Admin Posted July 15, 2015 Share Posted July 15, 2015 Thanks to Nev for these Minutes Advanced Prostate Group Phone-in Meeting 24 April 2015. These Minutes of the Telephone Meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice. Guest Speaker: Dr David Wong Chairman Bruce: Good morning all and welcome. Jim Marshall: Today we are going to hear about forms of scanning that can identify very small amounts of prostate cancer. The PSMA Gallium 68 Test and by coincidence member Person #3 is going to have that test this afternoon. Person #3 will tell us a bit about his story now and then we will hear from the doctor about the test. Hopefully he can tell us the results when we come to the next meeting. Person #3: Good morning everybody. My PSA in March was 14. My radiation oncologist suggested that I have a PSMA (Prostate Specific Membrane Antigen) pet scan which might identify where the cancer is but also whether in fact it might not be being affected by the Zoladex. Following the implant in March he put me on Cosudex and a week ago today I had my PSMA test. I am seeing the specialist this afternoon to get the results of that test. I had surgery in 2000. I started radiation when my PSA went up to four in 2004. My PSA was monitored between then and 2009 when I started on Zoladex. I have been on and off Zoladex for those six years. On this particular course I received my Zoladex in December 2014 and then I had the next implant in March of this year. My PSA went from 14 in March down to 3.7 in April and my Testosterone has stayed fairly low. I went from 0.5 in March to 0.3 in April. So quite obvious the Cosudex is working well with the Zoladex for which I am grateful. Chairman Bruce: Thank you. We await developments with test results. Person #3: Yes I will get the results and at our next teleconference I will give everybody those results of my PSMA test. Person #5: Do you have to pay for your PSMA scan? Two members at our local support group had to each pay seven hundred dollars. Person #3: It was billed on Medicare. I see Dr Doe at the Nepean Cancer Care Centre and he also works at Westmead. I had the test done in the Nepean Public Hospital and I have not had to pay anything. I will find out from Dr Doe this afternoon how it is paid for and I will let everybody know at the next teleconference. Person #4: I had to pay $1,000.00 and I was told it was not covered. Jim Marshall: As far as I know I haven’t heard that medicare's paying for any of these scans. I guess that is a question for Dr Wong: in a few minutes. Chairman Bruce: The possibility is, if it was done in a hospital, it might have been covered by hospital costs as opposed to a private service in a hospital. That is conjecture we will find the answer in due course. Person #5: On that same topic I spoke to the Royal Women’s and Children's Hospital in Brisbane where you can get it done and I was advised there was no cost because it is a public hospital and bulked billed. Whereas at the Wesley you have to pay for it. However with respect to if the cancer has spread to the bones and your oncologist/radiation oncologist know that then it is highly unlikely they will allow you to have a PET scan or a Gallium 68 PSMA PET scan because they know that it has spread to the bones and they don’t want to muddy the waters with other types of scans if you have been having a nuclear bone scan for a period of time like in my case. Person #3: A week ago last Wednesday I had a full bone scan and with the same thing it was done at the nuclear medicine department of the public hospital. Jim Marshall: Update from the Senate Inquiry. I spoke at the Inquiry from about three o’clock to about four o’clock in the afternoon. They had sessions through the day. At one of those sessions the pharmacist people who had put in submissions had to explain to the Inquiry why there are two classes of pain for drugs in public hospitals and private hospitals. I didn’t really understand their answer. I gather it is, private hospitals can do some procedures that public hospitals can’t, but in general the costs are the same. Rather than speak for anytime now this morning, on the website the original posting about me being called before the Senate has been supplemented with more information (as replies). The original posting gave the submissions to the group. The submission we put to the Senate Inquiry in was contributions from a number of members, particularly a large amount of work from Paul Hobson and Alan Barlee. Those two members also supported me in getting ready for the Senate Inquiry. At the Senate Inquiry you are given a suggested five minutes for an introductory opening statement. I chose not to say very much in the opening statement except give them a list of the questions that I would like to be asked. It turns out that was a very wise move. There turned out to be six other people in the group, some of them spoke longer than the suggested five minutes of their opening statements and some of them in reply to questions. One particular professor took a long time with his answers. So because I had asked those questions deliberately in my short introduction they were placed on as questions on notice and we were able to get that information entered. The opening statement and the answers to questions on notice are both posted on the website that you can see. My strategy was to speak off the cuff rather than reading from a prepared statement and my measure of how successful of what I was saying was whether important members of the committee were taking notes or not. If I saw they weren’t paying attention then I tossed in something like ‘men in Australia live 3.3 years longer than men in the USA’. As soon as you see someone taking a note then you know someone is listening to you. I felt that we got a very good hearing overall when you take into account the questions without notice. I think by concentrating on just a few points we had more chance of action being taken on what we are interested in. Are there any questions? Person #3: I think it was very wise to do what you did. Obviously you have had some experience at giving information. Jim Marshall: I have indeed but never as high as the Senate of Australia’s Parliament. It made me a little nervous. Yes I have had to get my point across in other parts of my life earlier in my life. Person #5: Jim did you feel Senators were interested and keen to understand what the problems are and being involved in the Senate inquiry or were they well or it is just a job and we will just give it a tick and flick? Jim Marshall: There were genuine interest particularly from the chair of the inquiry Senator Rachel Siewert and from one of the participating members Senator Nick Xenophon. They were particularly keen to be given some exact recommendations on what should be done. You can imagine they are sitting there all day and people are very intent in telling their story in front of them so their eyes did glaze over. Once people finished talking and they could ask questions and they would be asking that almost exactly - what specifically would you like to change?. For instance the professor - he kept saying instead of cost benefit we should look at value and the question I had in my mind and they had in their mind is how do you measure that. So they then asked him what specific recommendations do you have. They were after specifics. Because they are there all day listening to, let's face it, much the same stuff their eyes would get glazed over. Not long after I started speaking all members seemed to be occupied with other things so that is where my strategy of making sure they stayed awake while I was talking came in. The answer is yes genuine interest and genuine in looking for something exact. They didn’t get a lot of exactness from a lot of people. I did go and see the companies in the morning and it was a bit daunting in the cafe beforehand. I was sitting there by myself and Roche, I think it was, had a team of six or seven people, all briefing up their front man. Afterwards there was about 16 of these people from the three companies having a debriefing and I felt a little bit lonely there by myself. Anyone who was prepared to give them clear guidelines as to a specific change that they could make because they are law makers they need specifics to write down was heard. Person #6: Anyone who missed Jim you can go to the Senate website and watch the actual replay. It is all on video there. That will give you an idea of how it all went. (Ed: it may take ten seconds for the clip to begin) https://youtu.be/NS-zCoLB4G8 Jim Marshall: Thanks for that reminder. The last thing I did this morning was add a link to the video. Our session was four hours long. I didn’t put links to other times that I spoke because I haven’t seen through it myself. I did post that but there is something wrong with our website. I will have to refer that to our web management committee and their technical group to sort out. People who want to check up you can website now and that post should be the top one on the right hand side of the forums. Go to jimjimjimjim.com and click on the blue ribbon and it is on the right hand side of the forums page. Chairman Bruce: Welcomes Dr David Wong to telephone meeting. Dr Wong: As some of you may know in the middle of last year at the Wesley we started doing scans using PSMA or prostate-specific membrane antigen. We were the first centre in Australia to do it and basically when we first started it was to try to identify disease in men with prostate cancer that who had previous treatment either prostatectomy or androgen therapy but then the PSA is rising. In the past it was good to identify the recurrence with bone scan, CT scan or nuclear fusion MRI. For the last nine months we find we have been getting pretty good results certainly looking at things but people are believing us, the way the radiation oncologists and the urologist and even the medical oncology they are believing the results that they are being given. Lately what we are picking up on what we believe are the small non-malignant, but true malignant cells and some of the bone metastases or cancers not identified with the bone scan. In the last nine months even in Brisbane and in parts of Melbourne and Sydney there has been a change in the so called oligometastatic disease prostate cancer where treatment is changing we don’t know where the treatment is leading to but at least there is a way of identifying early invasion. The second group is a bit more difficult it is the stage mainly prostate cancer before surgery that is why we do those scans before the surgery to see whether we can identify the possible metastases. If you know where the disease is you may not want to have surgery that is a bit more difficult time to come to grips with but basically the result today is better where we are looking at. In a nutshell that is where it is now. Any there any questions? That is just the jist of what we do. Person #6: Could you explain why the PSMA is better at detecting cancer than say glucose or sodium fluoride? Dr Wong: The fact your normal prostate will produce PSMA but in very low concentrations so in theory if I was to do PSMA in a normal patient with no prostate cancer there would be minimal of PSMA in the prostate. Men with prostate cancer, the prostate cancer always increases the production of PSMA and therefore we are able to quickly detect the disease. To your second question, in the past the only other tracer we had access to is FDG or Fludeoxyglucose. This is a glucose tracer so the theory is that malignant cells would pick up more glutens it is more hypermetabolic but we found that we have used it in the past for patients with prostate cancer but we find that it is a higher grade tumour that it picks up the glucose not the so called majority of the prostate cancers that we see. Person #5: What size of tumour does the PSMA pick up in comparison to a normal nuclear bone scan? Dr Wong: Even when we started we were confident in taking nodes in terms of nodal disease. We were confident at 5 mm and as time goes by 1 to 2 mm now. The question now is that when you reach 1 to 2 mm nodes how can you be sure, and we are not sure, but the more we do the more we speak it is always there and it is hard to prove it because it is really difficult to sample a very small node. In terms of bone metastases the smallest ever found is 2.4 mm and it was in a patient from Melbourne. It was in a very small sclerotic focus and it was just caught with PSMA. I rang up the radiation oncologist in Melbourne and said what are you thinking I was just reading it because of the work we had done so far you look at it and it is there and there is a small sclerotic lesion so the smallest one that I have caught is 2.5 mm on a bone lesion or bone metastasis. So we are dealing with very small lesions now. Person #5: Does the PSMA pickup metastasis if it has spread through the brain? Dr Wong: That is one case I haven’t got, but yes. When it starts to spread to the brain what the first thing I would ask is it your normal run of the mill Adenocarcinoma. If it starts to spread to your brain as I would advise you before it is a Adenocarcinoma or a Small Cell Carcinoma or one of the unusual ones. Once it starts to go to the brain I would be looking at the histology of the prostate cancer itself. I have had cases where it has gone to the brain but nobody has gone back to look at the histology the initial histology for the prostate cancer. Person #6: What sort of PSA level are you getting results and how extensive is it? Dr Wong: That is a question I ask myself and I think I’ve got an answer. We are trying to look at our own figures. In my hands if it is more than two I think I should really see something, more than two you should see that on the PSMA unless it is one of these funny prostate cancers - neuroendocrine variant. If it is a normal carcinoma more than two you should see something and one to two I think I should see something. The problem when there is less than one or when people starting asking to look upon two in our hands it has been around 50%, sometimes we see it sometimes we don’t. Say someone is uniform two I would closely less confidence we should be starting to do PSMA at uniform two. Knowing that the results still around 50% or less when we do upon two. Once it starts to double I think that is more critical and when it starts to double we should be looking at it more seriously. I just want to say that if you have some time and want to drop by I am here most of the time and see the place you are quite welcome. Have a look at things and have a yarn with the staff and see what goes on and see what we do here. We do PSMA nearly everyday now. Person #5: If has been diagnosed with bone metastases and had a high PSA in the hundreds and then subsequently treated with Zoladex and Cosudex for six years and in that subsequent six years the highest the PSA has been seven but after having chemo the PSA starts to rise. Would there be any benefit in having a PSMA PET scan? Dr Wong: Yes. In my opinion if the PSA starts to rise there would be disease there somewhere and if you can’t track a disease you can not treat. If it is rising there is something going wrong that we need to find. If the PSA is rising yes definitely the PSMA that would be the first choice I believe now days. Chairman Bruce: As a well-retired medico the situation that covers this is that prostate cancer doesn’t remain the same disease all along. So if something is behaving itself, shall we say and growing slowly, but some part has gone not into a more accelerating mode by a poorer Gleason score kind of thing that may be the thing that is worth chasing to quieten down. I would agree that a PSMA study will help with that, is that a correct assumption? Dr Wong: Yes at the Wesley we are quite strong at MRI as you may have found on the Multiparametric MRI. That is very useful in identifying the more aggressive ones and the ones that won’t kill you. That is what we have been doing. We are now trying to look at the role of PSMA within the prostate itself. We do not know. We do know there is some difference most of the time the MRI and PSMA in the prostate cancer most of the time it is the same. That is it attracts the same disease but sometimes it is different and we do not know why so I am trying to look at the occasions where why is it there different and we do not know why. To answer your question is we are always trying to do is to identify the more aggressive type of prostate cancer that will kill you. It has always been our aim to do that. Person #5: Who can make the referral to you for a PSMA? Does it have to be a medical or radiation oncologist? Can a GP do it? Dr Wong: A GP can. In our practice we say any of the medical persons so it just make sense together any medical person can ask to request it. We will do it from a medical person that is our baseline minimum. It doesn’t have to be from a radiation oncologist or urologist just any medical person. Person #7 Thanks for your invitation to drop by. I had a large locally advanced aggressive disease 6 out of 6 on the right side, Gleason 5 plus 4. My disease is well under control at the moment but with those figures it is likely to come back sooner rather than later. My oncologist asks for an annual bone scan. Would the PSMA be as good as, or better than the ordinary bone scan? Dr Wong: I think of the question in another way. In the first three weeks of doing the PSMA I went to our general manager, do not look surprised if our bone cancer for prostate cancer is going to fall because the general manager tracks all the work we do. In the last nine months our urologists are aware of how they behave unless it is advanced disease they can stop asking for bone scans. The problem is you have got to pay for the PSMA and I can understand that because there is no Medicare rebate. You can get a Medicare rebate from a bone scan. In our hands we have felt that PSMA has already replaced bone scans as a scan of choice for detecting prostate cancer. Person #7 Thanks very much for that very clear answer. The next question is what is the cost? Dr Wong: We charge about $700.00 per PSMA. We do a CT for attenuation correction. We can bulk bill that, the CT scan. I tell people look you are out of pocket $700.00 because there is no Medicare. It will take a long time to get Medicare. Person #7: Medicare will cover the CT portion of it? Dr Wong: Yes the CT is on a form and on Medicare. We tell people when they ring up, you are out of pocket with the PSMA. Person #5: What is the waiting list time to get a PSMA scan done? Dr Wong: Less than a week. In our practice we have a policy of for all oncologists things not just PSMA, PET any oncology imaging we try our best in less than a week. To answer your question, less than one week. If it is more than one week let me know and I will see what I can do. Person #11: What time of the day do you do PSMA? Dr Wong: We have got only one PET scanner so we do it mainly early in the morning and late in the afternoon or evening because we have to do the SCG patients and we have to buy the SCG from a local supplier so when it comes we have to do those scans. We produce the PSMA in house. Early morning, late afternoon and weekends if we have to. Chairman Bruce: Isotope studies one would require an injection then an interval and then the scan, am I right there? Dr Wong: Exactly right. We inject people, then half an hour or 45 minutes for the tracers to be taken up, and then we scan. Person #13: Are you aware of any PSMA facilities in New South Wales? Dr Wong: Yes, in New South Wales I think Royal North Shore Hospital is one and Bankstown Hospital. I think they have a waiting list of six weeks together. Person #3: They also have one at Nepean Public Hospital. I had one last Friday it is up and running. Person #12: When you do the PET scan and get the results and it shows a little bit of cancer in your spine somewhere or in your bones. Do you then go to a radiologist and they treat that with radiation? Dr Wong: It depends on your urologist. I would be very careful because my feeling is you should have a urologist you can trust, number one, and they will direct you where to go. At the moment my understanding is if there is one bone metastasis if it is confirmed they will treat it with radiation that is my understanding. Again I think you should be guided by the urologist that you can trust. That is always my belief you might have one person directing the traffic. Yes I think they will treat it with radiation if there is one bone metastasis. Person #14: Just following on from that previous question. If there are several small bone metastases identified would you give the patient any advice about what treatment they should pursue? Dr Wong: That is a difficult one. Make sure you speak to your urologist number one that you trust. Number two if it is multiple bone met I would assume it is difficult to treat with radiotherapy. If you have got a number of them it is hard to treat. If you have got one it is easy to treat. You would have to look at systemic therapy whether it is chemo or hormone. That is hitting out of my area now. Again I would say you have to trust your urologist to guide you. That is the number one person you have got to see. Then they will refer you onto the relevant specialists. Person #13: You have been doing this for nine months now and how important is experience in being able to interpret the scans? Dr Wong: It is really important. I was relying a lot on my urologist. We have a meeting every Tuesday morning and then we can text and phone each other and email each other, it is just critical. Like with all things that you do the more you do the more feedback you get the better you are. The less you do the less likely you will get it correct. It is critical you need to have experience and you need to have the core team behind you like urologist, medical oncologist and radiation oncologist we need to discuss it with experienced people around you to get it right or get it less wrong. Person #2: Are you finding with your PSMA test that you are picking up on unusual and unexpected things? Dr Wong: In a sense what we are picking up on now is expected initially. The more we do, we recognise that they are the same disease appear in the same places. It is no longer unusual for us. Even if it is unusual again I would question the original histology and if unusual do a biopsy of lesions. The more we do we find that some tumours are picking up on the PSMA not only prostate cancer other tumours so if you see something abnormal or funny if safe we will go with the biopsy just to see where we are. Person #7: Just a comment on the question before about experience. Doctor Leslie Thompson who pioneered the multi parametric MRI in Australia, was speaking to us in Brisbane, and he said that he had patients referred to him from newer practices and they had identified disease where he couldn't find it. In the opposite, they had missed disease, when patients had come to him for a second opinion, he was finding out for that type of scanning particularly experience is very important. Dr Wong: When you see a surgeon and they have done hundreds of these or thousands you feel a bit more confident than someone who has only done one. When I get it wrong I feel bad. The more you do you recognise and it becomes second nature to you. It is very important in whatever you do to have that experience behind you. Chairman Bruce: Sounds like you are a doctor who thinks what else can it be before it is narrowed down to, I think it is this, and that is a very valuable type of doctor. Person #17: Is it ever too early to have a PSMA test or should we wait until there is some further signs than just jump in and have one? Dr Wong: I would always be guided by your urologist that you can trust that is the number one. Whatever you are going to do, be guided by your urologist because that is the person taking care of you. Person #17: I am guided by my medical oncologist. My history goes back 15 years and it was due to androgen deprivation then it stopped so I changed medication and the new androgen deprivation regime seems to be bringing it back under control. So I wonder while it is still reacting to androgen deprivation is that too early to have a PSMA or should I do it now? Dr Wong: You can do that as a baseline. At this point in time this is what I am like and then you can go back and whatever changes happen after that you can go back to your baseline. There is a reason for having one as a baseline in my opinion because you know where you are heading. You can always go back to a point in time. This is what it looked like before and now this is what it is like. I like a baseline. Chairman Bruce: As Dr Wong: said earlier and this doesn’t apply to members of our group because we are behind the eight ball as they say but if somebody is diagnosed with prostate cancer they should probably have the scan at that stage to see whether any little metastases outs that person having aggressive local treatment be it surgery or radiotherapy. There is no point in trying to shut the gate when the horse has bolted. Person #5: My medical oncologist feesl that having the PSMA scan would not add any value to the treatment because I am quite widespread bone metastases and it would perhaps muddy the waters by bringing in perhaps, colour things and the outcome is not going to change. What is your opinion on that? Dr Wong: In the terms of functional imaging you want something that will tell you all wholly and quicker whether the treatment is working or not. If you can find that something that will tell you that. Are you being monitored with bone scan or other? Person #5: I get a bone scan done every three months or six months depending on the treatment I am having. Dr Wong: If you have something that will tell you earlier whether your treatment is working or not it may change what is being done. Ultimately it may not change the outcome. Let's say the PSMA can tell you that yes the treatment is all working if they want to continue with it or else the PSMA says look it is not working it is progressing and therefore maybe there is something new or nothing new doing nothing is an option too. It is just a different philosophy in life where people are being put on treatments and we don’t know whether they work or not. If you have something that can tell you yes or no with more confidence in a shorter time frame perhaps of some more use to determine what you want to do with your life. Person #6: The take up of the trace takes about 45 minutes. Getting it out of your system it goes through it urinated out and so on. Does that mean that you can get some cooling of urine and pick up the trace through the urethra? Dr Wong: Thats exactly right. In reading a study that is the most difficult part the PSMA in the urethra and the bladder that is our biggest problem. When you come in we try and make people drink some water to try and dilute it but that doesn’t happen all the time. We have to live with the PSMA in the kidney, urethra and bladder therefore we need to do CT treatment to tell if there is a node there. When we report the study we try not to overcall disease. Let's say you have got PSMA in part of your urethra and you're not sure there is a node we look at the CT. Very quickly you look at a CT if there is a node there and does it look abnormal and if we are really struggling we do an MRI. The better we are at looking at small nodes with CT less in the beginning all of our patients have had MRI before because of less problems for men and the urologist. As we get a bit better we rely less on MRI now. Person #14: Could you please make a comment on the relative effectiveness of hip bone using sodium fluoride as opposed to PET CT using Gallium as a detection of bone mets? Dr Wong: I have been doing PET bone scans for the last 23 years now and since we have started PSMA I have stopped doing it for the sodium PET bone scan. We have replaced our normal bone scan and our sodium bone scan. In our practice the urologists have stopped asking for the bone scans. We don’t touch the bone scans. Specialists who see a high PSA like 100 or 200 still ask for the bone scan but the ones where the PSA is a bit lower they have stopped doing bone scans, normal bone scans and fluoride bone scans. We have stopped doing the PET bone scans for prostate cancer. The PET bone scan is very sensitive for arthritis. So that is another minus for the PET bone scan. Person #11: From what you have just said the PSMA is more accurate, so we should be putting pressure on to have the PSMA listed on Medicare. Dr Wong: We are still going through the motions to get the MRI listed so I think it will take a long time to get PSMA listed. Person #16: You are talking about PSMA scanning. I am currently on a clinical trial at the moment for Enzalutamide (Xtandi) and potentially Abiraterone as well but my medical oncologist has indicated that if at the end of all of that they do a PSMA and there are multiple nodes rather than a single one in my right pelvic lymph node they would consider doing more drug treatment rather than surgery or radiation. Have you got any comments about that at all? Dr Wong: I am used to the treatments at the Wesley because we have meetings together. My understanding is if it is localised and one node I would assume, if they can get to it safely, through surgery or radiotherapy. If it is multiple nodes then it may be really hard to be treating everything. Person #16: If you had one large node and a few tiny spots would it is sensible to try and knock out the large node by whatever means is safe to do so and drug treatment on the smaller bits? Dr Wong: I am very careful here because I am not the treating person I would assume you could get rid of the bulk disease and hopefully you can mop up the smaller disease with your other treatment. It sounds reasonable but again we need trials to confirm that. Person #16: Thanks for that. Chairman Bruce: We are very grateful to you Dr Wong: for coming and we have had a lot of questions answered. Jim Marshall: Dr Wong: has given us a very comprehensive guide to how it works, what it is better than, how much it costs, where you get it and what sort of treatments your urologist, medical oncologist or radiation oncologist might be thinking about with the results. I would very much like to thank Dr Wong: for giving up his time. I look forward to meeting you sometime and taking up your offer to see around the facility. Dr Wong: If your urologist, radiation oncologist or medical oncologist raises a question, just give a ring I will probably be able to answer questions. I can tell your treating specialist what our experience has been so far and I can also defer the question to other experts. You are quite welcome to visit us. Thanks a lot for asking me here today. These Minutes of the Telephone Meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice. Link to comment Share on other sites More sharing options...
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