I have prostate cancer. But I am happy | George Monbiot

The three principles that define a good life will protect me from despair, says Guardian columnist George Monbiot

It came, as these things often do, like a gunshot on a quiet street: shocking and disorienting. In early December, my urine turned brown. The following day I felt feverish and found it hard to pee. I soon realised I had a urinary tract infection. It was unpleasant, but seemed to be no big deal. Now I know that it might havesavedmy life.

The doctor told me this infection was unusual in a man of my age, and hinted at an underlying condition. So I had a blood test, which revealed that my prostate-specific antigen (PSA) levels were off the scale. An MRI scan and a mortifying biopsy confirmed my suspicions. Prostate cancer: all the smart young men have itthisseason.

On Monday, I go into surgery. The prostate gland is buried deep in the body, so removing it is a major operation: there are six entry points and it takes four hours. The procedure will hack at the roots of my manhood. Because of the damage that will be caused to the surrounding nerves, theres a high risk of permanent erectile dysfunction. Because the urethra needs to be cut and reattached to the bladder, I will almost certainly suffer urinary incontinence for a few months, and possibly permanently. Because the removal of part of the urethra retracts the penis, it appears to shrink, at least until it can be stretched back into shape.

I was offered a choice: radical surgery or brachytherapy. This means implanting radioactive seeds in the parts of the prostate affected by cancer. Brachytherapy has fewer side effects, and recovery is much faster. But theres a catch. If it fails to eliminate the cancer, theres nothing more that can be done. This treatment sticks the prostate gland to the bowel and bladder, making surgery extremely difficult. Once youve had one dose of radiation, they wont give you another. I was told that the chances of brachytherapy working in my case were between 70 and 80%. The odds were worse, in other words, than playing Russian roulette (which, with one bullet in a six-chambered revolver, gives you 83%). Though I have a tendency to embrace risk, this was not an attractive option.

It would be easy to curse my luck and start to ask, Why me? I have never smoked and hardly drink; I have a ridiculously healthy diet and follow a severe fitness regime. Im 20 or 30 years younger than most of the men I see in the waiting rooms. In other words, I would have had a lower risk of prostate cancer only if I had been female. And yet I am happy. In fact, Im happier than I was before my diagnosis. How can this be?

The reason is that Ive sought to apply the three principles which, I believe, sit at the heart of a good life. The first is the most important: imagine how much worse it could be, rather than how much better.

When you are diagnosed with prostate cancer, your condition is ranked on the Gleason Score, which measures its level of aggression. Mine is graded at seven out of 10. But this doesnt tell me where I stand in general. I needed another index to assess the severity of my condition, so I invented one: the Shitstorm Scale. How does my situation compare to those of people I know, who contend with other medical problems or family tragedies? How does it compare to what might have been, had the cancer not been caught while it was still apparently confined to the prostate gland? How does it compare to innumerable other disasters that could have befallen me?

When I completed the exercise, I realised that this bad luck, far from being a cause of woe, is a reminder of how lucky I am. I have the love of my family and friends. I have the support of those with whom I work. I have the NHS. My Shitstorm Score is a mere two out of 10.

The tragedy of our times is that, rather than apply the most useful of English proverbs cheer up, it could be worse we are constantly induced to imagine how much better things could be. The rich lists and power lists with which the newspapers are filled, our wall-to-wall celebrity culture, the invidious billions spent on marketing and advertising, create an infrastructure of comparison that ensures we see ourselves as deprived of what others possess. It is a formula for misery.

The second principle is this: change what you can change, accept what you cant. This is not a formula for passivity Ive spent my working life trying to alter outcomes that might have seemed immovable to other people. The theme of my latest book is that political failure is, at heart, a failure of imagination. But sometimes we simply have to accept an obstacle as insuperable. Fatalism in these circumstances is protective. I accept that my lap is in the lap of the gods.

So I will not rage against the morbidity this surgery might cause. I wont find myself following Groucho Marx who, at the age of 81, magnificently lamented: Im going to Iowa to collect an award. Then Im appearing at Carnegie Hall, its sold out. Then Im sailing to France to pick up an honour from the French government. Id give it all up for one erection. And today theres Viagra.

The third principle is this: do not let fear rule your life. Fear hems us in, stops us from thinking clearly, and prevents us from either challenging oppression or engaging calmly with the impersonal fates. When I was told that this operation had an 80% chance of success, my first thought was thats roughly the same as one of my kayaking trips. And about twice as good as the chance of emerging from those investigations in West Papua and the Amazon.

There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Dont Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.

The super-volunteer Jeanne Chattoe, whom I interviewed recently for another column, reminded me that, just 25 years ago, breast cancer was a taboo subject. Thanks to the amazing advocacy of its victims, this is almost impossible to imagine today. Now we need to do the same for other cancers. Let there be no moreterriblesecrets.

So I have sought to discuss my prostate cancer as I would discuss any other issue. I make no apologies for subjecting you to the grisly details: the more familiar they become, the less horrifying. In doing so, I socialise my condition. Last month, I discussed the remarkable evidence suggesting that a caring community enhances recovery and reduces mortality. In talking about my cancer with family and friends, I feel the love that I know will get me through this. The old strategy of suffering in silence could not have been more misguided.

I had intended to use this column to urge men to get themselves tested. But since my diagnosis, weve discovered two things. The first is that prostate cancer has overtaken breast cancer to become the third biggest cancer killer in the UK. The second is that the standard assessment (the PSA blood test) is of limited use. As prostate cancer in its early stages is likely to produce no symptoms, its hard to see what men can do to protect themselves. That urinary tract infection was a remarkably lucky break.

Instead, I urge you to support the efforts led by Prostate Cancer UK to develop a better test. Breast cancer has attracted twice as much money and research as prostate cancer, not because (as the Daily Mail suggests) men are the victims of injustice, but because womens advocacy has been so effective. Campaigns such as Men United and the Movember Foundation have sought to bridge this gap, but theres a long way to go. Prostate cancer is discriminatory: for reasons unknown, black men are twice as likely to suffer it as white men. Finding better tests and treatments is a matter of both urgencyand equity.

I will ride this out. I will own this disease, but I wont be defined by it: I will not be prostrated by my prostate. I will be gone for a few weeks but when I return, I do solemnly swear I will still be the argumentative old git with whom you are familiar.

George Monbiot is a Guardian columnist

Prostate Cancer UK can be contacted on 0800 0748383

Read more: https://www.theguardian.com/commentisfree/2018/mar/13/prostate-cancer-happy-diagnosis-operation

Spread of breast cancer linked to compound in asparagus and other foods

Using drugs or diet to reduce levels of asparagine may benefit patients, say researchers

Spread of breast cancer linked to compound in asparagus and other foods

Using drugs or diet to reduce levels of asparagine may benefit patients, say researchers

Read more: https://www.theguardian.com/science/2018/feb/07/cutting-asparagus-could-prevent-spread-of-breast-cancer-study-shows

NFL concussion: researchers hope blood tests can better detect head trauma

Several firms trying to develop new methods to assess extent of damage to head and brain

In the second quarter of an NFL game on Thursday night, the Baltimore Ravens quarterback Joe Flacco slid to gain a first down. The 233lb Miami Dolphins linebacker Kiko Alonso flew into him, ploughing shoulder-first into his head.

Such was the force of the hit, Flaccos helmet flew off. He walked from the field but he was dazed and bleeding from one ear. There was little doubt he had suffered a concussion.

It was an extreme example of the brutal reality of football. Many head injuries caused by the game, however, are harder to detect, the product of collisions repeated over time. Some researchers think a blood test may soon be one way of detecting such problems.

At this point there are probably as many as 20 to 25 incredibly insightful biomarkers for brain health, said Kevin Hrusovsky, chief executive of Quanterix, a startup that is one of a handful of companies seeking to develop standardized blood tests to detect concussions.

We are hopeful we will be able to transform brain health in the way weve transformed cardiac health and even cancer health.

Researchers at Quanterix and other companies hope blood tests will soon look for evidence of Alzheimers or dementia, much as standard cholesterol tests now help to assess heart problems.

I think about [such tests] every minute of every day, said Robert Stern, a researcher at Boston University who co-authored a landmark study that found the degenerative disease chronic traumatic encephalopathy (CTE) in the brains of 110 of 111 dead NFL players.

Since the 1920s, researchers have known that repeated blows to the head can result in cognitive degeneration. Recent research has shown how severe such damage can be. However, because CTE in particular can only be diagnosed after death, it is almost impossible to know how many people have it.

Theres been tremendous advances over the last two years with regard to fluid biomarkers and Alzheimers disease, said Stern. We can then exploit whats being done in that area for CTE.

Kiko Alonso hits Joe Flacco.

Blood tests for concussive injury could help manage neurodegenerative diseases, for example, answering with more certainty questions about how long an athlete should stay out of play; whether a person is predisposed for neurodegenerative disease; or whether disease is advancing. Stern and others hope the technology will eventually help ordinary people too, such as car accident victims.

There is still disagreement on how tests for concussion, and then neurodegeneration, might be applied. Stern sees a blood test as the first in a series of more specific panels, the way a breast cancer patient might first receive a mammogram, then a biopsy. Hrusovsky hopes degenerative diseases will be found in one blood test hopefully, of course, one developed by his company.

Neurologists currently rely on a series of cognitive tests to see whether symptoms of traumatic brain injury are present. Perhaps that is why Quanterixs work has caught the imagination of the public and the attention of the NFL. Through a partnership with General Electric, the league has given Quanterix $800,000 to continue the research, Bloomberg BusinessWeek reported.

I did the math today, said Pete Cronan, a former linebacker with Washington and the Seattle Seahawks, when asked about his concussions. Ive got six I can remember through my life. The first was when he fell out of a bunk bed as a kid.

But those are the ones that I can remember, he said.

Researchers now consider blows that do not concuss but produce altered states to represent a cumulative danger.

There were thousands of those in my life, Cronan said.

According to the Baltimore Sun, Flaccos injury was the first reported concussion of his 10-year, Super Bowl-winning career.

Were 30-plus years into studying these fluid-based biomarkers, and the data definitely supports that they can be used to correlate quite nicely with injury severity, said Joshua Gaston, a researcher at the University of Texas Southwestern medical center who is also a football fan.

The work was now focused, he said, on making tests reproducible, sensitive, specific.

Read more: https://www.theguardian.com/sport/2017/oct/30/nfl-concussion-head-trauma-researchers-blood-tests

More than 25 million people dying in agony without morphine every year

Concern over illicit use and addiction is putting morphine out of reach for millions of patients globally who need it for pain relief

More than 25 million people, including 2.5 million children, die in agony every year around the world, for want of morphine or other palliative care, according to a major investigation.

Poor people cannot get pain relief in many countries of the world because their needs are overlooked or the authorities are so worried about the potential illicit use of addictive opioids that they will not allow their importation.

Staring into this access abyss, one sees the depth of extreme suffering in the cruel face of poverty and inequity, says a special report from a commission set up by the Lancet medical journal.

In Haiti, for instance, says the report, there are no nursing homes or hospices for the dying and most have to suffer without pain relief at home.

Patients in pain from trauma or malignancy are treated with medications like ibuprofen and acetaminophen, says testimony from Antonia P Eyssallenne of the University of Miami School of Medicine. Moreover, nurses are uncomfortable giving high doses of narcotics even if ordered to do so for fear of being responsible for the patients death, even if the patient is terminal.

Death in Haiti is cruel, raw, and devastatingly premature. There is often no explanation, no sympathy, and no peace, especially for the poor.

A doctor in Kerala, India, which has a palliative care service, told of the arrival of a man in agony from lung cancer. We put Mr S on morphine, among other things. A couple of hours later, he surveyed himself with disbelief. He had neither hoped nor conceived of the possibility that this kind of relief was possible, said Dr M R Rajagopal.

But when he returned, morphine stocks were out. Mr S told us with outward calm, I shall come again next Wednesday. I will bring a piece of rope with me. If the tablets are still not here, I am going to hang myself from that tree. He pointed to the window. I believed he meant what he said.

The commissions three-year inquiry found that nearly half of all deaths globally 25.5 million a year involve serious suffering for want of pain relief and palliative care. A further 35.5 million people live with chronic pain and distress. Of the 61 million total, 5.3 million are children. More than 80% of the suffering takes place in low and middle-income countries.

Jim Yong Kim, president of the World Bank, said things had to change. Failure of health systems in poor countries is a major reason that patients need palliative care in the first place. More than 90% of these child deaths are from avoidable causes. We can and will change both these dire situations.

Morphine is hard to obtain in some countries and virtually unobtainable in others. Mexico meets 36% of its need, China meets 16%, India 4% and Nigeria 0.2%. In some of the worlds poorest countries, such as Haiti, Afghanistan and many countries in Africa, oral morphine in palliative care is virtually non-existent.

Oral and injectable morphine is out of patent, but costs vary widely and it is cheaper in affluent countries like the USA than in poor countries. A second issue is opiophobia the fear that allowing the drugs to be used in hospitals will lead to addiction and crime in the community.

The world suffers a deplorable pain crisis: little to no access to morphine for tens of millions of adults and children in poor countries who live and die in horrendous and preventable pain, says Professor Felicia Knaul, co-chair of the commission from the University of Miami, calling it one of the worlds most striking injustices.

Knaul says she only realised that many people suffered without pain relief when she was working to improve access to cancer treatment in low-income countries. I was shocked. I had no idea. When people were showing me the data I thought it cant be in this world, she told the Guardian.

She had also experienced the need for morphine herself after a mastectomy for breast cancer. When I woke up I couldnt breathe because the pain was so bad. If they hadnt arrived with the morphine I dont know how I would have got through it. And as a young girl in Mexico, she had to watch her father suffer as he died without pain relief.

I dont think that we have cared enough about poor people who have pain, she said. It doesnt make them live any longer. It doesnt make them more productive. It is simply the human right of not suffering any more pain and we dont care about that for people who are poor.

The commission recommends that all countries put in place a relatively inexpensive package of effective palliative care for end of life conditions that cause suffering, including HIV, cancers, heart disease, injuries and dementia.

One of their most emphatic recommendations, says Knaul, is that immediate-release, off-patent, morphine that can cost just pennies should be made available in both oral and injectable formulations for any patient with medical need. The disparity and access abyss between the haves and have-nots is a medical, public health and moral injustice that can be effectively addressed by the commissions recommendations.

Read more: https://www.theguardian.com/science/2017/oct/12/more-than-25-million-people-dying-in-agony-without-morphine-every-year

Simple way to boost cancer survival rates: diet and exercise, studies say

Studies of colon and breast cancer patients link healthy habits to better outcomes amid slew of research on lifestyle and cancer

A healthy diet and exercise could reduce colon cancer patients chance of death and simply walking could improve survival rates for breast cancer survivors, studies presented at the worlds largest cancer conference have found.

A study of nearly 1,000 colon cancer patients found that those who exercised regularly, ate more fruits and vegetables and avoided refined grains and meats had a 42% lower chance of death after seven years.

Similarly, a study of more than 300 Australian breast cancer survivors who aimed to exercise for 180 minutes per week most by simply walking had far better rates of survival than those who were not part of an exercise program.

The studies were presented amidst a slew of research on the impact of a healthy lifestyle on cancer, presented at the American Society of Clinical Oncology (ASCO) in Chicago.

Most of what we know about the importance of exercise post-cancer comes from studying women with breast cancer, said Sandra Hayes, an epidemiologist studying cancer and exercise at Queensland University of Technology in Australia.

Studies conducted on the relationship between exercise and other types of cancer, she said, held up a general set of findings.

Engaging in some activity [or] exercise is better than none, and doing more is generally better than less, Hayes said.

Researchers acknowledged that studies on the effects of exercise and cancer recurrence remain epidemiological, and that causal links are yet to be established. Further, the mechanisms through which exercise may influence cancer survival remain unclear.

In one study, researchers at the University of California San Francisco and colleagues aimed to test whether American Cancer Society (ACS) nutrition and exercise guidelines for cancer survivors could impact survival among colon cancer patients.

In general, the guidelines recommend moderate exercise of 150 minutes per week, eating a diet rich in whole grains, fruits and vegetables, and keeping a healthy body weight. The ACS has detailed guidelines for nutritional and exercise standards for cancer survivors, addressing everything from exercise to eating recommendations forthose who have little appetite.

Researchers found that even colon cancer survivors who drank moderately while following other guidelines had a 42% lower chance of dying than those that did not.

I would recommend that patients build up to exercising for at least 150 minutes per week, said the senior author, Erin Van Blarigan, an epidemiologist at University of California San Francisco. Brisk walking is a great exercise for everyone. I would also recommend that patients aim to eat at least five servings of vegetables every day, not counting potatoes, and choose whole grains over refined grains.

Van Blarigan said she was surprised by the strong correlation between healthy diet, exercise and lowered mortality.

These recommendations can be applied within whatever diet type an individual prefers, she said. The key is finding foods that fit the recommendations that you enjoy, so you can continue this pattern of eating for the long term.

In a smaller study, Hayes and colleagues in Australia randomly assigned more than 300 breast cancer survivors to groups that received exercise counseling or to a control group.

All patients were six weeks out of surgery, and lived in both rural and urban settings. The exercise program lasted eight months. The goal was to exercise 180 minutes per week. Most of the participants, researchers said, chose simply to walk.

After a median follow-up of roughly eight years, researchers found 5.3% of the women who had received exercise counseling had died, versus 11.5% of those who had not received counseling. Similarly, 12.1% of women in the group that received exercise counseling had a recurrence of cancer, versus 17.7% of those who did not.

The researchers said an exercise program after treatment has clear potential to influence survival.

Read more: https://www.theguardian.com/science/2017/jun/04/breast-cancer-colon-survival-rates

Trial finds combination of pancreatic cancer drugs extends survival

Campaigners hail monumental leap forward in treatment of most lethal form of cancer, which kills 8,800 Britons each year

Cancer campaigners are hailing a monumental leap forward in pancreatic cancer treatment after a new drug trial significantly extended survival from what is the most lethal form of the disease.

The clinical trial found that 29% of patients given a combination of two chemotherapy drugs lived for at least five years compared with 16% who received the one chemotherapy drug that is still the NHSs standard treatment.

The results are important because they could lead to an improvement in the prospects for people who develop pancreatic cancer, which has the lowest survival rates among the 21 most common forms of the disease and kills 8,800 Britons a year. Only one in 100 people survive for 10 or more years after their diagnosis.

These results are a monumental leap forward in pancreatic cancer treatment. We believe this could herald a true step change in the treatment of this tough cancer, offering substantially more patients who have had surgery the chance to live for longer and, crucially, without significant added side-effects, said Leanne Reynolds, head of research at the charity Pancreatic Cancer UK.

About 10,000 people are diagnosed with pancreatic cancer each year in the UK. However, the apparent breakthrough may only benefit the 800 who have surgery. The cancer is too advanced in most of the other 9,200 cases for surgery to be worthwhile.

Four in five patients are only diagnosed when the cancer has reached an advanced stage, and in 46% of cases only after they have presented as an emergency at an A&E unit. Survival rates have barely improved for 40 years, in contrast to some other forms of the disease. It is the fifth most common cause of cancer death in the UK.

The ESPAC-4 (European study group for pancreatic cancer) trial involved 732 patients from 92 hospitals in England, Scotland, Wales, Germany, France and Sweden. Of those given both gemcitabine and capecitabine, 28.8% survived for at least five years, compared with just 16.3% who received only gemcitabine.

Pancreatic Cancer UK and the researchers behind the findings are now urging the NHS to replace gemcitabine with the combination as the standard treatment for the one in 12 sufferers of the disease who undergo a resection of their pancreas.

This is one of the biggest ever breakthroughs prolonging survival for pancreatic cancer patients, said Prof John Neoptolemos of Liverpool University, who lead the team of researchers.

When this combination becomes the new standard of care it will give many patients living with the disease valuable months and even years. The two drugs taken together extend median overall survival from 25 and a half months for those on gemcitabine alone to 28 months, according to the study, which has been published in the Lancet.

Cancer survival rates in England and Wales

The difference in short-term survival may seem modest, but improvement in long-term survival is substantial for this type of cancer, added Neoptolemos.

Meanwhile, separate research has also brought good news about lung cancer, which has the second worst survival rates among the commonest forms of cancer.

The number of people surviving for at least a year after diagnosis rose from 31% to 38% between 2010-2015, according to the NHSs latest audit of the quality of care patients receive. Experts in the disease welcomed the increase, which is mainly the result of earlier diagnosis.

Ian Woolhouse, the audits senior clinical lead, said it was very encouraging that one-year survival had improved in what is the UKs second most common form of cancer after breast cancer.

His team noted other progress too in how the NHS treats patients, including the fact that 60% of patients now receive some for of anti-cancer treatment. They analysed the records of 43,000 people diagnosed with lung cancer in 2015.

However, they voiced concern about the persistent wide and unacceptable variation in standards of care provided by NHS trusts and boards across England, Wales, Scotland and Guernsey. Only 57% of patients are seen by a specialist lung cancer nurse, for example, even though the target for that is 90%.

Dr Jesme Fox, medical director of the Roy Castle Lung Cancer Foundation, said: We are pleased to see this encouraging increase in patient survival. However, there is much still to do to ensure that lung cancer patients are diagnosed as early as possible and are able to access best practice treatment and care.

Read more: https://www.theguardian.com/science/2017/jan/25/pancreatic-cancer-drugs-trial-combination-extends-survival

Laser-activated drug a ‘leap forward’ for prostate cancer treatment

New therapy does not cause side-effects such as impotence and urinary incontinence, researchers say

A drug activated by laser light successfully destroys early prostate cancer while avoiding side-effects that commonly occur with surgery, trial results have shown.

The new technique, called vascular-targeted photodynamic therapy (VTP), involves injecting a light-sensitive drug into the bloodstream. The drug is then switched on by laser pulses fired through optical fibres inserted into the prostate.

Of 196 men who received the treatment, about half showed no signs of the disease two years later, compared with 13.5% of those given standard care.

Because VTP targets only prostate tumours, it does not cause the long-term problems of impotence and urinary incontinence often associated with radical surgery or radiotherapy.

Lead investigator Professor Mark Emberton, consultant urologist at University College London hospital, said: These results are excellent news for men with early localised prostate cancer, offering a treatment that can kill cancer without removing or destroying the prostate.

This is truly a huge leap forward for prostate cancer treatment, which has previously lagged decades behind other solid cancers such as breast cancer.

In 1975, almost everyone with breast cancer was given a radical mastectomy, but since then treatments have steady improved and we now rarely need to remove the whole breast.

In prostate cancer, we are still commonly removing or irradiating the whole prostate, so the success of this new tissue-preserving treatment is welcome news indeed.

Currently, men with low-risk localised prostate cancer are put under active surveillance, which means monitoring the disease but providing no treatment unless it becomes more severe.

In the trial consisting of 413 men, participants were randomly assigned either to VTP or active surveillance.

Only 6% of the VTP group later needed radical treatment, compared with 30% of active surveillance patients. VTP treatment also doubled the average time of cancer progression from 14 months to 28 months.

The trial, reported in the Lancet Oncology journal, was conducted across 47 treatment sites in 10 European countries, most of which were performing VTP for the first time.

Emberton said: The fact that the treatment was performed so successfully by non-specialist centres in various health systems is really remarkable.

New procedures are generally associated with a learning curve, but the lack of complications in the trial suggests that the treatment protocol is safe, efficient and relatively easy to scale up.

We would also expect the treatment to be far more precise if we repeated it today, as technology has come a long way since the study began in 2011.

We can now pinpoint prostate cancers using MRI (magnetic resonance imaging) scans and targeted biopsies, allowing a much more targeted approach to diagnosis and treatment.

This means we could accurately identify men who would benefit from VTP and deliver treatment more precisely to the tumour.

With such an approach, we should be able to achieve a significantly higher remission rate than in the trial and send nearly all low-risk localised prostate cancers into remission.

We also hope that VTP will be effective against other types of cancer. The treatment was developed for prostate cancer because of the urgent need for new therapies, but it should be translatable to other solid cancers including breast and liver cancer.

The drug used, WST11, is derived from bacteria at the bottom of the ocean. To survive with very little sunlight, the bugs have evolved to convert light into energy with high efficiency. This property was exploited to develop the drug, a compound that releases destructive tumour-busting free radical molecules when activated by laser light.

Gerald, a man aged in his 60s from Surrey, was one of the first patients to be treated with VTP under the care of Emberton.

He said: The treatment … changed my life. Im now cancer-free with no side-effects and dont have to worry about needing surgery in future. I feel so lucky to be in this position.

Ive met other men who had surgery – they had to stay in hospital for days whereas I could go home the next day, and one suffered from terrible incontinence which he found very distressing.

I had some minor side-effects for a few weeks after the operation, but Im back to normal now.

Each year, more than 46,000 men in the UK are diagnosed with prostate cancer and 11,000 die from the disease.

Read more: https://www.theguardian.com/society/2016/dec/20/prostate-cancer-treatment-laser-activated-drug-a-leap-forward

‘Angelina Jolie effect’ boosted genetic testing rates, study suggests

Actors call for women to seek testing for breast and ovarian cancer mutations raised screening rates but may not have reached those most at risk

Angelina Jolies revelation that she underwent a double mastectomy to reduce her chances of developing breast cancer boosted rates of genetic testing among women, but might have failed to reach those most at risk, new research suggests.

In a 2013 article for the New York Times, Jolie explained her decision to undergo a double mastectomy after finding that she had a mutation in a gene known as BRCA1 that greatly increased her risk of breast and ovarian cancers.


I am writing about it now because I hope that other women can benefit from my experience, she wrote. Cancer is still a word that strikes fear into peoples hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action. After surgery her risk of developing breast cancer in later life fell from 87% to 5%.

The actors decision to tell her story was welcomed by medical experts and campaigners worldwide. But did women heed Jolies call?

Writing in the British Medical Journal, Sunita Desai and Anupam Jena of Harvard Medical School describe how they sought to answer the question by scrutinising data on US health insurance claims from more than nine million women aged between 18 and 64 .

These revealed that in the 15 working days following Jolies article, daily rates of testing for harmful mutations in BRCA1 and BRCA2 genes rose by 64%, compared with the 15 working days before. After six months, average monthly testing rates were still 37% higher than in the four months before the articles publication.

But the study also reveals that while genetic testing rates increased, there was no change in average, overall mastectomy rates in the six months following the articles publication and showed a slight drop in mastectomy rates among those who had BRCA tests.

The fact that mastectomy rates dropped after Angelina Jolies editorial suggests that that denominator of women who started getting the BRCA test became less appropriate for the BRCA test because they had a lower pre-test probability of having the mutation in the first place, said Desai.

However, Douglas Easton, professor of genetic epidemiology at the University of Cambridge, noted that the study did not offer insights into the BRCA test results meaning it was not possible to say whether women taking the test received negative results, or whether they had tested positive, but decided not to undergo surgery.

But Jennifer Litton, associate professor in the department of breast medical oncology at the University of Texas, said the results reflected what had been seen in clinics.

The Jolie effect was real, and we did have many more breast cancer patients ask about the test, she said. As only a small proportion of breast cancer patients harbour an abnormal gene, those that met national guidelines for testing had already had testing, so it did not change that group with the highest risk of a positive test.

The research is not the first to explore the impact of Angelina Jolies declarations, although previous UK-based studies found that both testing among women at risk, and subsequent preventative surgery, increased.

A co-author of the UK-based research, Tony Howell, professor of medical oncology and director of scientific research at Prevent Breast Cancer, says the new US study looked at too short a period after publication of Jolies article to truly reflect its impact. It takes weeks or months to get through the testing process in proper centres, he said. Same applies to risk-reducing breast surgery. This takes one to three years to filter through to surgery if all the checks and counselling are performed properly.

Overall, says Howell, the 2013 article was valuable in raising awareness. Jolie did a terrific job, he said.

Read more: https://www.theguardian.com/science/2016/dec/14/angelina-jolie-effect-boosted-genetic-testing-rates-study-finds-breast-ovarian-cancer

‘Moonshot’ initiative to fight cancer urged to include survivors’ lives

Some advocates say research focus is promising but recommendations do not address survivorship, which affects things such as mental and financial health

Though it has been 18 years since a doctor first told Jennifer Stewart she had cancer and she can now call herself a survivor, she is excited about the White House moonshot panel to cure cancer and what it means for people who are just starting their journey through the disease.

Less than nine months after Barack Obama announced the plan, a panel of top cancer scientists and patient advocates on Wednesday presented a report on how the moonshot could destroy the disease.

For cancer survivors like Stewart, the panels 10 recommendations present a promising model. If I could spare anyone from going through even a portion of what I went through, I would in a heartbeat, said Stewart, who was diagnosed with acute myelogenous leukemia at age 20.

The Cancer Moonshot Blue Ribbon Panel initiatives, led by Vice-President Joe Biden, include organizing a clinical trial network for immunotherapy and creating national databases of patient and clinician information to profile cancer cases and model tumors. This information-sharing is meant to further research, but is also seen by survivors as having the potential to fill gaps in the isolating process of learning about, and coping with, a cancer diagnosis.

Ive relied on my community, the young adult cancer community, to find out about things they are talking about putting in the database, said Stewart, a volunteer with the not-for-profit Stupid Cancer.

She said some information, like how to be a part of clinical trials, is typically not known to people when they are first diagnosed. For people less connected to the cancer community or far from top research facilities, acquiring this information can be a slow process that the moonshot databases would address.

But some survivors worry they will be left behind in the plans for the biggest federal push against cancer since Richard Nixon declared a war on cancer in 1971. Moonshot aims to accomplish 10 years of cancer research in five years, so the panels report emphasizes science and research, not what happens to those who survive the disease.

If at the end of the line a vaccine comes out of this and we dont have to worry about this any more, well, wow, thats great, but youre still not educating me on what I should be doing, said Mailet Lopez, a breast cancer survivor and co-founder of the social network for cancer patients, survivors and supporters, I Had Cancer.

She is excited about moonshot, but had hoped the recommendations would do more to address survivorship, which affects things such as mental health, fertility and financial health for a lifetime. I want to know what Ive been doing or what Ive done or what I can do to prevent this, Lopez said.

There are approximately 15.5 million people in the US who are cancer survivors, according to the American Cancer Society. And there are expected to be 1.6m new cases nationwide this year.

Emily Giegerich, communications director at I Had Cancer, said these concerns about survivorship were echoed in the social network, which has more than 250,000 users worldwide. Even if all these 10 recommendations are met, there is still life after cancer and there are still so many things people dont talk about, she said, noting that most people with cancer are only patients for a short percentage of time.

One of two patient advocates on the 28-person Blue Ribbon Panel, David Arons, the National Brain Tumor Society CEO, said the highest and best use of moonshots time was to find things that are going to destroy cancer.

Thats why there was such a strong focus on science and on research and things that are going to accelerate drug development, and the development of new technologies which will help us understand better if a tumor exists, if a cancer exists, if a cancer is growing, whether we can detect it early, whether we can treat it early and whether we can save patients, Arons said.

He said tools like the national databases are meant to help researchers and clinicians understand patients better by giving them the opportunity to put their data in a national network and have improved access to clinical trials. Were trying to end cancer, were trying to make cancer all different types of cancer a chronic, manageable disease, Arons said.

To do this, of course, will require funding.

Obama asked for $1bn to fund moonshot and Biden secured a $264m increase in federal funding to the National Cancer Institute before moonshot was announced.

I hope it comes to fruition, said Stewart, who also said she hoped moonshot would not lose sight of the long-lasting effect cancer has on survivors.

I think we need to take what we [the cancer community] have, and a lot of it is out there already, and make sure that thats all incorporated into everything moonshot is doing because the more people that survive cancer the more important survivorship is going to be, and how people deal with that and the issues can only come up along the way are only going to become more prominent and more important.

Read more: https://www.theguardian.com/science/2016/sep/09/moonshot-cancer-fight-survivors-initiative

DNA database brings scientists closer to pinpointing genes for disease

Analysis of more than 60,000 peoples DNA will help scientists to determine whether genetic mutations seen in patients are in fact behind their disease

Scientists say they are closer to pinning down the genetic causes of inherited diseases ranging from muscular dystrophy to certain types of heart disease after analysing the DNA of more than 60,000 people.

Researchers have discovered more than 3,000 genes in which certain mutations are likely to play a role in disease, as well as more than 160 genetic mutations that have previously been linked to inherited conditions – but are in fact harmless.

The findings will help to pin down whether genetic mutations seen in a patient are likely to be behind their disease.

Researchers and clinicians need to be able to determine which DNA changes are important [in their patients], said Dr Jane Gibson from the University of Southampton, who was not involved in the study. Has a particular change been seen before in healthy individuals? This helps to prioritise the [genetic] changes and narrow down the likely cause of disease in their own patient.

The new research is based on regions of DNA that encode information needed to make proteins regions that account for just under 2% of the entire human genome.

Those protein coding regions contain the vast majority of the [genetic] variants that are known to cause severe rare diseases like muscular dystrophy, said Daniel MacArthur, senior author of the research from the Broad Institute of MIT and Harvard. So focusing on those regions really gives us a lot of bang for our buck in terms of understanding the genetic causes of severe diseases.

The research is the fruit of an international collaboration, dubbed Exac, which pulled together data from around the world to produce the largest ever catalogue of variations in protein-coding regions of DNA, boasting data from 60,706 individuals.

Among their findings, the scientists discovered almost 7.5million genetic variants in the database. More than half of those are seen only once in 60,000 people – thats an incredibly rare frequency, said MacArthur, adding that most of the mutations identified have never been seen before.

As well as highlighting the high degree of variation among humans, the finding has important implications. These extremely rare variants are the ones that are most likely to be involved in very severe diseases like cystic fibrosis or muscular dystrophy, he said.

The research also revealed that there are 3,230 genes which have fewer genetic variations that would inactivate the gene than expected, meaning that many of these genes are likely to be involved in essential processes in the cell. That, the scientists add, means that disruptive genetic mutations in these genes are likely to have adverse effects – although such impacts are at present unknown for more than 70% of these genes. We know of some of the genes in the list already where gene disruptions cause very severe childhood onset diseases, said MacArthur.

The team were also able to overturn a number of links previously made between particular genetic mutations and a host of disorders, finding more than 160 genetic variants that had erroneously been linked to inherited conditions.

Surprising findings like these allow us to get a better understanding of how the human genome works and how different changes might or might not affect our health, said Gibson.

While the Exac database has been freely available for use in clinical settings since late 2014, the new research, published in the journal Nature, marks the first analysis of the data.

By using the database to work out how common a patients genetic variant is, and comparing it to how common the patients disease is, researchers hope to be able to screen for disease-causing mutations.

If [a particular genetic variant occurs in] one in every 6,000 people, it cannot be a fully causal variant for a disease that [affects] one in 100,000, said MacArthur.

Ewan Birney, co-director of the European Bioinformatics Institute in Cambridge says the Exac database is extremely important. Previously there would be a sense that if you had breast cancer, and you had a rare mutation in [genes known as] BRCA1 or BRCA2, then perhaps that rare mutation was the reason you got breast cancer, he said. We can now say for many of those variants, it is rare but it is not so rare and so it probably doesnt cause breast cancer.

In a separate study by researchers from the Royal Brompton Hospital and the University of Oxford, scientists describe how they used the Exac database to whittle down the number of genetic mutations linked to cardiomyopathy – diseases of the heart muscle that affect one in 500 people in the UK and are the most common cause of sudden death in young people who are otherwise in good health.

Published in the journal Genetics in Medicine, the researchers reveal how they compared genetic information from almost 8,000 patients to genetic variations found in the Exac database. The team found 40 of the 48 genes previously linked to one form of cardiomyopathy – and a third of the genes linked to another form – were unlikely to cause the disease.

As well as increasing the accuracy of diagnosis, the findings are expected to be valuable for testing family members of those who have been diagnosed with an inherited disease. When a mutation is identified you can cascade it around the family and you can say to other family members you are also at risk, said Birney.

While the Exac database includes genetic information from individuals of many different ancestries, including Latino, African and East Asian, there are other populations, including those of Central Asian ancestry that are missing from the dataset.

For Europeans now we have this database that really helps to screen out what ends up being benign mutations, said Birney. We need that now for all populations.

Read more: https://www.theguardian.com/science/2016/aug/17/dna-database-brings-scientists-closer-to-pinpointing-genes-for-disease