Advanced Prostate Cancer Teleconference 2012-04-27

[Euan]

Man #1 was diagnosed in August 2011 with Gleason 4+5 but it had already spread out of the prostate. In January he contacted the Multidisciplinary team (MDT) at the Princess Alexandra Hospital (PA) basically to get a second opinion. He saw Irena once and got all of his questions answered such as when should secondary hormone treatment start and when should the medical oncologist become involved (better sooner or later). One of his metastasis sights is in his L3 vertebra and bone hardening needs to be addressed. He was well satisfied that his medical treatment to date was pretty right. The other issues were around eating correctly, keeping the weight off. His weight went up by 5kgs with hormone therapy. He previously was borderline diabetic and got that under control by diet and weight loss. He is taking Calcium and antioxidants plus he exercises.

The MDT are involved with a number of studies. One study he has agreed to is to find better prostate cancer markers and this involves a PSA check every 6 weeks. Previously he had only had one PSA test because his urologist was of the opinion had many people panic when it is time for the next test.

Man #1 added that when his PSA had jumped to 5 he was referred to a urologist who put him on watchful waiting. For 3 years his PSA stayed in the 4s and 5s. Then jumped to 7 then 11, then 21.5. After a TURP it was up to 28 and was confirmed as cancer, plus it had spread beyond his prostate. He remains very positive and the main side effects are from the Lucrin. He has hot flushes and also cold periods where he shivers for as long as 45 minutes. Others recommended that he asks his doctor about getting his vitamin D checked and keeping it higher than normal plus get his bone mineral density checked. Seeing that he could be on Lucrin for some time it was suggested that he see a medical oncologist and also an endocrinologist. He said he was given a lot of information but only after he was diagnosed and this was too late. He added that there was a palliative care specialist member of the MDT his name was Dr Mark Deuble.

Overall he found Dr Irena Oleinikova a breath of fresh air the experience very positive and worthwhile. To contact the Multidisciplinary Team call Coordinator Linda Crook, Ph: 07 3176 3228 or email: MDT_ProstateCancerAThealth.qld.gov.au (replace the AT with the usual symbol). For more information see:

http://www.australia...ls/for-patients

They need a doctor’s referral, a summary of your medical history, current medications, details of previous treatment, histopathology reports, PSA results and relevant scans and imaging.

Dr Yvonne McMaster agreed that watching for osteoporosis was important, once bone mass is lost it is hard to build it up again. She described a bone scan is where an isotope in injected and they scan for a secondary and a bone density looks through your hip and a couple of vertebra and measures the calcium. Alkaline phosphatase (ALP) is raised with some bony secondaries. It reflects bone damage but does not relate to osteoporosis.

Dr McMaster then said that bone density could be obtained on MBS annually if you are over 70 or are osteoporotic or if you have fractures with minimal trauma. A long time ago they used to scan your wrist but these days it is just you hip and L4 vertebra. Man #2 said that if you have low testosterone that is also covered. Dr McMaster went on to say that CT scans contain 100 times more radiation.

Dr McMaster mentioned that her husband has had prostate cancer and a radical prostatectomy for it, so she has intimate knowledge of it. Palliative care aims to relieve not just your physical symptoms but also your mind. A study has shown that starting palliative care early helps patients to live longer and better. Also they are less likely to have aggressive treatment eg chemo shortly before the end. A significant proportion of the palliative care work involves heart, kidney and lung diseases plus neurological diseases such as motor neuron and dementia. She emphasised not to be afraid of palliative care, as she has known patients to live for many years after being referred to palliative care.

Man #3 said his experience with support groups was that there was little help for men with advanced cancer until this forum was started. Man #4 said that this group had been very helpful with information such as bone density scans and vitamin D. Man #1 found this forum much better than the one he visited in person. Man #5 said he had never visited a support group before but his first meeting where he heard Dr David Grimes talk was the best night he could have gone to. His wife is encouraging him to go back and see a psychologist as he was much better when he was seeing her. Dr McMaster agreed it was a very difficult thing to think about the shortening of your life. Many adopt a dogged determination to battle on no matter what. There is also the hope that this period will be just as good as it possibly can be. Lots have people have said to her that the last six months of my life have been the very best.

Man #6 said that he was involved in producing a report on advanced cancer for the Prostate Cancer Foundation of Australia (PCFA) at the start of 2011. These proposals have been interrupted by the staff changes and the requirements for managing the extra money from the government. It includes support for advanced cancer but these are not likely to happen until the end of this year.

Man #7 said that the abiraterone (Zytiga®) trial he managed to get on has dropped his PSA down to 30. His PSA is checked every two months and he has no side effects from the drug.

Man #5 who will be 68 in July told his story. Starting in 1998 he had nocturia (excessive urination at night), as well he had some hip pain. The urologist did PSA and DRE checks and found nothing to explain his 7 to 10 toilet trips each night. Several specialists diagnosed his hip pain as either bruising, a fracture, or Paget’s disease (twice). After 8 months one specialist took his scans to a meeting at the PA. Another specialist there recognised a form of cancer he was dealing with and immediately had him into hospital for tests. He cannot remember the name off this cancer but he was also diagnosed with lymphoma and because it was well advanced was given just 5 years to live. After 6 months of chemo followed by radiation he was in remission. After more checks by a urologist he was given medication for his borderline diabetes insipidus and this did ease his symptoms.

In May 2005 after a small rise in his PSA a biopsy confirmed a Gleason 7 cancer. He chose to have permanent seed brachytherapy but a preliminary scan showed that his lymphoma was back but this time more aggressive. January 2006 he was back on chemotherapy. He had two types of chemo followed by a final one, which destroyed his immune system followed by a stem cell transplant. In July it will be 6 years in remission. Now because of all the radiation to this area both surgery and radiation (including brachy) were ruled out. After more hormone therapy (Zoladex®) he had high frequency ultrasound (HIFU) to remove his prostate. He was also seeing a psychologist because of the side effects from Zoladex. He came off Zoladex and went onto Androcur® tablets and his PSA dropped only to 1.3. But 3 months later it was 3.8. He would very much prefer to have his prostate cancer treated at the PA because they have all his records plus his other doctors. The MDT sounded the way to go but he did not wish to wait for months. Several men commented that it depends on how urgent your case is but the wait is not excessive.

Man #7 said that his story was similar. He was diagnosed in 1996 but also found that he had non-Hodgkin’s lymphoma. The lymphoma was treated first then he had a radical prostatectomy. Man #5 said that his bone scan in January was clear other than a few hot spots that were attributed to arthritis. His rheumatologist is not so certain as he has no symptoms.

Man #6 mentioned that he has been on Lucrin for 6 years and while similar to Zoladex may not affect him quite as badly. Seeing an oncologist who is very familiar with these drugs was recommended. Antiandrogen drugs other that Androcur, an old drug, were also mentioned. Trials of abiraterone or MDV3100 were also mentioned as a possibility but his lymphoma may be an issue.

Man #8 was puzzled as to why his PSA had dropped from 22 to 0.4 in 2 months. Man #2 said that when you go on hormone therapy you can expect your PSA to half roughly every 2 weeks which is very rapid. Man #8 went on to say that no one other than this support group has ever suggested that he ask his doctor about a bone density test. Man #2 explained that unfortunately this is normal but there is a an article in the Medical Journal of Australia in March 2011 which strongly recommends to doctors to get bone density measurements done annually for the first 2 years. Man#8 said that he has been on treatment for a bit over 5 years now. When he was on Zoladex and Androcur for 3 years he had bad depression and had to come off Androcur. He was off everything for 18 months now has gone onto Cosudex for a month plus Lucrin. Because of his tiredness, weakness and hot flushes he came off Cosudex. Man #6 emphasised the importance of a bone density scan, which can be done through his GP. Man #4 explained that you will know if you have had a bone density scan because you get a nice colourful printout. A list of recommended tests for men on hormone therapy was recommended by all.

Man #9 was diagnosed in 2009 aged 47. Following a pain in his groin, which a physio could not fix, an a MRI showed a mass in his pelvis. He was referred to an oncologist and urologist. His PSA was 21 and his biopsy recorded two Gleason 10s, Started on bicalutamide (Cosudex®) and Zoladex®. After 3 months his PSA was down to 0.1 and he was taken off Cosudex. After a further 9 months he was also taken off Zoladex and then 9 months his later PSA was back to 4. He then opted to recommence and when his PSA got down to 0.7 he dropped the Cosudex. Then after a few months his PSA started to rise so he went back on the Cosudex. His PSA is now 5 with both Cosudex and Zoladex. He hopes to be on a trial commencing in June with Cabazitaxel he thinks it is. He has had 2 bone scans and both were clear. He also had radiation to his pelvis for pain relief, which worked very well. When he asked about treatment for his prostate he was told that because of scarring from the previous radiation both surgery and further radiation was not advisable. Dr McMaster advised that radiation could be very useful to control the pain. She also advised that reducing the tumour load with radiation is a good thing.

Man #10 said he attended a talk by Dr David Grimes 2 weeks earlier who said that a recently published study showed that continuous vs. periodically hormone therapy showed no difference in longevity but periodically had better quality of life. Man #9 said he was advised to drop the Cosudex because it was no longer working and is going on one of the trials. Would it be a good idea to try nilutamide (Anandron®) instead? Man #6 said that the switch to nilutamide had shown a small benefit for him but may not work for someone else. Man #4 said that he asked Dr Grimes if he would suggest adding Cosudex when his PSA failed and he replied that he preferred nilutamide. Man #9 said that at the conference on the Gold Coast their view was to try as many as you can and keep changing. Man #3 said that he was told that abiraterone would be available in 3 to 4 months – 6 on the outside. Man #6 said when it is added to the PBS it will likely be only for men who are post chemotherapy. Man #2 confirmed that abiraterone was rejected in England and because it was so expensive it also may not be accepted for listing on the PBS. Man #6 said that he had hoped to get on to an MDV3100 pre chemotherapy trial but it is pretty well completed now.

The three men who spoke so openly about their journey were thanked for their honesty.