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Pain Management: Men with advanced prostate cancer talk to a palliative care doctor: Minutes 24 October 2014


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Advanced Prostate Cancer Support Group

Phone-in meeting

Minutes 24 October 2014


These Minutes of are general in nature and not meant as advice. You must consult with health professionals for advice.


Minutes courtesy of Len Weis. 


Chairman Bruce: Welcomes all members and Dr John Gillett to the Telephone Meeting and asks David Abrahams to introduce our guest speaker.


David Abrahams:  Welcome Dr Gillett. John’s background is in rural country Queensland general practice for many years before moving on to palliative care for South West Queensland, Central Queensland and the Darling Downs. He moved across to private practice based out of St Andrew’s Hospital. He is extremely knowledgeable and very approachable. Thank you.


Dr John Gillett:  Good on you David, I could not have asked for any better.


Chairman Bruce  Palliative care is a very important subject and to me it’s been taken by the Palliative Care Association to mean a term for terminal care. I’m going to pose a question that, as hormone suppression of androgen causes so many symptoms, whether that is now part of the palliative care physician’s problems for management of symptoms.


Hormone suppression therapy produces all sorts of funny symptoms and some guys do not appreciate some of them; the signs like osteomalacia and osteoporosis at least and depression they don’t sort of tie in with it, nor do they understand the metabolic changes that there are, certainly when they get mood swings and hot flushes and things like that they do not like.


Dr John Gillett  One of my mates has had prostate cancer and he is a very good runner and he just said that being on hormone therapy took away his mojo and he didn’t feel that well. I said you’ve been a good runner so why don’t you keep running?  He said I just don’t have the drive anymore.


Jim Marshall  Dr John, would you give us a bit of a talk about pain management please.


Dr John Gillett  Usually when we are talking about pain management a lot of times what we are talking about I suppose is you can have early pain if you are having radiotherapy if you are having curative treatment. I guess the pain that comes to my mind is if you’ve got bone or secondaries or metastases. If I see someone in my line who has got specific bone pain, if it becomes very symptomatic the initial treatment for any pain is to work through the pain relief and if the pain is not too bad I’m happy to start with paracetamol, if you particularly take it regularly. 


You have to be careful with paracetamol because it is a toxic drug in overdose even though it is one of the common drugs used today. It is not a great way to die with liver failure. Certainly, to control pain, paracetamol has a role, and another thing about paracetamol is that it is only mildly constipating.  

The problem with the opioids is, Morphine, Fentanyl, Codeine, Tramadol is that all these drugs, they really bind you up. There is one new drug around called Targin which has a component which counteracts the constipating effect and that has gone a long way to helping with constipation.


It’s not perfect but it’s a step in the right direction. The other thing I encourage people to do is to follow a bulky diet. I love people who eat rolled oat porridge because it is a good thing for your gut and usually does make you regular with bowel motions. I don’t care what poison people like and take even if it is Epsom Salts, Movicol, Docusate as long as they keep their bowels regular.

You always have to ask what your bowels were like before you got sick, because if you are someone who only moves their bowls once every three days well that is all we are going to get out of you when you are sick, because you can’t make a silk purse out of a sow’s ear. 


Moving on from there we go on to the Opioids. In the midrange of pain people talk about drugs like Tramadol but I think they fit into opioids. Once you start to move you really are into the Morphines and other drugs, things like Panadeine Forte, anything with Codeine in it, you have to remember that Codeine is just a precursor of Morphine.  

People think that Codeine is a milder drug. Codeine would be one of the worst constipating drugs that I have run into and I’m not particularly fussed with Codeine or any of the Codeine drugs.  


Ten percent of people do not have the enzyme that converts Codeine to Morphine so it does not work for 10 percent of people who take it. I think if you are going to use Morphine then I usually move on to morphine based drugs. Morphine itself can be given in a long acting form or a short acting form. Opioids such as hydromorphone and Fentanyl can be used as a patch and the nice thing about that is you just put a patch on your arm and you get the dose without having to take oral medication. Fentanyl is probably one of the less constipating drugs.

Everybody is different. I use the oral route unless there is a problem. I hate to hark back on constipation, but if you get constipated everything is worse. Your nausea is worse, your concentration is worse, and your pain is worse. About a third of the world is constipated all the time and on the back of that I tend to believe that politicians are over represented in that group. 

When it comes to bowel habits with my patients there are a few things that I say: it is better out than in and particularly if you are having a lot of trouble with constipation. There are usually social hang-ups, like I will be embarrassed if I fill up my pants and all that sort of stuff.  I just say don’t worry about that, you’re much better off and if you don’t have the occasional accident then you are not trying hard enough. 

When the patient is in hospital and I am trying to clean them out and we have a bit of a mess there I encourage the nurses to break open the Champagne and say what a great effort and you are going to feel much better for that.  I try to get away from all those negative things like you have to move your bowels in a certain way, at a certain time and in a certain place.  


Now getting back to bone pain and prostate cancer, this is one of the wider fields where radiotherapy really comes into its own. I can remember in the old days in the bush when we encountered critical prostate secondaries and bone pain you could not get anything for weeks. I used to say this is an emergency. One of the unfortunate things about palliative care is that when they hear that word palliative everyone thinks that you don’t have need, and you go on the back of the line. You have to remember that most of these conditions are just as much an emergency as the bloke with the broken leg and many of those sorts of things.  


What I see now, particularly in Toowoomba, is that we have a very good radiotherapy centre here and people have switched on to it and we have been able to bring someone down by angel flight or something like that.  They might stay one night and not always in hospital; they might stay in a motel or up the Olive McMahon Lodge here. 

Ed: [The Cancer Council of Queensland, Olive McMahon Lodge, provides a home away from home for regional cancer patients who travel to Toowoomba for cancer treatment.]   

They get a large fraction of radiotherapy and then get sent home. Some people get instant relief from it, like acupuncture. Some people, a small proportion, get relief from it straight away but it is up to six weeks that you may have to wait. It is very effective in seventy percent and the beauty of it is that you are getting the pain relief without having to take increased quantities of Opioids with the side effects that they cause. So that is certainly important. 


Chemotherapy has a role to play, it reduces the amount of bone pain. One old chap I knew had a fair bit of skeletal metastases without much of it spread and he used a radiation drug called (inaudible) which actually targets the genes themselves that turn over more quickly. They take up the (inaudible) thinking it is calcium and of course the radiotherapy then effectively knocks out the cancer cells. That can give very good response to someone who has widespread malignancy or widespread skeletal metastases. 


Chairman Bruce  May I interrupt for a moment. I take it that is the radium 223.


Dr John Gillett  So, you’ve always got to remember all those things have a bit of a role to play. If someone comes in and says I’ve got this bit of a pain in the femur, and usually say they think they're leg is going to break, I don’t have to be pushed that hard to do an X-ray. It’s pretty important to get a shot of that bone because if the cortex of the bone is more than half eroded then we know that you are at a high potential for having cracks in that bone. 

It is a lot easier to put stability into the bone before it fractures rather than after it fractures. It’s like a piece of wood, once it breaks you have splinters and all that sort of thing. If you can support it with another piece of wood then you are way ahead. If you can put a nail down the centre of the long bone to prevent a fracture, that is pretty important.

That is it pretty much it. I’ve just sort of brought open a whole lot of things there with pain.

There are a whole lot of other things that help with pain. Sometimes people have got trouble sleeping when they have got pain then we go back to the old things which I grew up with, antidepressants, as they have a role in central mediating the pain and reducing the pain. There are a whole lot of drugs that you can consider.If someone says they are having trouble sleeping and it’s the pain, you might go for one of the old type and give him a sleeping tablet and also a pain tablet. Has anyone got any questions about pain relief?


Person #17:  How many times have you used enemas to relieve people who have been affected by occasions of constipation?


Dr John Gillett  Certainly enemas are there, depending on the history. I don’t like anyone to go more than three days without alarm bells ringing for me. If you clog up badly it’s like cement, you’ve got to get it out. I’ll give enemas on the third day if I’m worried about you. The other drug that is useful is an injection called Methylnaltrexone or Relistor and it reverses the opioid effect of the constipation of the bowel without reversing the effect of the pain relief. You just have to make sure you don’t have a bowel obstruction and that there is nothing else to worry about.


Person #17:  These footballers that go for the coffee, does that have any advantage for pain relief?  Is there any evidence of that having any benefit at all?  It’s got a lot of publicity down here in Melbourne with a  football club. One of the things they were doing was adding coffee to his enemas. He was mainly doing it to obtain pain relief I guess. Is there any evidence of that having any advantage?


Dr John Gillett   The one thing that springs to my mind when you say that is the essence in it. Where it started from, there was a German physician, during the second world war and they were running out of drugs, and he started treating people with coffee enemas and he found that that gave reasonable pain relief.


Person #17:   I think the mind-body connection is mighty powerful too, and I guess it comes down to the degree of pain you are suffering.


Dr John Gillett  Yes. I mean caffeine is a good pain reliever. But it is so left field to medical thinking that no one is prepared to see a trial on that.  And also who wants to go and spend a million bucks investigating coffee.


Person #17:  There’s another question. I wonder what all these people did before all these coffee shops opened. I wonder what side effects that will often have on the number of people that source that much of it.


Dr John Gillett  Talking about running and that, some runners often take a double shot of coffee just before they do a run, so they peak their performance. I think some of it is social, it came from a European idea. Aussie blokes used to go to the pub and drink alcohol to socialise and a lot of Europeans used to go down to the coffee shop and have a coffee and that’s how they socialise. I think that we realise talking to other males and not be inebriated actually has benefits in it. We just have to watch how much of it we drink, but I think the odd coffee is quite safe.


Person #9:  Can you comment a bit about the non-medical options for pain and what evidence there may be, even if it is only anecdotal, particularly techniques like acupuncture and therapy. 


Dr John Gillett  I trained in acupuncture in China back in the eighties.  The first thing when someone comes with pain, just because someone’s got cancer, you can’t put everything down to cancer. So if someone comes with pain, particularly arthritic knee pain, not necessarily malignant knee pain, I find acupuncture is very good, even to the extent that short acting pains like spinal pain and that.  Sometimes, I’ve also trained as an osteopath, it’s safer to manipulate someone with cancer because you’ve got a recent MRI to say that that part of the body is safe versus somebody that comes in off the street with a chiropractor.  

How is he to know that this is not an undisclosed or undiagnosed prostate cancer with a metastasis in the back? 

People get pain from other than cancer, the same sort of age related thing that much of the community gets. Acupuncture is reasonable and I can remember a lady I had with lung cancer and bone secondaries from that and she came in with pain just on the outside of her hip and no matter how much morphine she was on she still had the pain. So I said to her one day about acupuncture. Well she got such amazing results that she said to me I wish I had come to you last year. So needles did better than any morphine. With some sorts of pain it is still worthwhile looking at things like acupuncture.  

I don’t know enough about hypnotherapy, but I think that it may have a role. Certainly things like meditation are worthwhile. Things like distraction are also important. I try to work on the level of pain. If your pain is a four out of ten it’s at a level where you can still have social interaction and concentrate on other things versus the pain taking over your life. Some people want to have zero pain out of ten and that’s Ok, but I’m going to give you a four out of ten so you can lie there and do nothing else with your life if you like that. Anyone over forty has pain, I always say I have this pain in my back every day. So you have to take in context the pain that you’ve got, so we look at that four out of ten and maybe we need to be teaching the mind to live with that lower level of pain and maybe hypnotherapy has a role there.


Person #17:   The mind-body connection and all the user connection with those people, especially the people that are so advanced with so many cancers. Not everyone of course, as we understand the pain, tends to think that it so very severe. But it is amazing just how many other people that had so much relief and had a much better life and a little bit longer than they would have had if they had continued on the journeys they were on.


Dr John Gillett  That’s a good point. When I think about complementary therapies, I often think that they take longer to get people to take ownership of their condition and their own pain. I often try to get a lot of doctors to implement acupuncture because you are really giving the patient some ownership and some say in the whole thing and all that has to be a positive therapy.


Person #17:  That is interesting because I had a meeting with Professor Tony Costello just recently and I thought I was going to use him but he used me. They have used the support group they have got started there, I can’t remember the name of the psychiatrist he introduced, but he’s got the Ok now, so Melbourne Hospital is now commencing meditation with people coming through urology. So it is becoming more acceptable as you will witness and I have seen.  

The mind connection and the relief and the release in those people is so powerfully strong, but not everybody as we know, depending upon how advance they are. But with the mind body they can take some control of that area and the relief you see in those people is just amazing.


Dr John Gillett  I’ll support that theory strongly. How I got into acupuncture, two old dears used to travel from my little town 200 miles to see an acupuncturist. I thought, wow, there must be something in it if these two old dears risk their lives every week to go and do it and that’s what got me started into it. And of course it became very important because all we had were things like the non-steroidal drugs which we know had severe side effects, and it was just a brilliant thing to be able to learn and to give people their own ownership.  

I should just tell you about the non-steroidal drugs, even though I hate them and I saw problems, you always have to have an open mind.  Sometimes with bone pain in the occasional person the non-steroids are like magic and they work very well and so I learnt to never say never.  Sometimes things that you don’t accept are worth a trial and they work brilliantly. Not too often I find that, but in cases they work I’m grateful to have them on board.


Person #17:  It’s amazing how we all react very differently. You have success with Fred, and then Jack comes in and you do the same thing but he seems to have the same symptoms but he does not get the same feeling.


Dr John Gillett  Yes, that’s very true. You have to take everyone as an individual.


Person #17:  It’s a bit like on the farm. You have a mob of stock out there but you just don’t walk round the perimeter of them. You have to walk through and check them out.


Person #3:  Lymphedema, doctor, I have prostate cancer and I’ve had a series of radiation treatments including treatment on my leg.  (Inaudible).  I had back pain and I saw a number of specialists and I was almost immobile and this went on for months and my wife got on to Doctor Google and she found that my instance was Lymphedema. She found a number of Lymphedema Massage Professionals and within a few weeks from that time I had a normal leg. The pain had gone. The lump on my ankle had started to leak.  

Then I phoned my sister, she had breast cancer in England and she had radiation therapy. Any radiation problems in England you are automatically put on a Lymphedema watch and given Lymphedema Massages.  

I’d had months of this and all I needed was two weeks and a couple of professional lymphedema massages and two wonderful women trained my wife and myself to do it at home. So I might spend a couple of hours a day doing it.


Dr John Gillett  I think you might have touched on a bit of the problem there, that is, just a couple of hours a day in the modern society, you just have to spend time. The massage you talk about does take time but I agree with you that it is very beneficial. 


Person #3:   It was amazing to me. I developed what I call a palmer flap above my penis, because of the damage done, full of fluid and I’d wake up about midnight and I’d just lie there massaging it and it had an effect. I started to own the problem instead of waiting for someone to come and see me.


Dr John Gillette  I think that is good information for the other guys. It’s not that prominent an effect of Lymphedema but it does happen. 


Person #11:   There has been a lot of talk in the media lately about the use of cannabis products. I was wondering whether it’s got a role in palliative care, particularly for bone pain in prostate cancer?


Dr John Gillett  I run into a lot of people who ask me that and I only have one word for them; that is they have to tell me how they go with it. What I know is that it might have a good role in nausea but the jury is out about whether it has a role in pain relief. If you are going to smoke this stuff, it seems that it is only for people that have been smokers or smoked pot or done some sort of smoking. Others have got to learn how to smoke in order to get it into their system. 

I know an old lady of eighty and she has been a smoker and is going Ok, she feels it has been some sort of help with her nausea. The family say if we get caught by the cops going to buy this stuff will you support me. So that’s what I know at the present time.  But I know it is in the press now and it seems to be useful in pain. I can’t say yea or nay at this point, I have not had enough experience but I have got patients who use it.


Person #17:   There used to be a chap west of Mackay and I know quite a few ladies were doing it from that area and they found that they did not have any success with it so I guess what works for one does not work for others.


Dr John Gillett  What you are talking about is individualising a medicine and in complementary therapies, like I also studied homeopathy, you individualise the remedy to the person, so even if it is pretty straight forward there might be three different remedies you might use depending on the makeup, personality and all that sensitivity of the patient. 

Western medicine used to say what a load of bunkum. 

But now we are finding that we are tailoring chemotherapy to the patient, to the genetics of the patient. Now of course in the old days with complementary medicine they did not have the DNA structure, all they could look at was the phenotypes and external structure and try to work that out whereas now they are looking at the genotype with DNA.  

People think this is a new thing but this is something that existed in medicine for a long time, particularly if you consider complementary medicine a part of it, then people have been trying to do that for a long time.


Jim Marshall  During the last five years I have had cause to sometimes visit with men who are in their end stages with pain, or even earlier on, and their doctors have prescribed pain medication. But for various reasons they don’t want to take it. They are worried about becoming zombies, they are worried about their mind, they are worried about not being real men and so on. Can you help us with anything on that?


Dr John Gillett  Often families end up saying, ‘Dad’s not telling me the truth’. If the person wants to live with a six out of ten pain, then let them. Maybe they are the sort of person who when they cut their hand on barbed wire just kept fencing and got fixed up the next day. There are people like that. I tell them there is nothing to worry about.

I’m not worried about addiction, if you want to ask me, sure, I’ll make you into an addict of the stuff, but you are not taking it for the side effects, you are taking it because you’ve got severe pain. 

I say if you want to put up with pain that’s your business. I want to give you the medication at the rate to help you. We talk about being a zombie, I tell them in the early stages you are not exposed to much in the way of drugs, even if you take a 5 mg of Morphine it’s going to knock you out a little bit. But you quickly adapt to that and you just get the pain relief without the side effects. I think everybody has to make the choice particularly if they are in the position to make the choice. If they are demented or something like that, then the family or next of kin will have to make that choice. 


Person #17:   How long before this chemo brain leaves you?  Does it ever leave?


Dr John Gillette  It will leave. It’s better than radiotherapy on the brain. I guess I would be encouraging you to use Vitamin B. I’m a bit worried about not too much alcohol because that sort of corrupts the brain a little bit if you are on the edge.


Person #9:   As you mentioned previously, if you are concerned about addiction and one might also add to that adapting so that the side effects of the drug might be that you get more convictions to them on both counts. Can you comment on that and particularly how we might do something about patient education in that regard?


Dr John Gillett  Yes, things have become quite complex in this field in recent years. When I was in general practice people with no malignant pain rarely took Opioids. You always had a few people who say they took Paradex, and so now you’re getting within the non-malignant population, there is a huge amount of people who take Opioids and they are basically addicted and we think for no particular benefit to them. 

People say, ‘might be addicted to this drug?’ and I’m honest, I say yes, you will be addicted to it but the benefits far outweigh the side effects or the long term negatives. 

I say to them, look, I don’t tell people how long they are going to live or whether they should live or die, that’s in a higher power than me, I say my job is to see that you live as best you can and enjoy every day just like everybody else is. So, if people have got severe pain, I think you should never take more medication than is needed to make that pain as minimal as possible. I’ve seen people on a dose of morphine that would stop an elephant and still be able to think cognitively. Every assessment I make I’m in a position where you can interact with the family, and where there is positive stuff in the day, then I’m convinced that you are on the right level.


Person #9:  Just to complete that last question I asked about patient education, is there such a thing as a sort of hierarchy of or a choice or decision tree or something along those lines which correlates the severity of pain to the most appropriate medical intervention, or perhaps the non-medical for that matter, just so the patients know exactly just where they are in that continuum.


Dr John Gillette  Once again it’s all fairly woolly because sometimes I see people that have got prostate cancer and they’ve in severe pain and it’s in their  back and it is London to brick that when you investigate, you find that they have always had back pain and this is osteoarthritic back pain and it has nothing to do with the cancer. So you have to be careful as you get older about the other causes of acute pain.


When you talk about a hierarchy there are a whole lot of things like relief systems that come into it. If you grew up in a family where as soon as you got a pain you got a pill you are going to be a lot more inclined to feel a pain and say I need something for it versus the other bloke who says I’ve got a pain and eight times out of ten that pain goes away or I just have a Panadol and a cup of coffee and the pain goes away.   

Someone else can look at that and say it’s going to go on and become a severe pain so I am going to take something straight away. Or the other guy might say if I get a pain and eight times out of ten it is going to be a bad pain, then I will take something straight away. So it depends on how we look at pain as well. The question for me is does the pain interfere with your life. If it is significantly interfering with your life then go and make an effort to reduce that pain.


Chairman Bruce:  John, I’ve always felt that if a patient has pain that is bad enough and you attribute it to their cancer, they can be assured that they are going to be given Morphine for pain relief and not just for kicks. They will need a bigger dose later on for sure.


Dr John Gillett  That is a really good point. Often it is, wow, I’ve given Mrs Blogs 50mgs of morphine to help her to sleep but she is awake and talking and she says my pain is a lot better. You find the body sucks up the amount that it wants. If you have a lot of pain it will suck it up.


Chairman Bruce  On behalf of the group, John thanks very much for your time, consideration and information and for putting up with us. 


Dr John Gillett  Thanks for having me along. It is great what you blokes are doing.The teleconference is going to be helpful in the bush because trying to get bush doctors together is difficult because they all live in different places and it’s the same with guys with prostate cancer all living in different places. I think it is a great thing that you are doing. 


Jim Marshall  Thank you very much doctor.  Thanks again.


Chairman Bruce  We are now back to, shall we say, ourselves. Has anybody got breaking news? 


Person #10:  I’ve just had my first session of chemo on Wednesday. No major side effects at this stage and temperature is under control so nine sessions and counting.


Chairman Bruce:  Well keep your hair on Person #10.


Person #9:  Are you on taxotere?


Person #10:  Yes, that is correct. All went well thanks.


Jim Marshall  A couple of announcements in case some people have not read the email yet. People in capital cities will be able to use mobile phones to dial in from now on. 

People who are outside capital cities who get free national calls will also be able to dial in with mobile phones. We are also working with PCFA to see if they can shift their teleconference perhaps to a 1800 number because 1800 numbers will eventually become free to mobile phones in Australia, so that should give a coverage to everybody. 


Person #9: That is fantastic news Jim


Jim Marshall  The second thing is the world expert on supplementary and complementary medicines is Dr Mark Moyad. On the Website  www.jimjimjimjim.com there is a menu that says books, and we never got many books in there, but one of his books is there. He has a new book coming out for people to read on their tablets and computers on supplements in about five day’s time. 

He will be coming to us on 19 December. So, wherever you are, if you can get hold of some sort of phone and dial in that will probably be quite useful. He will be teleconferencing from America. I can dial several people on my phone. I also have   Person #2    from Cairns and if you were at our meetings where    Chuck Maack    was in from the United States I just did it the same way. I call them from my phone and join all the calls together. 


Chairman Bruce  Anything else?


Person #10:  With respect to closing comments on palliative care, John Gillett alluded to politicians being constipated. There is still not proper recognition in Australia, among the community at large, and that includes medical professionals and politicians, of the real value of palliative care. Because when I signed on for palliative care, my GP said you don’t need to see them yet because you are not going to be dead within the next few months.  

It is still perceived that palliative care is for end of live, not for quality of life. I’m a layman member of the Palliative Care Council of Queensland and we are here in Queensland, and I am not sure it is the same across Australia and all small NGOs, but we are working on an education programme that will be passed to the Council of GPs, or whatever they call it, for themselves. So perhaps when that is done we might see some improvement and recognition of the true value of palliative care.


Chairman Bruce  You can get the World Health Care’s definition of palliative care which is the treatment symptoms in any chronic disease. And that is from the beginning of the problem, say from when an incurable cancer has been diagnosed, palliative care starts even if it is only to go and get some help from a Psychologist because of the severity of the diagnosis.  

If you get the cold vapours when you are first told that you have cancer that is one thing, but when you get told that this is the beginning of the end sort of thing, that is a kick in the guts and that needs support quite apart from aches and pains and anything else that is covered down the track.


Person #9:  There is a whole branch of practice called psycho oncology which is all about exactly what you are talking about.


Chairman Bruce  Getting back to the parliament, that could come under the definition of talk fest because there is a diarrhoea of words and a constipation of ideas.


Person #14:  Maybe some of the members can help me. I have just had a flexible cystoscopy and I have a terrible frequency problem which means I have to go and have a pee about twenty-five times a day and I dribble a little bit. The urologist said I would have to do a segment TURP which I had twenty-one years ago, but he is going to do it with a laser which was not available when I had it done last time, and my worry is will that affect the cancer in any way in the prostate? 


Chairman Bruce  The laser, as far as I know, will only treat the appropriate number of millimetres per go, it does not gouge out, shall we say, ten centimetres away from where the light hits it. Various lasers penetrate various depths, some of them are superficial and I think the TUR laser just cores out gently as it goes until the urologist has removed sufficient material. I can’t see that it is going to do your cancer any harm.  When I had my TURP done a number of years ago, that was not done with a laser it was done the other way and that’s how I found out that I had recurrent cancer. That is not a problem I think, as far as I know, about bothering the cancer and stirring it up.


Person #14:   So it won’t make it any worse, you don’t think?


Chairman Bruce  I don’t think so, no. It’s hoped it would improve your urinary problem.


Person #14:   I have to have it done. I can’t do anything about it, because I am almost stopping.


Chairman Bruce  When I had mine, the frequency, I found out I had to do self-catheterisation because my bladder had got used to having 400 mls of urine in before it started to threaten the reminder that I needed to empty, and that only emptied the overflow.


Person #9:  A question on that. Have you had TRUS biopsy on your prostate?  What did that tell you about the location of the cancer? 


Person #14:   Well originally when I had the biopsy it was nine. They did about twelve and they were all active.


Person #9:   Most time cancers tend to be at the peripheral zone or at the top or bottom rather than in the centre most times, that’s not all the time with everybody, but you may get some indication from the particular cores that were cancer containing. That might alleviate any worries you got if you found the cores near the centre were clear. 


Chairman Bruce   Basically it will not aggravate your cancer in that situation. 


Person #14:  That had been worrying me so I am pleased to hear that.  Thanks a lot.


Chairman Bruce  I can’t give that to you as gospel because I am not a urologist and I’m not registered. I’m working on basic principles that I remember from ages ago. Is there anybody else with a desire to chat about something?


Person #9:  Just one question for Jim Marshall. Has there been any progress made with the manufacture of enzalutamide with regard to another approach to the PBAC about PBS registration?


Jim Marshall  No. We have a line to them now, to the manufacturer, through the CEO of PCFA Dr Anthony Lowe. 


Person #9:  Good, that is encouraging.


Chairman Bruce  There was mention this morning about cancer patient getting help when they need it, like advice for starters. In my time at the Radium Institute we could admit somebody today if we wanted them to come into hospital, but if we got a phone call and the doctor said he had a patient that had been diagnosed with cancer and could we see them, we considered that was an emergency quite apart from certain cancers are emergencies. 

To a patient like that a diagnosis like that is a problem and we insisted that we would see them as soon as possible.  


Person #9:  If you are online   Person #19,  have you had any further 

results or indications from your targeted radiotherapy that you had done with Peter Mac?


Person #19:  I apologise for the trouble I have had with the mute button.

No I haven’t had anything more, I had a twelve month follow-up with Peter Mac and had bone and had bone and CT scans which did not show anything. While it showed the treatment to be successful it did not show any other cancer activity, but the PSA is going up from very low levels very slightly so I’m concerned that there is something about somewhere that we can’t see at the moment.  TerryC  from Ballarat has a PSMA test shortly sometime this month.


Person #9:  It will be interesting to see how the PSMA test works and how well it picks up cancers in (inaudible).


Person #19:   Well according to this chap on the internet it does work pretty well. The protein it targets sits on the outside of the prostate cell and on the Scan it lights up as a result and so it apparently picks soft tissue quite well.


Person #15:  I understand there is a PSMA machine in Queensland.


Chairman Bruce  Nobody seems to have any knowledge of same for sure? I have not heard.


Person #19:  There is definitely one in Queensland and I think it might be a private one at the Mater.


Person #15:   It would be interesting to hear if anyone has access to any information about it. I’m surprised that no one on the forum has heard about it.


Person #19:  On the forum website someone from Queensland has posted about the one in Queensland, so someone in the group in Queensland knows about it.


Person #20:  I had spoken to Person #21  and I was reluctant to make a comment because I wasn’t sure how many people know about his treatment. Yes, he has had the PSMA.


Jim Marshall  He’s so keen on it he referred me to a person who might help and they referred it to their boss and the boss is happy to have a talk to us or write something about it. So we’ll have him do both.


Person #9:  I’ve got a related question someone might be able to answer, and that is about some C-11 Choline PET scan that certainly seem to have good medical press in the USA.  Do you know of any C-11 Choline PET scan happening in Australia?


Person #6:  No, anybody else?


Person #19:  Isn’t that only available at one site in the US or one or two sites in the US? 

The people at the Peter Mac Cancer Centre in Melbourne seem to think that this PSMA test, that a number of other people have got, is fairly state of the art. I don’t think anyone in Australia is chasing the C-11 Choline, but the PSMA test seems to be leading technology.


Person #9:   Certainly for people with soft tissue metastases it is an important issue although the normal PET scan will pick it up now but it does not pick up small cancers quite as well. 


Person #7  His doctor offered him the scan or treatments and he said he wanted to start treatment immediately and then he said he would have the scan and the doctor said no, I was offering you one or the other, you need some growing cancer for this scan to be able to find it; another trap for beginners.


Chairman Bruce  I just looked up Wikipedia for carbon eleven and I quote, “It is commonly used in the radioisotope for the radioactive labelling of molecules in Positron Emission Topography etc, etc.  It has a half life of twenty point three-three-four minutes.”  So you would need to be able to produce it pretty close to where you are going to use it. Enough said.


Person #11:  Just to comment on that. One of the members of our local support group, a man with advanced cancer, went up to the Wesley to have one of these PET scans, he said a Gallium PET, and the reason he was told that it would be beneficial to him was because he knew he had bone metastasis but not sure of soft tissue invasion so his oncologist told him that the scan would clarify that.


Person #15:  Apparently, just reading on the net, the Australian Cancer Research Centre in Queensland has got a grant for the evaluation of Prostate Specific Membrane Antigen based PET and MRI for the detection of multiple cancer in localised prostate cancer patients and the reason is to validate that PET imaging with 68GA PSMA can present lesions suspicious of prostate cancer with excellent contrast and high detection rates even when the level of PSA is low.


Person #15:  How low is low? 


Person #6:  I don’t know.  But Person #21 will know.


Person #10:  I believe below seven. They would not have taken that if it had been five. It would have to be about seven and showing signs of increasing over the past couple of months.


Person #19: Member #37 who is about to get this scan with Peter MacCallum Cancer Centre was apparently told that it would need a PSA of two or over.


Person #9:   That’s a pretty common threshold for most trials that relate to either imaging or medical treatment. Two plus three serial increases or successive increases in PSA.That’s pretty widespread.


Person #6:  It’s common for a number of different scans that they have a baseline below which they don’t recommend the scan. The one that Dr ‘Snuffy’ Myers was recommending to his patients a while ago, that was done at the Sand Lake Centre in Florida, the PSA level there was four. So I think it is a level you have to have before the scan is likely to work.


Person #9:  The usual critical question seems to be what will I do with the result, will it cause me to make any different decision and if the answer is no to that then no one wants to spend the money and probably nor should they.


Person #10:  I think that is a good comment because it does tell us why medical oncologists are loathe to recommend that type of scan on top of a normal bone scan or a CT or MRI because it starts to cloud the judgement of the patient.


Person #9:  We can benefit from being able to distinguish clearly between nodal cancer and bone cancer because sometime the treatments that you use can be quite specific to the news.  Dr ‘Snuffy’ Myers has certainly got a pretty clear differentiation in his recommended treatments between bone and nodal cancer. If you can make that distinction clear, once you have made it you probably don’t need too many more apart from perhaps tracking the CTs to see the shrinkage of the affected nodes or bone mets as the case may be.


Person #6:  Just on the question of changing your treatment, this is on the choline PET scan, they did the study of doctors who had used it and they found that it changed the treatment that the men were getting roughly half the time and about eighteen percent of the time it made a major difference to their treatments. We have to wait for a proper study in years to come to see whether or not the men actually live longer, but it did show that an accurate scan will change therapy in about half cases and change it strongly in about a fifth of the cases.


These Minutes of the Teleconference are general in nature and not meant as advice. You must consult with health professionals for advice.

Meeting closed at 11am EST.

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