kebaldwin
Wed, Jul-11-07, 10:42
The Cure That Can Kill: Radiotherapy for Breast Cancer Has Saved Millions of Lives But Has Also Lef T Some Women Suffering Terrible Physical Damage. Now the Victims Are Fighting Back ...
Daily Mail
07-11-07
JAN MILLINGTON'S right arm hangs useless and completely numb by her side. She often cuts herself without realising it. Recently, she broke her wrist but found out only after she spotted the massive bruising.
While there is no feeling in her arm, her right shoulder is agonisingly painful. The bone in the joint has been weakened and distorted.
'I have tried every sort of pain relief from injected anaesthetic to acupuncture but nothing really works,' says Jan, 67. 'I was even prescribed morphine at one point but I couldn't live with how drowsy it made me feel.'
Over the past 15 years, Jan's condition has deteriorated so that she can no longer drive. Daily life with the use of just one hand is far from easy. 'Even peeling vegetables presents an almost insurmountable problem,' she says. To add to her problems, damage to her oesophagus means she finds swallowing food difficult and painful. What makes her story so tragic is that Jan's injuries were caused by the very people who were trying to help her beat breast cancer.
Something went terribly wrong when she was undergoing radiotherapy either with the dosage or the administration of treatment. As a result, Jan is suffering from the irreversible effects of radiation damage.
She is just one of hundreds of former breast cancer patients treated in the late 1970s and early 1980s who have been similarly affected.
'It's been horrendous for all of us,' says Jan. 'Some women have had their limbs amputated because damage to the blood supply led to gangrene; others suffer from ballooned limbs caused by lymphoedema [water retention], revealed that the radiation damage or breathing problems where the radiation damaged their lungs.
'Some are now living in residential care homes, and all of our conditions will become progressively worse.' A few women went on to develop sarcomas cancers in connective tissues.
Others have died of associated problems such as respiratory disorders, blood clots, pulmonary embolisms and heart problems.
The tragic irony is that they were cured of their breast cancer, but suffered lingering deaths as a result of the treatment.
Their plight made the headlines earlier this year when a coroner found that 69-year-old Patricia Roper died as a result of delayed reaction to radiotherapy, 30 years after she was treated for breast cancer.
Patricia's nerves and blood supply had been damaged by radiotherapy, and last October her arm was amputated.
She died three weeks after the operation, when her wound haemorrhaged.
However, a post-mortem revealed that the radiation damage had also fused her internal organs, cutting off the blood supply and causing chunks of flesh to die off.
Radiation therapy is an integral part of the fight against cancer and has saved millions of lives.
Developed in the 1890s, it was already being used for the treatment of breast cancer more than 100 years ago.
During the treatment, highenergy radiation from X-rays, gamma rays, neutrons and other sources are used to bombard the tumour or the site from where the tumour has been removed, killing active cancer cells.
Radiation may come from a machine outside the body (external- beam radiation therapy), or from radioactive material placed in the body near the cancer site. It is given in conjunction with surgery, or with surgery and chemotherapy.
Healthy tissue in the vicinity of the cancer will inevitably be affected, and it is down to the skill and calculations of the radiologist, and the care of the radiographers who administer and target that treatment, to keep side-effects to the lowest possible level. THE damage occurs when the inflammation caused by the treatment triggers the growth of spiral-like fibres within the nerves and the blood supply around it.
These fibres grow and harden, eventually damaging the nerve and cutting off the blood supply a process which continues for the rest of the patient's life.
Damage varies with the cancer.
Any pelvic-based cancer for example, bowel, prostate or gynaecological often requires high doses of radiation, and this may lead to serious gastric side-effects and damage to reproductive or sexual organs.
From the earliest days of radiotherapy cancer treatment, radiologists knew that it had sideeffects, although it wasn't until many years later that these were properly documented. However, there was plenty of anecdotal evidence to cause concern, and by the 1970s radiologists had started to identify several ways of reducing the damage.
One was by avoiding high doses of radiotherapy in one treatment instead, using smaller doses over a longer period of time.
Today, computers are used to calculate the dosage, and new machines mean that the radiation is far less damaging to the live tissue. Nevertheless, although new technology has reduced the risk of radiotherapy damage, it cannot eradicate it altogether.
It is generally accepted that one to two per cent of all the thousands of patients undergoing radiotherapy are affected each year. And the numbers are likely to rise.
Dr Jane Maher, clinical oncologist and chief medical officer for Macmillan Cancer Support, says: 'The fight against cancer is always moving forward, and today doctors are willing to treat cancers now that they perhaps wouldn't have done a few years ago.
'But new treatments can often mean new problems and sideeffects, so I would not be surprised if the incidence of problems related to radiotherapy increased.' The fact is that even today although radiotherapy saves lives, it can also wreak terrible destruction.
Yet despite this knowledge, there is no official register of injuries caused by radiation. This means that currently there is no way of collating information, following up affected patients and, most importantly, picking up any other potential problems.
Without a registration and followup procedure, patients are often not referred to the people who are qualified to deal with the damage, such as neurologists and physiotherapists.
And early treatment can make a difference.
'Although there is no cure for radiation damage, physiotherapy can reduce the severity of the nerve damage,' says Karol Sikora, professor of cancer medicine and honorary consultant oncologist at Imperial College School of Medicine, Hammersmith Hospital.
'Properly-managed pain relief also helps.
'In addition, early treatment means patients can be spared much mental anguish' the sort of mental anguish Jan and fellow cancer patients have suffered for more than 25 years. Ironically, by the time Jan was treated in 1983, radiotherapy was considered to be relatively low-risk for breast cancer. AFTER surgeons removed a 2cm lump from her right breast, she underwent five weeks of radiotherapy.
Jan was told she needed 'a bit of radiotherapy' to catch any stray cancer cells; a kind of insurance.
She was not, she claims, warned about potential risks.
'I just accepted the treatment and went ahead,' she says. 'But within a few weeks, all three sites were incredibly sore and burnt.
'The skin looked brown and dead, it was agonising to touch, and my throat hurt when I swallowed. But still, I thought that if it saved my life and allowed my children then just 17 and 16 to have a mother, then it was worth it.
'I had no idea of the agonies to come. If I had, I would certainly have thought twice about that treatment,' says Jan, who now has three grandchildren.
She was told that she had every chance of a full recovery, and in 1985 was confident enough in her future to buy, along with her husband Bill, now 81, a small girls' prep school in Tunbridge Wells, Kent.
But in the summer of 1986, Jan started to suffer sporadic sharp pain and tingling in her right fingers, followed by stiffness in her right shoulder and neck classic first symptoms of radiotherapy damage. A year after the symptoms first appeared, Jan went back to her radiologist.
'He said I was worrying unnecessarily but agreed to a scan to put my mind at rest and check for cancer.' A week later, the radiologist called to say that although Jan didn't have cancer, she appeared to have some scarring from the radiotherapy which was pressing on nerves and causing the pain in her arm and neck.
'He said it was rare and I should heal in time,' she says. Instead, the buzzing sensation and pain in her arm became constant and her hand was beginning to lose strength.
In 1988, she went see her surgeon.
'He said he was terribly sorry but he felt that I might have serious radiation damage. I was devastated,' she says. Still, Jan thought she had been uniquely unlucky.
'Then, in 1991, I heard about a woman called Lady Audrey Ironside who'd taken my radiologist and hospital the Royal Marsden in London to court for damages following extensive radiation injuries, citing medical negligence. What's more, the news report stated that other women had been damaged as well.
'It was a huge moment for me. I was not alone, nor was I neurotic or mad.
When I confronted the radiologist, he told me his feelings had been dreadfully hurt by the court case because he felt that he was being held responsible for injuries that were purely a side-effect of the treatment which had saved lives. I sat there with my useless hand and stiff neck and was speechless.' Jan was just one of hundreds of women from across the country who wrote to Lady Ironside telling her about their ordeal (in other hospitals as well as the Royal Marsden).
'We decided to have a meeting,' recalls Jan. 'It was in the house of the actress Liz Gebhardt, who was severely affected with a floppy arm and pain. She passed away not long after that, at the age of just 51.
WHILE it was wonderful to know you were not alone, it was so sad to see all those damaged women. We decided to form a lobby group the Radiotherapy Action Group Exposure (RAGE) to fight for help and compensation.' Professor Sikora agrees there were 'undoubtedly mistakes' made in the administration of the radiotherapy to these women.
'I think it was probably a combination of things that just happened to line up, with disastrous consequences.
The hospitals where it happened had high workloads, so they were giving higher doses than normal so that the women didn't have to come in so often.' Another factor is the shape of the woman's breast.
'Today, the breast shape is part of the computerised calculation for where the radiotherapy is beamed. In those days, it was mostly done by human calculation and, as every breast is different, you can see how easy it would be to make a small misjudgement.' In order to get compensation, the women started a group action against several hospitals, but in 1999 this failed. Lacking meaningful records of the damage and without expert witnesses prepared to act for the group, a judge deemed the case not strong enough to go to court.
While this left many of the women devastated and facing large legal fees RAGE has continued to campaign vigorously for better treatment of patients with radiation damage. It is largely thanks to RAGE's efforts that vital changes have been made to radiotherapy treatment generally.
A report funded by the Department of Health into the issue after strenuous lobbying from RAGE led to a series of national guidelines being laid down in 1995 for the Royal College of Radiologists to follow, concerning administration and dosage.
Today, radiotherapy is used far less frequently in the treatment of breast cancer and not at all on lymph nodes.
If doctors suspect cancer has spread to the lymph nodes, they will first surgically remove them and check for cancer. If it is found, chemotherapy is offered as a follow-up treatment.
'Like all treatments, including surgery and chemotherapy, radiotherapy carries side-effects and all patients have a low risk of damage,' says Dr Michael Williams, the vicepresident of the Royal College of Radiologists. 'The important thing is information, and today guidelines state you should tell patients about all the risks, even if they are very rare.
'Twenty or 30 years ago we knew little about the damage radiotherapy could cause and doctors were more reluctant to tell patients about treatment risks.
'It probably isn't much comfort to the RAGE ladies, but we did learn a lot from what happened to them, and because of them, patient care has changed for the better.' Jan dismisses the suggestion that her injuries were due to a simple lack of knowledge.
'The medics' argument was that radiotherapy was not an exact science in those days, that they didn't know enough then to treat us as safely as they do today,' says Jan. 'But if that was the case, why weren't more of the 65,000 or so women who were treated in that period affected?' What the group now wants is practical help and support. 'Often, by the time people get to us they are desperate. As we get older, more ill and less able to fight for ourselves, we need help now.
'Some of our members have had to move into care homes; others need help to bathe, drive, or even to prepare a meal. But either they pay for it themselves or go without.
'We have lobbied MPs and ministers and the Royal College of Radiologists,' says Jan. 'Everyone is very sorry, but no one actually helps us.' Jane Maher is optimistic that after several years of lobbying, funding for a pilot scheme of care and assistance is on the cards. 'These things can move slowly,' she says. 'It can be frustrating and I understand that. But hopefully a pilot will lead to more funding for their care.' But the RAGE women feel they no longer have the luxury of time.
'The reality is that we are all in a bad state and getting worse,' says Jan.
'People sometimes say to me: "Well, at least you are alive." Without the radiotherapy I might have died, but on the other hand, thousands of women survived breast cancer but didn't have the dreadful injuries that we do.
'Many of us were young women when we had the treatment I was 42 and we have been ill for the best part of 25 years. It is hard not to feel bitter and angry about our wasted lives.
After all these years of fighting, we have yet to receive any practical help from anyone.
'We are truly yesterday's women.' A spokesperson for the Royal Marsden Hospital said: 'We were unable to find anyone to comment on this issue at this time.'
RAGE, 01892 557804.
http://www.lef.org/news/LefDailyNews.htm?NewsID=5585&Section=DISEASE
Daily Mail
07-11-07
JAN MILLINGTON'S right arm hangs useless and completely numb by her side. She often cuts herself without realising it. Recently, she broke her wrist but found out only after she spotted the massive bruising.
While there is no feeling in her arm, her right shoulder is agonisingly painful. The bone in the joint has been weakened and distorted.
'I have tried every sort of pain relief from injected anaesthetic to acupuncture but nothing really works,' says Jan, 67. 'I was even prescribed morphine at one point but I couldn't live with how drowsy it made me feel.'
Over the past 15 years, Jan's condition has deteriorated so that she can no longer drive. Daily life with the use of just one hand is far from easy. 'Even peeling vegetables presents an almost insurmountable problem,' she says. To add to her problems, damage to her oesophagus means she finds swallowing food difficult and painful. What makes her story so tragic is that Jan's injuries were caused by the very people who were trying to help her beat breast cancer.
Something went terribly wrong when she was undergoing radiotherapy either with the dosage or the administration of treatment. As a result, Jan is suffering from the irreversible effects of radiation damage.
She is just one of hundreds of former breast cancer patients treated in the late 1970s and early 1980s who have been similarly affected.
'It's been horrendous for all of us,' says Jan. 'Some women have had their limbs amputated because damage to the blood supply led to gangrene; others suffer from ballooned limbs caused by lymphoedema [water retention], revealed that the radiation damage or breathing problems where the radiation damaged their lungs.
'Some are now living in residential care homes, and all of our conditions will become progressively worse.' A few women went on to develop sarcomas cancers in connective tissues.
Others have died of associated problems such as respiratory disorders, blood clots, pulmonary embolisms and heart problems.
The tragic irony is that they were cured of their breast cancer, but suffered lingering deaths as a result of the treatment.
Their plight made the headlines earlier this year when a coroner found that 69-year-old Patricia Roper died as a result of delayed reaction to radiotherapy, 30 years after she was treated for breast cancer.
Patricia's nerves and blood supply had been damaged by radiotherapy, and last October her arm was amputated.
She died three weeks after the operation, when her wound haemorrhaged.
However, a post-mortem revealed that the radiation damage had also fused her internal organs, cutting off the blood supply and causing chunks of flesh to die off.
Radiation therapy is an integral part of the fight against cancer and has saved millions of lives.
Developed in the 1890s, it was already being used for the treatment of breast cancer more than 100 years ago.
During the treatment, highenergy radiation from X-rays, gamma rays, neutrons and other sources are used to bombard the tumour or the site from where the tumour has been removed, killing active cancer cells.
Radiation may come from a machine outside the body (external- beam radiation therapy), or from radioactive material placed in the body near the cancer site. It is given in conjunction with surgery, or with surgery and chemotherapy.
Healthy tissue in the vicinity of the cancer will inevitably be affected, and it is down to the skill and calculations of the radiologist, and the care of the radiographers who administer and target that treatment, to keep side-effects to the lowest possible level. THE damage occurs when the inflammation caused by the treatment triggers the growth of spiral-like fibres within the nerves and the blood supply around it.
These fibres grow and harden, eventually damaging the nerve and cutting off the blood supply a process which continues for the rest of the patient's life.
Damage varies with the cancer.
Any pelvic-based cancer for example, bowel, prostate or gynaecological often requires high doses of radiation, and this may lead to serious gastric side-effects and damage to reproductive or sexual organs.
From the earliest days of radiotherapy cancer treatment, radiologists knew that it had sideeffects, although it wasn't until many years later that these were properly documented. However, there was plenty of anecdotal evidence to cause concern, and by the 1970s radiologists had started to identify several ways of reducing the damage.
One was by avoiding high doses of radiotherapy in one treatment instead, using smaller doses over a longer period of time.
Today, computers are used to calculate the dosage, and new machines mean that the radiation is far less damaging to the live tissue. Nevertheless, although new technology has reduced the risk of radiotherapy damage, it cannot eradicate it altogether.
It is generally accepted that one to two per cent of all the thousands of patients undergoing radiotherapy are affected each year. And the numbers are likely to rise.
Dr Jane Maher, clinical oncologist and chief medical officer for Macmillan Cancer Support, says: 'The fight against cancer is always moving forward, and today doctors are willing to treat cancers now that they perhaps wouldn't have done a few years ago.
'But new treatments can often mean new problems and sideeffects, so I would not be surprised if the incidence of problems related to radiotherapy increased.' The fact is that even today although radiotherapy saves lives, it can also wreak terrible destruction.
Yet despite this knowledge, there is no official register of injuries caused by radiation. This means that currently there is no way of collating information, following up affected patients and, most importantly, picking up any other potential problems.
Without a registration and followup procedure, patients are often not referred to the people who are qualified to deal with the damage, such as neurologists and physiotherapists.
And early treatment can make a difference.
'Although there is no cure for radiation damage, physiotherapy can reduce the severity of the nerve damage,' says Karol Sikora, professor of cancer medicine and honorary consultant oncologist at Imperial College School of Medicine, Hammersmith Hospital.
'Properly-managed pain relief also helps.
'In addition, early treatment means patients can be spared much mental anguish' the sort of mental anguish Jan and fellow cancer patients have suffered for more than 25 years. Ironically, by the time Jan was treated in 1983, radiotherapy was considered to be relatively low-risk for breast cancer. AFTER surgeons removed a 2cm lump from her right breast, she underwent five weeks of radiotherapy.
Jan was told she needed 'a bit of radiotherapy' to catch any stray cancer cells; a kind of insurance.
She was not, she claims, warned about potential risks.
'I just accepted the treatment and went ahead,' she says. 'But within a few weeks, all three sites were incredibly sore and burnt.
'The skin looked brown and dead, it was agonising to touch, and my throat hurt when I swallowed. But still, I thought that if it saved my life and allowed my children then just 17 and 16 to have a mother, then it was worth it.
'I had no idea of the agonies to come. If I had, I would certainly have thought twice about that treatment,' says Jan, who now has three grandchildren.
She was told that she had every chance of a full recovery, and in 1985 was confident enough in her future to buy, along with her husband Bill, now 81, a small girls' prep school in Tunbridge Wells, Kent.
But in the summer of 1986, Jan started to suffer sporadic sharp pain and tingling in her right fingers, followed by stiffness in her right shoulder and neck classic first symptoms of radiotherapy damage. A year after the symptoms first appeared, Jan went back to her radiologist.
'He said I was worrying unnecessarily but agreed to a scan to put my mind at rest and check for cancer.' A week later, the radiologist called to say that although Jan didn't have cancer, she appeared to have some scarring from the radiotherapy which was pressing on nerves and causing the pain in her arm and neck.
'He said it was rare and I should heal in time,' she says. Instead, the buzzing sensation and pain in her arm became constant and her hand was beginning to lose strength.
In 1988, she went see her surgeon.
'He said he was terribly sorry but he felt that I might have serious radiation damage. I was devastated,' she says. Still, Jan thought she had been uniquely unlucky.
'Then, in 1991, I heard about a woman called Lady Audrey Ironside who'd taken my radiologist and hospital the Royal Marsden in London to court for damages following extensive radiation injuries, citing medical negligence. What's more, the news report stated that other women had been damaged as well.
'It was a huge moment for me. I was not alone, nor was I neurotic or mad.
When I confronted the radiologist, he told me his feelings had been dreadfully hurt by the court case because he felt that he was being held responsible for injuries that were purely a side-effect of the treatment which had saved lives. I sat there with my useless hand and stiff neck and was speechless.' Jan was just one of hundreds of women from across the country who wrote to Lady Ironside telling her about their ordeal (in other hospitals as well as the Royal Marsden).
'We decided to have a meeting,' recalls Jan. 'It was in the house of the actress Liz Gebhardt, who was severely affected with a floppy arm and pain. She passed away not long after that, at the age of just 51.
WHILE it was wonderful to know you were not alone, it was so sad to see all those damaged women. We decided to form a lobby group the Radiotherapy Action Group Exposure (RAGE) to fight for help and compensation.' Professor Sikora agrees there were 'undoubtedly mistakes' made in the administration of the radiotherapy to these women.
'I think it was probably a combination of things that just happened to line up, with disastrous consequences.
The hospitals where it happened had high workloads, so they were giving higher doses than normal so that the women didn't have to come in so often.' Another factor is the shape of the woman's breast.
'Today, the breast shape is part of the computerised calculation for where the radiotherapy is beamed. In those days, it was mostly done by human calculation and, as every breast is different, you can see how easy it would be to make a small misjudgement.' In order to get compensation, the women started a group action against several hospitals, but in 1999 this failed. Lacking meaningful records of the damage and without expert witnesses prepared to act for the group, a judge deemed the case not strong enough to go to court.
While this left many of the women devastated and facing large legal fees RAGE has continued to campaign vigorously for better treatment of patients with radiation damage. It is largely thanks to RAGE's efforts that vital changes have been made to radiotherapy treatment generally.
A report funded by the Department of Health into the issue after strenuous lobbying from RAGE led to a series of national guidelines being laid down in 1995 for the Royal College of Radiologists to follow, concerning administration and dosage.
Today, radiotherapy is used far less frequently in the treatment of breast cancer and not at all on lymph nodes.
If doctors suspect cancer has spread to the lymph nodes, they will first surgically remove them and check for cancer. If it is found, chemotherapy is offered as a follow-up treatment.
'Like all treatments, including surgery and chemotherapy, radiotherapy carries side-effects and all patients have a low risk of damage,' says Dr Michael Williams, the vicepresident of the Royal College of Radiologists. 'The important thing is information, and today guidelines state you should tell patients about all the risks, even if they are very rare.
'Twenty or 30 years ago we knew little about the damage radiotherapy could cause and doctors were more reluctant to tell patients about treatment risks.
'It probably isn't much comfort to the RAGE ladies, but we did learn a lot from what happened to them, and because of them, patient care has changed for the better.' Jan dismisses the suggestion that her injuries were due to a simple lack of knowledge.
'The medics' argument was that radiotherapy was not an exact science in those days, that they didn't know enough then to treat us as safely as they do today,' says Jan. 'But if that was the case, why weren't more of the 65,000 or so women who were treated in that period affected?' What the group now wants is practical help and support. 'Often, by the time people get to us they are desperate. As we get older, more ill and less able to fight for ourselves, we need help now.
'Some of our members have had to move into care homes; others need help to bathe, drive, or even to prepare a meal. But either they pay for it themselves or go without.
'We have lobbied MPs and ministers and the Royal College of Radiologists,' says Jan. 'Everyone is very sorry, but no one actually helps us.' Jane Maher is optimistic that after several years of lobbying, funding for a pilot scheme of care and assistance is on the cards. 'These things can move slowly,' she says. 'It can be frustrating and I understand that. But hopefully a pilot will lead to more funding for their care.' But the RAGE women feel they no longer have the luxury of time.
'The reality is that we are all in a bad state and getting worse,' says Jan.
'People sometimes say to me: "Well, at least you are alive." Without the radiotherapy I might have died, but on the other hand, thousands of women survived breast cancer but didn't have the dreadful injuries that we do.
'Many of us were young women when we had the treatment I was 42 and we have been ill for the best part of 25 years. It is hard not to feel bitter and angry about our wasted lives.
After all these years of fighting, we have yet to receive any practical help from anyone.
'We are truly yesterday's women.' A spokesperson for the Royal Marsden Hospital said: 'We were unable to find anyone to comment on this issue at this time.'
RAGE, 01892 557804.
http://www.lef.org/news/LefDailyNews.htm?NewsID=5585&Section=DISEASE