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Minutes of Advanced Prostate Cancer phone-in meeting Friday 25 May 2013


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These minutes of the advanced prostate cancer phone-in meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice.


 


Prepared by Secretary Nev Black.


 


Acting Chairman opened the Telephone Meeting and welcomed everyone in attendance.


 


David Abrahams did a presentation on Palliative Care at the Your Death Your Choice Community Forum at the Southport Community Centre at the Gold Coast on Saturday morning 18 May 2013. There were over one hundred people in attendance. Guest speakers included Professor Ben White  of QUT School of Law, Jim Soorley the Former Lord Mayor of Brisbane, Senator Clare Moore an ALP Senator for Queensland, Professor Ian Maddocks a Palliative Care Physician and Senior Australian of the Year 2013, Wendy Francis a Queensland Director of Australian Christian Lobby, Senator Sue Boyce a LNP Senator for Queensland, Dr Philip Nitschke from Exit International and Noeline  Brown who was appointed Australia’s first Ambassador for Ageing in 2008 and still retains that position.  


   


David Abrahams   I called my presentation ‘I am Not Going to Die Within Three Months’. I did this because when I spoke to my GP he told me I didn’t need palliative care because I was not going to die within three months. The presentation was very well received and the government  officials that were there took it on the chin a little bit when I mentioned the downsizing of the Toowoomba Oncology and Palliative Care Units. Professor Ian Maddocks spoke to me afterwards, and told me it was an excellent presentation. I was a little shocked to get that little bit of praise. I have been asked if I would be willing to do some further presentations later this year and next year and I have assured the organisers I will be willing if I am fit and able. 


 


David suggested he could download the presentation to The Advanced Prostate Support website.  


 


Acting Chairman thanked David and the members of the Telephone Meeting agreed that it would be appreciated by all to have access to that information on the website. 


 


Person #23  is still on the Zytiga  (abiraterone) (ed: still not approved) trial and the last PSA was climbing and is now at 48. Is there anyone else on a Zytiga trial?


 


Person #8  said he was on Zytiga but it was not a trial in a formal sense. He was using it pre chemotherapy and had been on it for a few months. It produced an initial drop, however at the moment the PSA is rising rather sharply. The concurrent use of Nilutamide (anandron) maybe not helpful and he is about to chat to his oncologist about withdrawing the Niutamide.  


 


Person #23   If you are having it pre chemotherapy you are not on a trial.


 


Person #8   That is correct, but just mentioned it because there are not many of us on Zytiga.


 


Person #19   There have been trials with Zytiga pre chemotherapy in addition to the post Chemotherapy ones that  Person #23  is talking about however I believe recruitment has been completed.


 


Person #32   I would like to make the observation that in America and Europe Zytiga and Xtandi  (enzalutamide) are approved and in the U.S. XOFIGO  (Alpharadin, Radium-223)has been fast tracked and become available. 


Are there any trials for Alpharadin in Australia? On the PCFA website www.pcfa.org.au  there is a mention of an ALSYMPCA trial with contact website www.algeta.com or you can get your doctor to contact Dr Graeme Dickie at the Royal Brisbane Hospital, for those in Queensland. Does anyone have any information about that? 


 


Person #19   I am not aware on any Australian initiated trials. 


 


Person #32   I just thought for the likes of Person #23  where his Zytiga is not doing the same job anymore or Person #25  might be interested.   


 


Person #8  suggested Michael Demarco  in New Zealand.   


 


Acting Chairman introduces Person #3


 


Person #3: I retired in August last year just before my sixty ninth birthday, with no illness, and I thought I was as fit as a fiddle. In December one morning  I started to get a very severe pain very low down on the right side of my stomach, just above the groin. The next morning it was hard to get out of bed and with difficulty in straightening up. My wife took me to the local hospital and we were there for about eight hours. I started to worry later in the day when a second urine sample and further blood test were requested then a scan. The outcome was while the doctors  initially thought I had appendicitis they advised me it was not and that I had secondary cancers in the bladder, liver, ribs and spine. I was in a state of shock. 


 


 


As it was so close to Christmas I could not do very much except go home and see my GP. As the GP was on holidays my first appointment with him was the first week in January. Blood tests, X-rays and scans were arranged. A biopsy at the hospital was scheduled for mid February. The biopsy was considered elective surgery and was rescheduled for two weeks later due to other emergencies at the hospital that day. I went back to the doctor another blood test and a further scan from that. The result of that was the doctor organised a biopsy to be done immediately at the hospital. The biopsy confirmed the primary cancer was prostate cancer. I had two injections while in hospital, one each side of my navel, of Firmagon  (Degarelix). Powder and Solvent are mixed for a 120mg injection. I had a painful reaction to that and they gave me morphine. The next day I was a lot better and able to go home. 


 


My PSA in hospital was 160 and four weeks later when I saw my doctor, for the first of my monthly injections, the PSA was 2.5 and at the second of my monthly injection the PSA was 0.76 which was an amazing drop in the PSA reading.   


 


I have no pain or discomfort from the cancer, a bit lethargic and a few hot flushes  but otherwise you would not know there is anything wrong with me. I am looking forward to a long association with my GP and Oncologist. At this stage I have not asked about the prognosis is for longevity but I am so positive and hopeful about the future. Mum and Dad lived to their late nineties I might not last that long but you never know. The only real drawback I can see is my wife and I can no longer travel overseas because of the medical insurance but we plan to see a lot more of Australia and thank you all for listening.


 


Acting Chairman  wished Person #3  all the best for his future treatment and thanked him for telling his story.  


 


Person #1  asked why he could not travel overseas.     


         


Person #3   We have a daughter in Dubai and had intended going there later this year but I doubt I would get medical insurance as I have cancer in my right hip. It would be extremely expensive to get back home without insurance if anything went wrong so I doubt I would be able to get insurance at a reasonable price.  


 


Person #28  If you had a heart condition that is one thing but cancer that is under control should not be a major problem. Another man agreed with that. 


 


Person #3  said he would do some homework on that today and their daughter in Dubai may get a visit from them. 


 


[Jim Marshall (not at this meeting and not a lawyer and not a doctor) said ...


I have previously spoken about the complex rules governing travel insurance and prostate cancer. 


 


On a search today, the wording has been simplified in all the contracts I found: "If you have a Gleason Score P.S.A (Prostate Specific Antigen) of 3.0 or less." this is an "Approved Medical Condition", and you are covered by the standard travel insurance.


 


Clearly there is a mistake here, because Gleason score and PSA are not related. The reference to Gleason score may merely have been accidentally left in when the contract was made simpler. 


 


However, whether or not your PSA is under 3.0, you would be wise to ask the insurance company for a quote.


... end Jim]


 


Person #8  It is great that the Firmagon is working so well for you. They have chosen the right drug to give you quick relief. The one thing you will need to keep an eye on is the imaging of bone metastases. You radiation oncologist will be able to talk to you about whether you have a need for specific targeting of bone metastases with External Beam Radiation can be helpful if some spots become painful. There are some drugs that have been available more recently specifically for bone metastases. It could be worth being aware of them so you could talk to a medical oncologist at some point particularly about those that are approved and those that are potentially available for clinical trials as the literature suggest they are very effective.   


 


Person #3   I have spoken to my radiation oncologist and he mentioned what I would term spot welding. I was unaware there was a problem with my hip. While in hospital they asked when did I first start getting a pain in my hip. I had to say I did not realise I had a hip problem. They were talking about putting a pin in but as I had no pain or discomfort they decided to leave it alone. The oncologist is monitoring that but he has said as soon as you start to get any discomfort or pain let me know immediately.  I had a bone density test which was ok. Cancer is very much a learning curve and thank you to Jim Marshall for his assistance.  People have heard I have cancer and sometimes they are not sure how to speak to you so I like to put them at ease. 


 


Person #3   was asked the name and the spelling of the drug he is on. Firmagon  (Degarelix).


He then advised the group he is not on Firmagon  any longer he is now on Lucrin  (leuprorelin acetate).


 


Person #8  asked why it was changed from Firmagon to Lucrin.   


 


Person #3   no I don’t know. 


 


Person #8  You have had such a positive response from Degarelix it might be well worth asking the question. 


 


Person #3   the original injections were done by the doctors at the hospital and the oncologist was the one that changed it to Lucrin . The doctor said he was aware of Firmagon  and there was discomfort and pain. The pain was terrible with the Firmagon . 


 


Person #32  Dr Snuffy Myers has a video on Firmagon posted 27 February 2013. (ed: New Drugs Confusing Your Doctor by Dr Myers posted on 27 March 2013)


 


Acting Chairman as there is no further questions Person #3  we wish you well with your treatment and may you join as again in the future. Enjoy your overseas trip.


 


 At the Face-to-face meeting at Greenbank in February, a discussion there showed uncertainty was the topic that came up quite a bit, waiting for test results, waiting to be given a treatment date, waiting for side effects or other health problems to resolve and wondering about travel. 


 


Today we have Samantha Clutton with us. Samantha is a clinical psychologist and graduated from the Clinical Masters Programme at the University of Queensland. Samantha was the expert guest at our very first phone-in meeting in August 2011and is currently the manager of the Cancer Counselling Service at the Cancer Council Queensland. From all reports you and your team do a grand job there. In addition to her management role she continues to provide individual, family and group psychological interventions to clients. Welcome to our group today.


 


Samantha  it is amazing how the group has gone from strength to strength and while I am not surprised I think it is fantastic. One of the things we identified with three or four years ago there was not much support at all for men with advanced prostate cancer and this group helps to fill that gap. You all know about uncertainty of the future, while it is a fact of life for everyone, it becomes much more of an issue once you are diagnosed with prostate cancer. If you have signs of recurrence it is a part of life.


 


 It is very common for men and their partners, when they are faced with prostate cancer, to feel increased insecurity and uncertainty about the future. Questions about how is my life going to unfold, how should I be as a husband and a father, what is going to happen to my family, what is important to me? These are the big questions that start to occur to people to provide the background of vulnerability and insecurity which means then people are prone to experiencing some increased likely hood for anxiety. The situations that trigger off the anxiety, so that it becomes much more obvious, are reminders of things like cancer or loss, waiting for results of PSA tests, scans or results of those things, hearing of someone else’s diagnosis  or their disease progression, difficulties with intimacy as you might not be able to perform sexually the way before. They tend to be really common triggers for increased anxiety in the context of prostate cancer. It is normal for people to experience increased anxiety in those situations, whether or not you are aware of it, it is usually there.  Can people identify with that?   


 


Person #3   The one thing I could not get over, when the doctor arranged for me to go in for the biopsy which was two months after I was first diagnosed with secondary cancers, I was put on an elective surgery list. I was being wheeled down to the operating theatre when I was told there are two emergency babies to be delivered and I would have to be rescheduled. What I cannot understand is why is this elective? The next time I was the emergency.   


 


Samantha  I cannot comment on the elective surgery but I can comment on the increase in stress. Unfortunately those sorts of things are not that uncommon, there are often delays, it may be that people are away or people sick so that is definitely a trigger for an increased level or arousal. So we are talking about the fact you are dealing with cancer which is uncertain and that increases people’s arousal even if everything else is going really well. Other things like reminders, changed appointments or medical procedures that are not going to schedule or side effects or news stories that tends to get from basic attention to real anxiety or it can. But it is not in everyone. 


 


Anxiety is part of every ones journey to some extent but some people are more prone to thinking the worst. That can be genetic  and those people are more sensitive and look out for dangerous situations or it may be from past experience and that can be early past experience particularly around your own diagnosis can lead to increased anxiety. I thought it might be useful for me to talk a little bit about what happens when we are faced with challenges and particularly cancer related challenges so what happens in the body because I think it helps to understand is a very normal response. 


 


This does not mean we are not coping or that there is something wrong with you if you do notice tension or anxiety. Some of you are probably very well aware of this, that when we feel threatened by an upcoming PSA test or whatever it may be our brain sends a message to our nervous system there is a threat around the corner, that might be a tiger under the bed, that triggers the release of chemicals and in particular adrenalin which is designed to prepare our bodies for action like fighting or running away. 


 


That is fine when dealing with the tiger under the bed but not helpful to have that type of response when dealing with an upcoming test or something like that. The symptoms include increased heart rate, muscle tension, increased agitation, difficulty concentrating on the one thing for very long, and or difficulty getting to sleep or staying asleep. 


 


Can also be gut symptoms like the result in loss of appetite or nausea, palpitations to the heart and if you have a predisposition to a bad back, shoulder pain, headaches or neck pain they can be triggered by that increased arousal. Is that something that people can identify with, any of those symptoms in the more challenging situations?  


 


Person #19  I certainly experienced those things when I was initially diagnosed. I was a new chum on the block in all of this and it went beyond arousal, I did not lose control, but is was straight out fear when you were waiting for some of those test results. For various reasons I got over that and the last ten years I have been fine but in the early days it was a very, very, strong effect that I felt.


 


Samantha  For exactly those very reasons it was the threat of the unknown and dealing with that. What we tend to find people get a lot of that to start with and that tends to subside with time. You then get little peaks like when you are faced with new challenges. The same physiological arousal system that is kicking in but it tends to be less overwhelming but still noticeable or even if it is not noticeable it will still be there. Some people are more tuned into it than other people. One of the other things I look out for when I am speaking to someone, and we do speak to a lot of men after prostate cancer and a lot of the partners of men as well, you might be aware of your own situation or you might not be but partners often experience more distress at least early on than the men themselves. 


 


We notice that what happens when the brain becomes distressed you look for danger. Even if it is just an upcoming regular PSA test or a scan it is common for your brain, without you wanting it to, and certainly without you being aware of it, to engage in, what if thinking, and thinking of all the things that could happen. The danger is you do start to think about the worst and that can contribute to that stress response getting higher. We know, and research shows, that clearly when we are stressed we think about what could go wrong and what we know is we can significantly overestimate the likely hood of bad things happening and we underestimate our ability to cope. 


 


That is a little bit of background as to what happens when we facing challenging situations. It reminds us what happens to the bodies physiological system and that the reason we get some of these physical symptoms and anxiety or french fear but our thoughts then tend to kick in and prolong the stress by thinking about or imagining what could go wrong. Does anyone have any comments at this stage because I do have some strategies about what we can do about it?


Person #32  You touched on anxiety before tests, I have been on continuous hormone therapy for two years in April, and just before I got the results of the blood tests and I do not know if it was because it was a two year anniversary of the commencement of hormone therapy but my wife was more concerned about that particular blood test than she has ever been before. She did worry about it quite noticeably a lot more than normal for the couple of weeks prior to getting  the results. Because of her concern I thought about the results a lot more also. That subject was discussed at the face to face meeting at Greenbank.  


 


Samantha  When we first talk to people about uncertainty we get people to understand it is perfectly normal experience.  I think that is important if you notice, that in you, or you notice that in your partner, they are not, not, coping they are not going crazy, they are not somehow turning into someone you do not know or understand. It is a perfectly normal reaction and response and human beings are programmed to respond to threat with increased arousal but we do know it manifests in different people in different ways. So for your wife it was certainly the worry and the rumination for thinking about things and unable to get those thoughts out of her head.   


 


  Person #32   What you said is correct but I was hoping you might be able to say, eat more lettuce or something to fix the problem.   


 


  Samantha   First of all be aware it is normal and we tend to judge ourselves or our partners negatively . If you judge yourself negatively, I am not coping, what is wrong with me, get a handle - you tend to make the stress worse. You start to feel like you are letting yourself down, you have to be positive all the time, what is wrong with me, that just adds to it. There are lots of layers that can contribute to feeling really flat or down or prolong the anxiety. We know anxiety comes then it peaks then subsides by itself. So if you add to it with judgments about yourself, I am not coping, there is something wrong we find that actually makes it a lot worse. 


 


The first thing we do when we are talking to people about managing anxiety and uncertainty is first of all being aware of their own signs that they are anxious. Often times particularly women might be tuned into themselves and their anxious thoughts more. Men might often feel it in their body first so the signs of increased arousal, or what they are doing or their behaviour. Some of the things we notice in people, difficulty getting to sleep, some people have tension in their neck and shoulders, heartburn or more irritable with family or with their wives, withdrawing from things they normally like to do, staying home instead of doing things or having a few more drinks. Can anyone identify with that as signatures of stress in themselves or talk about what you notice in yourself as a sign of increased arousal like stress?  


 


Person #8   I found in my own case I tend to get pretty heavily into researching the disease and the science that is going on. Most of us, I find, are pretty optimistic actually. That is what I have found over the years coincidently or otherwise, I think I would have done it anyway. It is not something that causes me day to day stress and has not done so for a long time. 


 


Samantha   Do you notice when you feel a little bit more tension or stress you tend to do more research?


 


Person #8   I would not say I consciously use it as an antidote. Where fatalism fits in and where acceptance of death fits in our society is pretty bad about that, we do not understand it at all. Dying is not regarded as a natural thing it is regarded as an unwarranted interruption to life.  


 


 Samantha  That is a really, really interesting point you have raised. Have your wives or partners or family alerted you to the fact there are certain things you do more of or less of when you are under stress?


 


Person #19   I got over my fear, of fears, by coming to the conclusion that there are a lot of random chance elements in the whole equation and therefore while I could do everything I possibly could do to fight the disease it may well be beyond my control. I then settled down and got an immediate sort of benefit out of that. Most other people would probably not get a benefit out of that I would think, you would tend to be the opposite, but in my case I may be a bit perverse I think. I came to the realisation that I will do what I can and I settled down and I have been happy ever since, and that was ten years ago.


 


Samantha   Do other people identify with that?  


 


A number of men answered yes.


 


Person #15   I certainly identify with Person #19.  I was diagnosed about a year ago and the uncertainty is still with me. My wife and I have coped with the uncertainty by saying we do not really know how much time you have got. Whatever time we have we want to use it positively in a meaning full way and make the most of it. So far I have been able to, most days, take it quite positively. I have also found on a couple of occasions when I have started to feel sorry for myself I felt very miserable and I really do not want to go there anymore. 


 


Samantha   Generally though, feeling quite uncalm and making active decisions to engage in things that are meaning full and give you life purpose and value.


 


Person #15   Yes, so far I have been able to do that. When you asked do you identify with Person #19  approach, Yes, I have been able to do that so far except on those couple of occasions when I started to feel sorry for myself and that was not particularly helpful. 


 


Person #3   I find it very strange that the way I feel about my cancer now as it is something that I do not think about very often. I think early in the peace I could have thrown the towel in. If someone had said to me twelve months ago you would be diagnosed with primary and secondary cancer I am not sure what I would have thought. My life is going along as normal at the moment however I might feel a bit more advanced this afternoon when watching grandchildren playing basketball and rugby league. I am fortunate I do not have discomfort or pain whatsoever. Being an extrovert may help and I do not worry about it so much anymore.   


 


Samantha    I can tell you, you as a group are a highly evolved lot. The reason I say that is very common for people when faced with cancer and when faced with the uncertainty associated with that the initial anxiety and periods of anxiety you can then avoid the moments altogether. Part of avoiding the moment is acknowledging the cancer and all of the issues. As a group I would say you cope more adaptively than many if not most people and we know although there is no right or wrong way for coping, we know for sure that avoidance of all reminders can be a pretty disastrous way of coping.      


 


Person #23   When you are first told it is a hell of a shock. I remember when I went down to get the result of the biopsy and I said to my wife that I would be back in a few minutes because I expected nothing to come from this. When he said that you have got cancer, I don’t think I heard anything else for some time. It is a hell of a shock to you but that’s a long time ago now, seventeen years. I am just with the other guys I accept it and I don’t have any pain either. I have been through chemo. Sure there are side effects but you just cop it, that’s the way I am anyway. I live a pretty normal life.


 


Person #19   Samantha, you have proved that I am perverse because I enjoy coming to these teleconference meets. (laughter) So I must be perverse.


 


Person #1    Person #19 can you summarise what you said about getting over your issues of fear and how you faced and managed the stress and your anxiety you may have had?  


 


Person #19    My summary was I started thinking about the situation I was in and this was back in 2003, and few months after the diagnosis and after the operation. I realised that I had advanced cancer. I started thinking about it as I was driving to a medical appointment from work I came to this conclusion while I would do everything I could. Where you sort of land or where events play  out that we all have in our life and in my medical life as well there is the likely hood that there are things I couldn’t  do anything about  at some point of the process. For some reason as they say I don’t understand it and I didn’t understand it then and I still don’t understand it. 


 


The fact that I realise that there is a sort of landing chance that I did not have control over potentially in play it gave me a comfort, which is why I said I maybe perverse. I don’t know why it would normally you would expect that would knock you but I was the opposite. It gave me a benefit I could have had that realisation and while I have had minor anxiety waiting for test results to come in nothing like I was getting before. I really have had no fear based problems since.  Getting involved in what you are passionate about if you have got other activities you can do that you are really interested in. Be it playing with the grandchildren which I really enjoy or anything really that people sort of indulge in or get involved in that you really enjoy. That helps a lot as well that was the sort of effect that I got. I am not claiming that is a panacea for everybody. I don’t understand how it works for me so I can’t necessarily recommend it but it seems to work for me for some reason.


 


Samantha   I tell you how it works and I think you will probably find it really useful to know that it is something that profoundly helpful but it is not easy for everyone to do. In fact a lot of people find it impossible. What I might do is email you some of the strategies because they venture around exactly what you are talking about Person #19.  What we know is that stress and high levels of stress that  go on and on, we have these normal peaks of stress that come up when we face these immediate reminders and they can subside but a lot of people live with a quite high level of stress generally.  This does not tend to subside like some of you blokes are saying yours has subsided most of the time. Now what we know  is that because you are faced with the idea of probably not going to be cured there is a lot of really big feelings that go along with that, sadness and fear.


 


 A lot of those big fears are, all those negative feelings and people can’t bear those feelings and to stop themselves from feeling them they try to avoid them altogether. So you find that a lot of people in order to push those feelings away or push those thoughts away. Thoughts about death, not being there, leaving people behind all of those they push those thoughts away in order to push the feelings away because those feelings are so overwhelming. They do that in all sorts of ways maybe keeping busy trying not to think about things, drinking or smoking more, seeking reassurance all of the time that things are actually going to be okay. 


 


There are all sorts of ways of avoiding. Those avoidance strategies tend to work in the short term to bring your anxiety down as a distraction one thing works at numbing your feelings works in the short term but in the long term it can actually add to the problem. It is easy for me to say, but it is a really difficult concept that Tony used, but you summed it up perfectly. If you can make space for some of those difficult thoughts and feelings and try and acknowledge them and feel them even if it is just for a few moments without pushing them away.  So allow that intense sadness or fear or whatever it may be to be there without pushing it away sometimes, what you feel is, that it loses it power and you no longer have to struggle against it. Person #19 does that seem to capture what you think you have done?


 


Person #19    Yes and no. I came to that realisation almost ten (10) years ago and it is still operating now. It is not a short term thing. It has worked for me for ten (10) years and all the indications are they that it will continue to work for me.


 


Samantha    agrees that that is not a short term thing. So what I am saying it’s the struggle against that realisation though which works in the short term does not in the long term.


 


Person #19   I realise exactly what my position is and I have accepted that. So it is sort of an acceptance of the disease thing. A fatalism sort of element to it as well, various things like that. It doesn’t mean to say you can’t get a huge amount out of life in the meantime.  


 


Samantha   Your right - it is not fatalism because I think as fatalism as a resignation and a giving up. It is more of an acceptance I think which implies a more active and certainly has a more positive ring to it. Do people understand it is struggling against and pushing those thoughts and feelings away tends to be that struggle can actually make things a lot worse and means that you are always struggling and fighting against the anxiety and always trying to avoid those reminders. If you can somehow, like Person #19 has done, and touch on that thought about and touch on those feelings associated with wow, maybe I may not be in control ultimately maybe I have to accept that this is happening. Then deal with the feelings that go along with that which are quite profound feelings but if you can stick with them sometimes it can be really liberating.  


 


Person #8  It is a good distinction between the term fatalism and acceptance which is something I have not thought about enough. That is a good description.  


 


Samantha   Does that make sense to people?  I know it is a very complex fear.


 


Person #32   I had a radical prostatectomy in April four (4) years ago and my PSA started doubling every less than 90 days just after that. In February I had only a couple of test results so in the February 2010 Dr Charles Snuffy Myers was in Brisbane and I was lucky enough to get to see him and then in August 2010 I was lucky enough to go to the conference on the Gold Coast. I remember coming away from the Gold Coast conference and telling my wife I will live another 15 to 20 years.  At that stage I wasn’t even on the first line of hormone therapy but they talked about Zytiga, Xtandi and Xofigo  (Radium-223 chloride, Alpharadin) so I knew all those drugs were in the pipe line. In America all those drugs are a reality today so I have all those things in front of me that I can use. I haven’t even got onto to Cosudex yet.  I have an Eligard needle every three (3) months which has worked perfectly for the last two (2) years and hope it will continue to do so. I heard or saw somewhere and I thought how true it was, Positive people that take an active interest in their own health with the help and support of others live longer. I think that just everybody here today would fit into that category.                    


 


Samantha    So  Person #32 when you hear us talk about fatalism and sort of acceptance what does that say to you or how does that speak to you?


 


Person #32   I am quite confident that there is enough treatment out there to keep me going for years and years and years and I may die of something else. 


 


Samantha    I guess that is one of the things with advanced prostate cancer compared to other cancers it has advanced in there are many treatments that mean that it is more like a chronic disease. 


 


Getting back to that point about coping and managing uncertainty or anxiety, there are things you can do that you know that help you to manage your anxiety and you have to remember to do those things, particularly when you notice increased anxiety. Particularly around the times of tests and when you are waiting for something to happen. There not things you remember to do when you are stressed because all other automatic responses are kicking in and your normal rational brain tends not to be working as well. So they are things like physical exercise we know that takes away adrenalin out of the body and it actually gives your body some respite from the adrenalin the is causing the tension. Physical exercise is really good for you.


 


 Also things that personally nourish you they might be going for a long drive or it might be going fishing or listening to some music, going for a walk along the beach, doing something in the garden or the shed. They are things that can help to dampen down that stress response to give you some relief. You need to combine that with also an ability to recognise that you are anxious and to see if you can acknowledge that, make faith with that and stick with that for a little while. What you will find if you continually striving to not feel anxious, running away from it you never learn of ways to deal with it and you never sort of have those ah ha moments like some have described here today. Right, okay maybe I can deal with this.  


 


Obviously it is doing all of those things that you need to do to bring your arousal down but if you can also make faith for your feelings as well and acknowledge them and sit with them for a moment you often find they tend to have a lot less power over you if you can learn to tolerate discomfort and that uncertainty without needing certainty, without needing to pretend that everything is 100% perfect all the time.  


 


Person #1   You mentioned about women tuning into thoughts and men showing in their behaviour can you make some more comments about that with the difference there?  


 


Samantha    What we do know is that women are often much more aware of their negative thoughts and able to tap into them than men but not always. There is a lot of variation amongst men and women. So a lot of the time women will experience the anxiety and experience the thoughts that go with it. They are able to tap into this. What is going to happen? What is going to happen to me? Is this treatment going to work? What if it doesn’t work?  All of those thoughts then become can start the circle and they can tap into them. Often time’s women cope with those thoughts by talking about them by saying them out loud. They want to talk about them with their partner, what happens then, what happens if that can work if you have a partner that is happy to talk about them. If you don’t have a partner that doesn’t want to talk as a way of coping, to get on with things or just acknowledge a little bit at a time not necessarily all at once you can find that there can be a bit of a mismatch in the relationship and that can lead to disconnect from time to time.


 


Person #1   I think I am married to a man who I have to read his behaviour. I have to have some understanding of the medications and the side effects. I have noticed in my husband a change emotionally in the sense he is not the big strong leader of the family that was because of this journey. You have to somehow understand and know when to speak and when not to speak.


 


Samantha   That can be really tricky, and particularly if you find that talking it through helps you, to make sense of things and to help you find answers. So often times it can be really helpful if your husband isn’t in that place at that time there might be another time to talk them through with other women or with a counsellor or with someone else whose got a bit more distance from the situation.  So you can make sense of your thoughts and feelings so you can find answers. 


 


Women tend to need to talk about things and process them verbally, even if it is in their head, to come to terms with and make sense. Men are not as always tuned into what is going on in their heads but might tune into more of what is happening in their bodies. There tense, feeling like they need to withdraw or close down a little bit, they might also find their more irritable when they are driving on the road, less tolerant of things going wrong in the workplace or at home and that might be a sign of stress or they might find they are keeping busier and busier in the shed and not tolerating that down time quite as much. One way of experiencing anxiety or stress is not better or worse there are differences in often how that stress manifests. Any questions?


 


Person #23  How long has this been going on Person #1, how long has he had this attitude?


 


Person #1   After diagnosis at the end of 2010 particularly, and I also believe the Zoladex had an effect also . I am just wondering that is all. He is good now.


 


Person #23   In the early stages of diagnosis, I think particularly, and if you’ve got friends with cancer  which I did have. I had a nephew die within eight (8) weeks of diagnosis not of prostate cancer but of cancer. I had a couple friends in similar situations and that puts the fear of God into you and you think I am going to be in the same boat but once that wears off and you realise that there is treatment around and life can be reasonably normal. I wouldn’t worry too much.


 


Samantha   Your right it does things tend to settle down and people need to process these things at their own pace and in their own time. Be aware Person #1 that most of you would have experienced times in the relationship where it hasn’t been easy to connect after a prostate cancer diagnosis.  That can be for a variety of reasons both because of your own need to come to terms with it but also the changes in the way that partners relate to each other particularly if sex or sexual intercourse is taken out of the equation. Often it is because of the decrease in libido is a very common side effect of hormone treatment and a lot of men who are on hormone treatment after advanced prostate cancer so it takes a bit of readjustment in terms of coming together and showing love and affection.  Can people identify with that one?


Agreement from several teleconference members. 


 


Person #1   I have a smile on my face. 


 


Samantha   This is off my topic area but certainly you know that is something we talk to a lot of couples about. We first of all get them to sit down and to talk about that. You can sweep it under the carpet but like other things if you push them away they tend to give relief in the short term but they tend to rear their heads again. If there never dealt with they can cause a bit of a chasm in the relationship. It is really important to sit down and acknowledge that elephant in the room and say right this is how it is and this is how I feel about it. Then work out ways to come together and connect and feel close despite that.  


 


Person #23    I think it requires a lot of understanding on the women’s part really. Some women haven’t got that ability to understand. I’ve known cases of divorce which develop from it. It all boils down to that, how much do I love this person, enough to stay with their partners or not. If they get beyond that and except the situation for what it is everything is fine and it works out okay.  


 


Person #8   Directed to  Person #1 thank you very much for being here because I think it is a unique way of finding out exactly how our partners are feeling. I haven’t been expressed those sorts of perceptions on an all male group like this, thank you. 


Thanks from Person #23   also.  


 


Samantha   I would like to say as a whole group you are doing better than an average group of men following a diagnosis like this because of the fact that you have been prepared to grasp it with both hands and acknowledge it and you are talking it through and even hearing other people talk I think helps you to close your own feelings. We know the research shows that this can be really helpful in adjustment. There are going to be times for all of you where you do notice periods of being down, depressed or anxious that lasts longer than a few days or a couple of weeks. I would like to know that you know where to go for help in Queensland we have the Cancer Council and everybody can access that number 13 11 20. Telephone and face to face. We find with anxiety and depression that goes with prostate cancer can often respond really well to even short term support from a professional. Just know that is an option for you as well.  


 


Person #15   I would like to thank you for giving us practical advice on acknowledging anxiety and possible factors and therefore coming to terms with it and also talking it over as a couple in regard to love compared with a continuing intercourse. So both of those are very practical pieces of advice and thank you for that. 


 


Samantha    I am happy to distribute information that I have that may give you more tangible strategies to take away to the group so maybe I can talk about that later or we can liaise.   


 


Acting chairman  If you liaise with Jim Marshall he will be able to get the information onto the website for you.  


 


Person #8  I did touch on something that I suspect may be a topic for another day it interfaces with the presentation the David Abraham’s did on approaching palliative care. That whole issue of how to deal with the ultimate point where treatment has failed and it is starting to get for some people who are in the situation where concept of acceptance is highly critical and how to approach that emotionally and also practically. In terms of what palliative cares all about and how to understand it and accept that and also the practical things around advanced care directives and the medical power of attorney. Things people should do a lot younger than what we are.  Maybe that is a topic for another day and show some light on it.    


 


Samantha  There certainly is an interface.  I am happy to gently ease my way out so you can continue speaking and perhaps I can join the group at another time if I am invited.


 


Acting chairman  Thanks guest speaker Samantha for spending so much quality time with us this morning. We are very fortunate to have you come and talk with us and help understand the issues here today and deal with them at this telephone meeting. We will look forward to meeting with you at another time in the future.  


 


Acting chairman  Anybody have a quick update on themselves that they would like to share?


 


The next face to face meeting it will be Saturday 13July 2013 at Greenbank at 10.30am.  


Meeting closed at 11am. 


 


The next Telephone Meeting will be held on the 28 June 2013


 


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


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I think that the subject heading  should be Minutes of Meeting Friday 24 May 2013

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Thanks Paul.

I said I was back, not that I was all here!

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