Monday, 28 July 2014
Saturday, 26 July 2014
Associate Publicist, Demos Health
11 West 42nd Street, 15th Floor
New York, NY 10036
In the days before prostate-specific antigen (PSA) could be measured by a blood test, it was common for men to appear in the doctor’s office complaining about pain, which would turn out to be due to the spread of prostate cancer to their bones. The standard therapy at that time was orchiectomy, or surgical removal of the testicles. The testicles produce testosterone, a male hormone, or androgen, known to stimulate the growth of prostate cancer. In the early 1940s, this procedure had been shown to relieve pain due to metastatic prostate cancer, and thus became the “gold standard” for treating the disease. The early 1980s saw the approval of injectable drugs called gonadotropin- releasing hormone (GnRH, also called luteinizing hormone-releasing hormone, LHRH) analogs, which offered a much-needed alternative to the permanent orchiectomy. Since these drugs could turn off the testicular production of the androgen testosterone, the treatment was called androgen deprivation therapy (ADT). Many men opted for the drugs rather than orchiectomy. Soon after the GnRH analogs became available, the U.S. Food and Drug Administration (FDA) approved the PSA test. Over time, this test allowed us to find a whole new population of prostate cancer patients, namely, those men who had had surgery or radiation for localized prostate cancer and who now had a rising PSA measurement without any evidence of disease having spread to their bones or elsewhere. This condition is commonly called “biochemical relapse” because only the blood test indicates return of the cancer. Out of concern for the continuously rising PSA, we often started ADT, even though the men did not have any evidence of metastases. In most cases, ADT was very successful in bringing the PSA down to undetectable levels for long periods of time.
However, I began to hear from patients treated with ADT shots for biochemical relapse that they were feeling fatigued and experiencing a whole host of other symptoms. In the past, I had often encountered men with metastatic disease, who had either started the ADT injections or had had an orchiectomy, complain of fatigue. My naïve response was, “Of course you have some fatigue. You have metastatic prostate cancer.” But now a light bulb went off: the fatigue and other symptoms experienced by the biochemical relapse patients were from the ADT! Unlike the men I had encountered earlier in my practice, these men did not have metastases and had been feeling fine before the shots were started. Thus began an era of intense clinical research on the effects of ADT on the physiology, psychology, and cognitive functioning of men so treated.
The list of potential side effects of ADT is lengthy, and the list of different ways to address these side effects is even longer. Busy physicians may have only enough time to skim over these details, leaving the patient and his family unprepared for what to expect. In spite of our best efforts to educate patients and their partners about ADT, we often still feel we are not doing enough.
I met Richard Wassersug in 2006, when he came to Seattle for a visit. He was interested in intermittent ADT, and we met in a conference room with Monique Cherrier, PhD, my colleague who has collaborated with me in studying the effects of ADT on cognitive function. Dr. Wassersug explained that he was a scientist who primarily studied amphibian developmental biology, but, more importantly for our conversation, he was a man who had prostate cancer. As a scientist, he was a keen observer of the side effects of ADT and was also doing some laboratory and clinical research with colleagues in Halifax on the effects of ADT. Through research, personal observation, and staying in tune with men treated with ADT all over the world via Internet blogs and websites, Dr. Wassersug has accumulated a vast understanding of the side effects, how to explain them, and how to talk with men about dealing with them.
Around the same time as my meeting him, Dr. Wassersug sought out Dr. Robinson of the Tom Baker Cancer Centre. Soon they began collaborating. Dr. Robinson, a renowned psychosocial oncologist working with couples affected by cancer, clearly valued the dual perspective of Dr. Wassersug, the prostate cancer patient, and Dr. Wassersug, the research scientist.
Dr. Robinson and his then student, Lauren Walker, have since then been collaborating with Dr. Wassersug on various projects related to ADT. Dr. Wassersug found in Drs. Robinson and Walker specialized clinical skills, patient education expertise, and invaluable knowledge of a broad range of patient experiences. Equally passionate about improving the lives of men on ADT, these three individuals, plus other collaborators along the way, have significantly changed the ways in which patients are cared for while on ADT.
As a research team, Drs. Wassersug, Robinson, and Walker have found that patients and their partners remain poorly informed about the side effects of ADT. They established an ADT Working Group of about 20 professionals (i.e., researchers and clinicians) that make recommendations about the psychosocial care of men on ADT. Their research has demonstrated considerable variability in the information that health care professionals believe to be essential to provide to patients. As a team, Drs. Wassersug, Robinson, and Walker have worked to develop educational initiatives for patients, partners, and health care professionals, to help patients prepare for and manage the changes associated with ADT. This book is the culmination of several years of their work.
This book is different from consultations with specialists or conversations with nurses and doctors: it is something you can take home, read, and work on at your own pace, on your own time. You can read it in whatever order is of interest, skipping sections that may not be significant to you at this time, or going back and reviewing specific sections later. Importantly, this book emphasizes the impact of ADT on partners, so if you have one, it is highly recommended that you read it with him or her. It turns out that ADT can profoundly affect your relationships, so it is critical to address all parties concerned, not just the one receiving ADT.
This is not just a book that you read; it is a book that you do. It will serve as a reference and will complement whatever your medical team has taught you. It will allow you and your partner to better understand what is going on, and why, and it will help you to better deal with some of the side effects of ADT. It is a fantastic resource for patients and their families that is long overdue. As Sir Francis Bacon said in 1597, “knowledge is power.” Get going on doing this book, and in the process take back the power that prostate cancer has been stealing from you. You’ll be glad you did.
Celestia (Tia) Higano, MD
Professor, Medical Oncology Division
University of Washington, School of Medicine
Friday, 18 July 2014
Proud to say that I am now a 'temporary resident' of this amazing country, which means I can live here for up to 4 years and come and go as I please. I have all the rights of a permanent resident, except I can't vote! Also, I can now apply for permanent residency. Wish I'd done that when I was 15, but things were very different here then.
Monday, 14 July 2014
Today, Tuesday 15th July 2014 this blog made 60,000 hits!!!! Thank you from all around the world, and I hope this will be a place that you can come back to and feel comfortable with in the future.
"Stop acting as if life is a rehearsal. Live this day as if it were your last. The past is over and gone. The future is not guaranteed".
Who said that?
North Cumbria University Hospital's Trust has just been inspected and it's not a good read. See full report here REPORT
It ranked very well on 'caring', but caring isn't enough when you might have something life threatening.
So, what if you are diagnosed with prostate cancer in 2014 and you live in Cumbria.
The message is still the same as when I was diagnosed in June 2010 at the Cumberland Infirmary by Mr Bashir. Get the hell out of there!
You are allowed to go to any hospital in the UK for treatment but you should research well before making that choice. I went to Addenbrookes, undoubtedly one of the finest specialist hospitals in this field.
Be careful when asking your own doctor for advise, they are highly unlikely to recommend you leave the local trust for treatment. They have a vested interest in supporting their colleagues, often friends at the local hospitals.
If in doubt, please contact me and I'll talk you through this. It's when you are first diagnosed that you are most vulnerable, but it's also the time you have to make crucial decisions.
Thursday, 10 July 2014
The Partin tables use clinical features of prostate cancer - Gleason score, serum PSA and clinical stage - to predict whether the tumour will be confined to the prostate. The tables are based on the accumulated experience of urologists performing radical prostectomy at the James Buchanan Brady Urological Institute. For decades, urologists around the world have relied on the tables for counselling patients preoperatively and for surgical planning.
Tuesday, 8 July 2014
Abiraterone can give prostate cancer sufferers years of relief before chemo.
- But Nice has made 'bizarre' decision to ban use of the drug.
- Now an MP has called on Department of Health to act over ban.
By JENNY HOPE
PUBLISHED: 07:42 GMT, 29 June 2014
The rationing watchdog Nice is poised to make a ‘bizarre’ decision that would needlessly condemn men to hair loss and other unpleasant side effects from chemotherapy, it is claimed.
The drug abiraterone can give men with advanced prostate cancer months or even years of relief before they need chemotherapy, but Nice insists chemo must be used first.
More than 3,000 men benefited from the drug last year via the Cancer Drugs Fund in England, special funding used for medication not approved for routine NHS use.
It was the second most-requested treatment – around one in six total requests – and they were all for use prior to chemotherapy.
Paul Burstow, a Liberal Democrat MP, said the Department of Health must step in to halt the plan.
The ex-Minister of State in the Department of Health himself intervened when he was in charge two years ago after Nice threatened not to allow the drug to be used at all.
As a result Nice did a U-turn and doctors were allowed to give the drug on the NHS after chemo.
But advances mean it could now be used earlier in treatment with men having fewer side effects and improved quality of life before needing chemotherapy.
The National Institute of Health and Care Excellence (Nice) says the drug would not be cost-effective at this stage of treatment.
Mr Burstow said ‘The idea of restricting the drug so men have to have chemotherapy first, when their hair may fall out and they suffer other side effects, seems bizarre.
‘There is no reason why this drug could not be assessed in the same way as before, giving men added quality of life towards the end of their life.’
The drug abiraterone can give men with advanced prostate cancer months or even years of relief before they need chemotherapy. Pictured, prostate cancer cells.
He has written to the current health minister Jane Ellison urging her to act as he did in 2012 to prevent the ban as there would be guarantee it would remain available to patients before chemo and some might not get it all.
Campaigners say the latest plan is stark evidence of the neglect of sufferers from a disease that strikes 40,000 British men each year.
Some Britons have survived on abiraterone for almost five years.
The official price of a month’s treatment is £3,000 but the NHS pays less through a discount scheme from manufacturer Janssen.
Cancer Research UK says the plan makes no sense as the drug is likely to be more effective before chemotherapy.
Abiraterone, also known as Zytiga, was developed by British scientists.
'He experienced none of the weariness and fatigue that he had with other medications.
'Abiraterone allowed my husband to live an independent life and it delayed the use of doxetaxel chemotherapy'
- Christine Emerson, wife of a prostate cancer sufferer
Professor Paul Workman, Deputy Chief Executive of The Institute of Cancer Research, London, where the drug was developed, said: ‘Abiraterone is now used as standard after chemotherapy and has extended the lives of thousands of men in the UK with advanced prostate cancer, with fewer side-effects than chemotherapy.
‘The decision to refuse use of abiraterone before chemotherapy will deny many thousands of men the opportunity to access the drug earlier in their course of treatment.’
Christine Emerson, 61, who lives with her 66-year-old husband Terry in north-west London, says he was fortunate in getting the drug for eight months before he needed chemotherapy.
She said ‘It gave him a good quality of life with no side effects at all. It has given him further quality time with his family.
‘He experienced none of the weariness and fatigue that he had with other medications.
‘Abiraterone allowed my husband to live an independent life and it delayed the use of doxetaxel chemotherapy.
‘Once that failed, the tumour in his spine progressed and he is now confined to a wheelchair and also has the debilitating effects of the chemotherapy treatment.’
In 2012, Nice attempted to ban the use of abiraterone altogether but was forced into a U-turn after a public outcry and a rare intervention from the Department of Health.
Owen Sharp, Chief Executive of Prostate Cancer UK said ‘It is no secret that we think it deplorable that abiraterone pre-chemotherapy could be denied for use on the NHS in England and Wales.
‘We know first hand from those who have been able to access abiraterone through the cancer drugs fund for use in this way, that it can offer a vital chance to delay chemotherapy and the debilitating side effects which can come with it.
‘We have urged Janssen and NICE to work together to do everything in their power to make this vital treatment available as soon as possible for all who need it. We welcome any intervention which could lead to the right decision being made for men.’
A Department of Health spokesperson said ‘Abiraterone is already available through our Cancer Drugs Fund to prostate cancer patients.’
Read more: http://www.dailymail.co.uk/news/article-2673814/NHS-drugs-watchdog-urged-call-ban-prostate-cancer-treatment-condemn-thousands-men-hair-loss-chemo-effects.html#ixzz36t7EmNzV
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Sunday, 6 July 2014
I get hits on this blog from all around the world, from China to Mexico, New Zealand to Canada. In the early days, the UK was always top by far, followed by the USA. Until recently, my top weekly hits have always been the USA, closely followed by the UK, then a constantly changing raft of other countries.
However, I'm surprised by changes to the statistics in the past month, which has seen a dramatic surge in hits from Saudi Arabia; 44 in just the past week.
If you are one of those hits, please get in touch as I am extremely curious.
Saturday, 28 June 2014
I've got my BA hons in 'Wildlife & Media', a 2.1 which is a 'B' overall.
I'm delighted with that, after all, I was diagnosed with prostate cancer at the start of year one, so wasn't sure what graduation would look like.
Hard to believe that 6 years ago the process started when I had to first take an NVQ in both English and Maths just to qualify for the access to art year. That year was still the best of all my years at the University of Cumbria. The worst was the final year which I spent making a training film for Cumbria Wildlife Trust. We were told that one day we would be making films for paying customers and we had to listen very carefully to what the customer asked for. I went one better, I found a real customer, worked with them on making this film to their exact requirements. I added stuff they wanted and took bits out when asked.
They were 100% delighted with the final film, so much so they embedded it on their website and sent me a great thank you letter, asking if I would work on other projects with them. To me that had to be an 'A', don't you agree? What I should have realised, and you must realise if you ever take this degree, is this… Whatever anyone tells you, you are making this film for the person who marks it. If they like squirrels, make a film on squirrels, if they like Star Trek, make a film on Klingons, but if they like drama, DO NOT make a film on planting Junipers! You will fail!
The world cup dominates everywhere and no more than Luis Suarez with a ridiculous 9 match ban for leaving an affectionate nibble mark on an Italian drama queen. I've seen legs broken deliberately in football and not even a yellow card given. Suarez was executed by the media and the competition will be a duller place without him. I'm still thinking the Germans and Dutch will meet in the final, but what do I know, I'm second from bottom in the fantasy league with Beverley way out in front. How is this possible?
I went to my daughter Luci's 30th birthday party dressed as a bishop a few years ago. The fancy dress shops just didn't do the quality I wanted so I ordered from an ecclesiastical suppliers, Hayes & Finch Ltd. They do everything from a glitter/gold bishop's robe to a 5 litre box of communion wine, just about all of Christ's blood represented in one carton, on tap. Well a year went by after receiving my holy shirt under the name of 'Bishop Daniel Sencier'; even the postman had a strange respect after that delivery.
I then recieved an e-mail from Hayes & Finch last week asking if I had been disappointed with their service in some way, as I hadn't placed an order for over a year. I had to tell the truth, there was no other way, so I replied….
"Hi Andrew, thanks for getting in touch. Your company and products are great and I'd recommend them to all. I just went through a phase of dressing up as a bishop, I'm not sure why, I blame my parents, but it's ended now! I went to a pub in Glasgow with my new outfit on and everyone wanted to kiss my ring and buy me drinks, it was amazing, especially as my girlfriend went as a comedy pig. People look at you so differently when you are in those clothes; with such hope and faith, it's been an experience I'll never forget. I ordered from your company as I had to have the real stuff, I didn't want to look a cheap fraud. I've attached a photo. I hope to use your services again one day. I'm currently dressing as a paramedic!"
Did I do wrong?
I met with Iain from the South African Prostate Cancer Foundation this week, a really nice guy. The UK are so ahead in this field compared to South Africa. I sent him loads of links including to the UK Prostate Charity and Macmillan's.
You can see these links at the top of the blog. There is so much research duplicated around the world, maybe it should be just in a few specialist centres, with support and awareness more of a localised thing.
We are hoping to go back to the UK for a few weeks soon, only been away 8 months but can't say I've missed it very much. What am I looking forward to most? Paying over double for my poorer quality food and drink? Paying double for my petrol? Paying 20 times the price for my TV license? We were out shopping this morning and as always, were stunned by the variety, quality and prices on the shelves. It's like being in some dreamland, even better than France! I'll look forward to seeing my kids that's for sure, but to be fair, I have more contact now than ever before. I guess I'll become a reality TV show to the grandchildren on Skype.
Me with Madame Zingara
I can't talk about our work on here, sensitive stuff, but since forming our new company it's been a dream. Not having to tip-toe around, afraid of upsetting others, making decisions for ourselves and working hard to achieve goals. All sorts going on and stuff in the pipeline, I've never had such variety in a day/week/year! At the same time we are having fun and doing things that neither of us ever dreamt we would. Let's see how South Africa turns out before we decide to head off elsewhere. We are temporary residents here now so can return anytime to live.
If you ever get a chance to see a show called 'Madame Zingara', then go! You will never, ever attend a better performance or have a more amazing evening!
As you eat a 4 course quality meal, delivered throughout the evening, the performance happens all around and above you. It's an experience of a lifetime!
Thursday, 26 June 2014
The £10 prostate test: New cancer check is twice as accurate - with no need for that embarrassing examination.
New urine test is twice as reliable as the existing blood test for the disease.
It also tells doctors how serious it is - and no need for rectal examination.
Prostate cancer kills nearly 11,000 British men every year.
A cheap, easy and accurate test for prostate cancer could be in surgeries within months.
Studies show the new urine test to be twice as reliable as the existing blood test for detecting the disease – the most common cancer among British men.
It also tells doctors how serious the cancer is.
This means it should not only save lives but also spare men painful, embarrassing and unnecessary tests and treatments.
The new test – described as potentially the biggest breakthrough in prostate cancer diagnosis in 25 years – does not involve a rectal examination.
It is likely to cost as little as £10 a patient, and the price tag, combined with its accuracy and simplicity, could even lead to all older men being screened for the disease, as women are for breast cancer.
The test’s Surrey University creators have struck a deal with two companies and it is hoped it will be in doctors’ surgeries later this year. Private patients will be the first to benefit but NHS use could follow.
Inventor Hardev Pandha, a professor of medical oncology, said: ‘This new test could lead to faster detection that could save hundreds of lives and also offers the potential for huge cost savings.’
Prostate cancer is the most common cancer in British men, killing nearly 11,000 people a year, and doctors do not have a 100 per cent accurate way of spotting it.
The blood test routinely used measures levels of a protein called prostate specific antigen, or PSA, but it is wrong more often than it is right. This means many men are subjected to the pain, worry and embarrassment of unnecessary biopsies. In other cases, fledgling cancers are missed until they have spread elsewhere in the body and are harder to treat.
The new test uses a urine sample, dispensing with the need for needles. It searches the urine for a protein called EN2, which is not made by healthy people but is pumped out by tumours.
In trials, it detected about 70 per cent of prostate cancers, making it twice as accurate as the PSA test.
But the test has a second advantage. Unlike PSA, the amount of EN2 in urine corresponds with the size of the tumour.This is important because prostate cancer is not always life-threatening. It often grows slowly and does not always need to be treated straight away.Many men with tumours that will do them little harm are subjected to surgery and radiotherapy, both of which carry a high risk of incontinence and impotence.
The new test uses a urine sample, dispensing with the need for needles. It searches the urine for a protein called EN2, which is not made by healthy people but is pumped out by tumours, and is 70 per cent reliable
Professor Pandha, who created the test with Dr Richard Morgan, added: ‘Our trials have shown that levels of EN2 accurately reflect the amount of cancer in the patient’s prostate gland.
‘Small prostate cancers do not require treatment and can be safely monitored; larger volume cancers require prompt treatment.
‘The EN2 test allows for the urologist to determine which option is best for the patient.’
Tim Sharp, of the Prostate Project, which part-funded the research, said: ‘This is potentially the most exciting development in the diagnosis of prostate cancer for 25 years.’
Prostate Cancer UK said Professor Pandha’s results were encouraging but added that large-scale, long-term trials were needed.
Dr Peter FitzGerald, of Randox Laboratories, one of the two companies that will turn the research into a kit for use in doctors’ surgeries, said: ‘With prostate and bladder cancers being among the top ten common causes of cancer death, accurate diagnosis is incredibly important.’
Read more: http://www.dailymail.co.uk/health/article-2573395/The-10-prostate-test-New-cancer-check-twice-accurate-no-need-embarrassing-examination.html#ixzz35kOSFSuT
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Wednesday, 18 June 2014
I can't tell you how delighted beyond words we are that Tselane Tambo has offered to be an ambassador for our company, 'e-perceptum Ltd'. She is an inspirational, very deep person, artistic in every sense and truly connected to South Africa, past and present. This has been the icing on our cake in a week that has seen us visiting the Department of Basic Education in Pretoria and laying out our plans for e-learning in a country that is thirsting for education. Tselane said that, "Everything that anyone ever wants to know today is on the Internet. E-learning is the future. The future starts now and South Africa needs to be with the programme". Who could disagree?