a PSA test led to early diagnosis of my cancer. So men need to think carefully before deciding not to have this test. You cannot act if you don’t have information.

I now have a confirmed start date, kind of, for the radiation therapy. It is to start the week beginning the 26th of February, but not necessarily on the Monday. The start day will be confirmed either when I have the measurements done (on Tuesday 13th), or subsequently. There is only one stereotactic radiation machine in the Epworth system, at Richmond. (No doubt it cost a bomb, so the most needs to be gotten out of it.) I can only think they need to optimally schedule that machine, and so they are giving themselves, perhaps, time to reset it for patients with different requirements, and a bit of wriggle room in general.

Anyway, it is good to know approximately when things are going to start. I will see how the tram goes on Tuesday for getting in there.  It will be possible to be refunded the car parking charges for the therapy itself, but not for the measurement session, which is only a one-off. At least we have a break from the heat! It was quite cool last night.

I have been a bit deep in a spreadsheet, trying to figure out what combinations of heating and cooling would be least expensive to run. We have an evaporative cooling system, which is about 16 years old, and gas ducted heating, probably of similar vintage. (I will find this out from the manufacturer tomorrow.) The former needs a service, but it is probably more cost efficient to replace it. Assuming the heater is also in need of replacing, I have worked out that the cheapest thing (in terms of running costs) would be a reverse cycle ducted system. This has the virtue of replacing two not very good systems with a single one that would (I hope) both work better and be cheaper to run. The one-that-does-double-duty advantage is reflected in the higher purchase price. Electricity prices are likely to rise, shortening the payback period. Sustainability Victoria and Whirlpool have some useful data and discussions that I drew on in pondering these matters.

The cons? At present we have ceiling ducts for the cooling and floor vents for the heating. The reverse cycle would use the ceiling ducts, which of course wouldn’t work so well for heating. So we would have to supplement the heating with a panel radiator. We use this at present, however, so we would not be worse off. The ceiling ducts themselves would also probably need to be replaced. (Evaporative cooling ducts are much bigger than those used in refrigerative air conditioning, and I am assuming this also applies to reverse cycle.) However, having airtight ducting is apparently very important, and the old ones are probably anything but. Will the vent covers be too big? These and other pressing questions will have to be confirmed.

The appointment with the radiation oncologist, Pat Bowden, rolled around. I feel it was worth the wait. He confirmed that I was a suitable candidate for stereotactic radiation therapy. This is on account of having fewer than five metastases, and pretty good urinary continence. The main points covered:

• Stereotactic treatment is radiation therapy with a small, very focused target. A smaller dose of radiation is involved than previously, with few side effects (mostly fatigue).
• Bone metastases are easier to treat than those in lymph nodes, for the reason that the former don’t move around.
• The treatment goes for a fortnight, five days a week, for half an hour or so each day. Most of this time is setting up so that the beam is focused on the precise area. The radiation only takes about ten minutes. 
• I can drive myself in and home. The cost of car parking is refunded. Alternatively the hospital is on the no. 75 tram.
• The success or otherwise of the treatment is determined by the number of microscopic cancers present afterwards. These don’t show up on the MRSA PET scans because they are so small.
• 25% of patients need hormone therapy after this treatment.
• Patients fall into one of three categories, depending on what happens after treatment:
  • limited number of spots or no spots (“spots” being oncology-speak for metastases)
  • lots of new spots develop over time
  • a few spots develop, which are then treated by another cycle of radiation. Repeat as required.
    
• The next step is measurement, as part of which some tattoos are drawn on to assist in positioning the beam. I expect this will be happening later this week. 
• Following this, treatment begins. I have to have another PSA test the day beforehand. This gives them a baseline, so that the success or otherwise of the treatment can be determined.
• I can resume Pilates, and Pat is happy for me to continue with weights. (The type of spots I have makes the bones stronger rather than weakening them.)  Maintaining bone density is a good thing to do.
• Given favourable results, travel should be possible at the end of the treatment.

So I am guardedly optimistic of making some progress. I expect to hear from the measurement staff this week. Treatment should begin the week after. I am seeing Jeremy, the urologist, on 21st.

I guess the fact that I can have this treatment is due to the progress I have made in areas like the urinary continence, and recovery from the operation in general. I have been doing more, because I have felt up to doing more, and sitting around is no fun when you feel as if you could be active. I have done a lot of steps this week, fiddled around in the garden, done a lot of shopping and cooking, and will do some repairs to one of the external blinds tomorrow.

I have also been making some progress on improving the reception on the FM tuner. As a vintage piece of gear, this comes equipped with spade-type antenna terminals, to which a T shaped antenna is connected. (This is basically two pieces of ribbon wire attached to each other, a slightly more sophisticated version of the old rabbit’s ears antenna.) ABC FM reception is fine, but 3MBS has a bit of hiss, even with the multiplex filter on. I would like to connect instead to the TV antenna, in the hope that that pulls in more signal. After some research, I conclude that this requires a 75 to 300 ohm converter to get the antenna terminals to accept a coaxial cable. Bunnings has just the thing, so I shall head there tomorrow to acquire one of those and several metres of blind cord.

My beloved and I went yesterday to the funeral of my cousin’s partner, who had acute myeloid leukemia. This was obviously a tremendously sad occasion for my cousin, his partner’s family, and their extensive network of friends, several of whom spoke. (Although held in a church, it was not a religious service.) The love in which my cousin’s partner is held was obvious; she was someone who touched many people’s lives. On a personal level it was challenging for both of us. Of course I have thinking about my mortality since the diagnosis. I found it difficult not to think about my life being commemorated in this way, the river of life then resuming its remorseless flow without my few drops. Knowing something as an objective reality is relatively easy. Feeling the reality, knowing it emotionally, is a lot tougher, and something that only gradually reveals itself.

It was fascinating and reassuring to read the latest issue of a journal about prostate cancer aimed at those affected by this condition. The issue was devoted to the role played by anxiety, stress and depression in prostate cancer. Sounds like a fun read, I know! Actually, there was a lot in it that is relevant to me and my beloved. (The impact on her of my having cancer is something I do try to be mindful of. There is not much good news, so I try and make sure that we spend time together doing enjoyable things, plan for trips that we have always wanted to take, and just to show appreciation for what she does for me, and little kindnesses. Restraining my occasional irritability is something else that I work on constantly.)

I learned from this journal issue that the emotional toll of prostate cancer can be felt as much by the carer as by the patient. This applies to things like worrying about PSAs going up, and dealing with the uncertainty of which treatment to have at which stage of the illness. There was an interesting checklist of the symptoms of depression: sleeping more or less (as compared with regular sleeping habits), loss of interest in daily activities, an unusual increase or decrease in energy, changes in appetite (eating either more or less as compared with regular eating habits), increased irritability or impatience, or difficulty concentrating. I have had almost all of these. They are not new symptoms, and I have medications for depression and ADD, some of which I still take. I just hadn’t thought of them being associated with prostate cancer.

A part of the issue of even more relevance to me was an interview with a patient. He is secretary of the survivors’ group meeting that I attend, so I read his story with interest. After his PSA rising several times, he had his operation in 2005. His second PET scan, in his words, lit up like a Christmas tree, with three big red dots well away from the prostate. After receiving a prognosis of two to five years, he is still around exercising, playing golf, and enjoying time with his grandchildren. Like several PC survivors I have met, he is an advocate of weight bearing exercise. This strengthens the bones, compensating for the effects of hormone therapy, and has numerous mood benefits as well. I have resumed walking and going to the gym, and will be checking with the radiation oncologist whether there is anything he particularly does or doesn’t want me to do.

Last, I was pleased to see distraction mentioned as a valid coping mechanism. Mindfulness is known to be helpful in managing pain, depression and stress. But sometimes just doing something in which you can lose yourself for a little while can also be beneficial. (Like anything else, one can overdo this; I suppose if one goes overboard buying gadgets, that can put a strain on both one’s finances and relationship with partner!) As well as fiddling with gadgets and gardening, I find cooking a great distraction. We have our niece to stay once a week, and I really enjoy planning, shopping for, and cooking a meal that will be interesting and that will cater to my beloved’s various food intolerances. The emphasis in this issue on the various psychological and emotional facets of prostate cancer, and the ways in which they are being considered by medical professionals, was extremely interesting. It was reassuring also that the various things I have been thinking about and grappling with are real for other people as well.