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Advanced Prostate Cancer Teleconference 22 June 2012

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Advanced Prostate Cancer Teleconference 2012.06.22

Man #1 thanked Convenor Jim Marshall on the excellent way he organises and runs this group and arranges speakers. He mentioned a study done for PCFA of the needs of advanced men. They were less interested in support groups and hearing the good news of the localised men. This is therefore an important forum on which may be developed other groups around the country.

Man #2 explained that after a gap of 18 months his PSA jumped from 1.8 to 7. Cancer was found in 9 of 12 cores with Gleason 4+5 and perineural invasion. His scans were clear. He obtained a second opinion and was told that because of a weak flow he was not a candidate for HDR brachytherapy. March 2011 he started on Zoladex implants and was fitted with a suprapubic urinary catheter with a leg bag as radiation was likely to block his urethra. Zoladex initially brought his PSA down but after a short time it started climbing quite rapidly. Radiation was brought forward and starting with the insertion of gold seeds he had 2 months of radiation treatment in Toowoomba. Hormone therapy was changed to leuprorelin (Eligard®) plus tablets. His PSA has gone down to 0.04 after 3 months. His cancer had invaded the bladder neck and the right seminal vesical. Man #1 mentioned that perineural invasion means that the cancer cells now are outside a sheath and can spread along this path.

Man #3 said that for his future treatment, two good research papers have shown that radiation plus 2 or 3 years of continuous hormone therapy lead to better survival. However there are likely many reasons his doctor may have for cutting down the androgen deprivation therapy (ADT) before this. Also, complete ADT – which is an LHRH analogue such as Zoladex® plus an antiandrogen such as bicalutamide (Cosudex®) – can also produce better results than an LHRH analogue alone, but at a cost to health and cash. This will be something to discuss with your doctor.

Man #4 said that he has been on intermittent ADT for 5 years and his doctor believes in a break when the PSA gets quite low. Man #3 said that it was once thought that with giving ADT a break the cancer would not learn to adapt to a low testosterone environment. This was later shown not to be the case. Intermittent can result in a better quality of life and less bone loss, less risk of diabetes, less heart damage etc. Man #1 said that his urologist told him that he had a 30% chance of being cured and was puzzled why if the radiation has cured him would he stay on ADT? He acknowledged that the drug was changed prior to his external beam and was part of hormonal control.

Dr Addie Wootton is a clinical psychologist and researcher. The study she is currently working on is exploring the clinical experiences of men with prostate cancer and their partners. She is talking to different groups of men and their partners and asking what their experiences have been like, particularly looking at what the gaps have been in clinical support, information and general support. She asked all who wished to partake to give a brief one-minute summary of where they are at with their prostate cancer. This everyone did.

Addie then asked a number of questions. Question 1: Right now are there gaps in the information that you have been provided? Man #6 observed that he has a very good oncologist but because of time limitations he concentrates on the immediate. To understand the road ahead he has had to largely obtain this information himself.

Question 2: What are the different needs that this advanced cancer group is meeting that may not be discussed in the more localised support groups? Man #9 found that while the general groups were helpful this advanced group enabled him to realise that it is not necessarily a death sentence but rather it was more a management thing. He found it very reassuring to be talking to other men who are battling the same problem and keeping up-to-date.

Question 3: For your prostate cancer do you go primarily to your GP for advice or to your specialist? Man #5 indicated that he had to take charge and make sure information was being communicated between his doctors but generally he sees his medical oncologist. Man #2 and #4 both agreed that you had to manage your treatment yourself. Man #4’s principle adviser is his GP but with the knowledge that there is always his urologist. Man #3 found that there was uncertainty as to which doctor was managing which symptom. Others agreed communication between doctors was a problem.

Question 4: If you feel as though your doctor or whoever you are seeing isn’t looking after you holistically or is neglecting an area, have there been avenues along the way for you to request to see a different doctor? Have you felt confident to ask for a different doctor or different services? Man #5 told of his experience when he transferred from the private to the public system and found communication between doctors greatly improved.

Question 5. Along the way have you been offered or had access to psychology or councillors or social work or physiotherapist? Has it been readily available or hard to get to? Man #4 said he needed assistance and found the councillors at Cancer Council to be magnificent. Man #10 indicated that he is seeing a psychologist and a physiotherapist. Man #5 said he had been offered it under the public system but not the private system.

Question 6: Accessing tailored and relevant information in a timely manner as well as accessing one on one professional support can be quite difficult and PCFA is considering developing an online Internet based service which would include access to clinicians online or over the telephone. A prostate cancer specialist nurse and a physician and potentially a psychologist or a councillor. I am wondering if you think that being able to ask personal questions over the Internet or telephone would have been beneficial to you along the way? Man #5 said that if a telephone support group had been available to him when he was diagnosed that would have been magic. Man #5 agreed that when you are initially diagnosed you do not have enough knowledge to ask the right questions. Listening to discussions really helped him to know what to ask. Man #1 reminded us that one of our members is beyond the black stump with no access to the Internet. Man #3 indicated that he has recently received advice from an overseas specialist using Skype. However, he cautioned that such advice should be seen as coaching rather than a consultation, because local specialists and doctors have greater access to patient history, including pathology, scans, GP and other specialists advice and opinions. He also recommended a separate section for advanced men as the questions are quite different and more complex.

Addie has put together a short survey that can be easily emailed via a link which has space for comments and suggestions. Can this be circulated so that people can give her their information? When asked if she would like to talk to the men who were not present today she replied definitely yes.

Man #5 said that since May he has had increasing bone pain in his right ribs and right shoulder and also his chest. There is a new spot on his left rib and more on his right ribs. In bone scans they only show when they have reached 3 mm. His palliative care consultant is concerned that he is bringing up phlegm; that he goes hoarse quite quickly and finds turning his neck difficult. Man #1 asked the question that if his blood count is satisfactory there is the possibility of intravenous radioactive therapy. These inject particles which go to your bone and irradiate and give relief for multiple metastases.

Man #2 asked about counselling for those with a chronic disease. Man #5 replied that one of the members of the Toowoomba support group has just written a paper on spiritualism and suggested speaking to him. Man #4 said that he does one day per week of chaplaincy at the Wesley hospital mostly with oncology patients. He is very impressed with Cancer Council’s expertise and commitment and help and support in this area.

What was a cure? Man #6 described it as an indefinite remission. Man #7 said that after 30 years remission then you can say you are cured. Man #3 said that once it is out of the prostate he regards it as a chronic illness that you must keep suppressed. Man #7 said that prostate cancer cells can now be detected as circulating tumour cells (CTC) in the blood. These are detectable much earlier than anyone previously believed was the case. From the blood they are thought to hide in the bone niche. So once you have been touched with prostate cancer you probably have it for life. Your immune system sees cancer cells every day of your life and kills them. I follows that you have got to keep your immune system in really good shape.

Man #6 said keep you vitamin D levels where they should be but do not over do it. Have the blood test to check and keep you vitamin D in the top half of the normal range. Man #3 cautioned that too much of most things can be bad and that particularly applies to calcium. Some people need a lot of vitamin D and his doctor gradually increased his dose until with 6 of the 1000IU capsules he scored in the middle of normal.

Man #7 mentioned the Catalyst report on ABC recently. It was about the importance of exercise for cancer and can be downloaded from http://mpegmedia.abc.net.au/tv/catalyst/catalyst_s13_ep11_ExerciseisMedicine.mp4

Man #7 also mentioned that he takes half an adult aspirin daily but even such low doses can cause stomach problems http://www.bbc.co.uk/news/health-18853597

Man #7 went on to add that he takes 3000 mg of Omega 3 daily and this is lower than some recommendations. Man #3 commented that the capsules are not very effective especially when compared to fatty fish once or twice a week.

Man #3 said he thinks of 3 sorts of exercise.

One is just walking the dog at about 3 km per hour if that is all you are capable of. There is considerable extra benefit if you can brisk walk.

Strength or resistance exercise is next. In the advanced prostate cancer booklet appendix 4 it tells you about the types of resistance exercises. Each exercise type has a gym and a home version.

Both strength and aerobic exercises should not make you uncomfortable. When walking, for instance, you should be puffed a little, but still able to hold a conversation. Both too hard and too long such as a marathon is not good for you.

The third sort of exercise is anti-sedentary. It was found that 7 hours of sitting can undo a half hour of exercise. If you are sitting it is recommended to get up every 30 minutes and do something for a minute or two – take on a task in the kitchen during ad breaks on the TV.

And as always, consult your doctor before you undertake a new exercise regime.

Man #8 said that he can no longer run or jump because of poor knees but found that running in a pool gave him 2 benefits. One was the benefit of getting his heart rate up and he has heard this is to 80% of (220 – your age). The other is that his knees have gained from the exercise without aches and pains developing. He also got a social benefit. Man #3 added that using rubber bands (common brand Thera-Band®) can also be helpful when legs are a problem.

Man #6 said that abiraterone (Zytiga®) has been approved by the Therapeutic Goods Association (TGA) but is not yet listed on Pharmaceutical Benefits Scheme (PBS). A phase 3 trial of abiraterone used pre-chemotherapy was halted early because of good results. Information on the trial is available on the groups website accessed through http://www.jimjimjimjim.com then click on Forums. It is in the ‘New Agents’ forum. Man #3 said that abiraterone only works in about 30% of cases.

Man #2 asked about the possibility of a face-to-face meeting and to include partners. One obvious problem was that we are wide spread throughout Queensland and even other states although many are within a days outing to Brisbane. But for those who can get together, it is an idea worth pursuing.

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