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Showing posts with label teenagers. Show all posts
Showing posts with label teenagers. Show all posts

Monday, September 28, 2009

The Experience and Impact of Teenage Cancer Diagnosis Reveals Major Struggle

New research provides unique insight into what it is like for teenagers and young people to go through the process of obtaining a cancer diagnosis, revealing stories of prolonged suffering, acute distress and intense frustration for some over their symptoms not being taken seriously.

The study, presented by British researchers at Europe’s largest cancer congress, ECCO 15 – ESMO 34, the joint 15th European CanCer Organisation (ECCO) and 34th European Society for Medical Oncology (ESMO) Multidisciplinary Congress, September 20 – 24 in Berlin, Germany, is the first to have asked young people with cancer about their experiences from the time of first symptoms to diagnosis and provides lessons for catching the disease earlier and improving the care and experience of patients in this age group, about whom little is known.

Cancer is rare in teenagers and young people, with those aged between 15 and 24 years accounting for less than two percent of all cancer cases worldwide. But the rates are twice as high as they are in children and the disease is the most frequent cause of death in this age group after accidents. The long-term outcome for some tumor types is thought to be relatively poor compared with that for children and adults and delay in diagnosis is thought to be one of the key factors in this. The problem of diagnostic delay is widely acknowledged but is perhaps the least understood aspect of the young person’s cancer journey.

“While being diagnosed with a potentially life-threatening disease is a distressing experience for any patient, a cancer diagnosis, and the process leading up to it, can have a particularly poignant impact on teenagers because that stage of development already presents significant challenges in developing independence, identity and in coping with the world. Research in this area has been limited and better understanding of the complexities of their experience in the pre-diagnostic period is crucial if we are to provide the most comprehensive and sensitive care and improve their outcomes,” said one of the study’s researchers, Ms Susie Pearce, a health service researcher for young people with cancer at University College Hospital in London.

The researchers conducted narrative interviews with 24 young people aged between 16 and 24, two to four months after they had been diagnosed with solid tumors in one of four major centers in England. The medical notes of each participant were also analyzed in the study.

While the individual experiences varied in terms of how their symptoms evolved and were responded to, several common themes emerged. Key findings included a pattern of young voices not being heard, delays in diagnosis and a misconception among young people and society as a whole that young people don’t get cancer.

“While symptoms in some young people were promptly recognized by GPs and referred to specialists quickly, other patients recounted tales of protracted periods of suffering, with rationalization of their own symptoms or numerous disappointing visits to doctors and hospitals before the cancer was diagnosed,” said Pearce, adding that the time period between first symptoms and diagnosis ranged from eight weeks to 11 years.

Examples of symptoms being missed by general practitioners or accident and emergency doctors included being told it is normal to be tired, that symptoms are due to menstrual problems, fluid on the knee, irritable bowel syndrome, excess weight or lack of exercise.

“One consistent thread through these stories is young people’s perception that they were not being listened to and that cancer was being ruled out on age alone,” explained Pearce. “For instance, one eventually thought she was going mad after three months of headaches and 12 visits to the GP and A&E. Finally, after breaking down at the GP’s surgery, she was referred to the specialist and was later diagnosed with neuroblastoma. It seemed that extreme levels of worry and distress had to be reached before the right course of action was taken.”

In another case, a 22-year-old young woman who was diagnosed with colon cancer that had spread to the liver recounted a frustrating battle to be taken seriously after nine or ten years of suspicious symptoms such as food aversion, abdominal pain, frequent diarrhea and rectal bleeding from the age of 14 and two separate diagnoses of familial adenomatous polyposis, or FAP, a hereditary syndrome that carries a very high risk of colon cancer.

“Basically because I grew up with the symptoms no-one went ding din ding… red light warning, we need to do something about this,” she told the researchers. “I said ‘look, this is ridiculous. I am passing blood a lot, diarrhoea, tummy ache. I want to get it sorted because it’s ruining, not ruining but it’s taking over my life’ …They look at you and they say you are too young for this. If you are old, they will do something about it.”

Pearce noted: “She felt quite strongly that if she had been 40 or 50 her symptoms would have been picked up on at a very early stage and she would have been fine, but lots of cues were missed because nobody was thinking that she could have colon cancer.” Sadly, after her participation in the study, this young woman died.

In another example, a 23-year-old young woman who was diagnosed with ovarian cancer 10 months after her first symptoms said: “I wish they had just listened to me in the beginning. I’d like them more aware so you can’t just be shoved away out the door. It’s your life … it’s your whole world they are talking about and they are not taking it seriously.”

The researchers found that the reaction of others, particularly parents, was important in determining how long the patients were willing to put up with symptoms and how assertive they were at pushing for an answer to their concerns.

“There seemed to be a trigger point at which further help was sought. That threshold came when normal physical, social and emotional functioning became impossible and the symptoms could no longer be dismissed as normal,” Ms Pearce said. “Prompting, confirmation and support from others was crucial in the acknowledgment of threat and seriousness of the need for action.”

The sense of relief once they had arrived in specialist care was striking. They felt they were in safe hands, with experts whom they now had confidence in, the study found. However, some said their struggle to get to that point prompted them to lose trust in their GP or the hospital Accident & Emergency system and that they would be reluctant to seek the help of those professionals again.

“The stories related here are, sadly, far from unique. Doctors should be making urgent referrals when children or young people come to see them several times with the same problem and persistent parental anxiety should be sufficient reason for referral,” Pearce said, adding that the study recommends research into interventions such as education in schools and universities and better education of health professionals, including school nurses, university health centers and general practitioners so that classic signs are investigated properly and promptly.

The 23-year-old ovarian cancer patient’s advice to young people was: “Listen to your intuition and be strong. If you think something is wrong just keep pushing.”

The study was funded by CLIC Sargent, the UK-based children and young people’s cancer charity.

For more information:

  • Abstract no: 4170. Experiences of Care proffered papers session, Tuesday 09.00 hrs CEST (Hall 10)

Also read these PubMed abstracts:

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Saturday, September 26, 2009

Combined Program of Vaccination and Testing for the Human Papilloma Virus Could Eradicate Cervical Cancer

Cervical neoplasia is usually an asymptomatic squamous cell carcinoma caused by human papilloma virus infection (HPV); less often, it is an adenocarcinoma. The recognition that human papilloma virus (HPV) is a cause of cervical cancer has opened new opportunities for the prevention of the disease. Primary prevention is now possible via immunization with highly efficacious HPV vaccines and secondary prevention has gained impetus with the advent of sensitive HPV DNA testing to improve traditional Pap cytology screening programs.

As a result, cervical cancer could be eradicated within the next 50 years. However, according to a cervical cancer screening expert, this can only happen if governments implement national screening programs based on detection of the human papilloma virus (HPV), which causes the disease, together with vaccination programs against the virus.

Professor Jack Cuzick told Europe’s largest cancer congress, ECCO 15 – ESMO 34, (the joint multidisciplinary 15th congress of the European CanCer Organisation and the 34th congress of the European Society for Medical Oncology), meeting in Berlin, Germany (September 20 – 24, 2009) that while the current HPV vaccines protect against two cancer-causing strains of the HPV virus, soon there would be vaccines available that protect against nine types. If vaccination were to be combined with HPV screening (which is much more sensitive than the currently used Pap smear test), then eventually the cancer would disappear in those countries that had successfully implemented national programs. However, this would require political will and effort at both national and European level.

“It’s important to say up front that the HPV is responsible for all cervix cancer,” Cuzick said. “If you can eradicate the virus, the cancer will not appear. So the current vaccine holds the promise of eradicating about 70-75% of cervical cancers (caused by HPV types 16 and 18), and there appears to be some additional cross protection amongst types that are closely related to 16 or 18, in particular 31, 45 and a little bit of 33. There are new vaccines being planned that will vaccinate against nine types. If they are successful, there should be no need to screen women that have been vaccinated at all. That’s the long-term future: vaccination and no screening. After about 50 years, we could see cervical cancer disappearing.”

As the current HPV vaccine only protects against two of the cancer-causing types, vaccinated women will still require screening for the rest of their lives.

“Women vaccinated above the age of about 16 will need to be regularly screened for the rest of their life, because the vaccine is not effective in women who have already been exposed to the virus. Even for girls vaccinated before this age with the current vaccine, there will be a need for some screening to protect from cancers caused by HPV types not in the vaccine, so screening is here to stay for the foreseeable future. However, we need to change to screening for HPV rather than the Pap smear test, and then it will be possible for the tests to be conducted at longer intervals,” said Prof Cuzick, who is the John Snow Professor of Epidemiology and head of department at the Cancer Research UK Centre for Epidemiology, Mathematics and Statistics, Wolfson Institute of Preventive Medicine (London, UK).

The Pap test uses cytology to detect pre-cancerous changes to cells; it relies on subjective assessments by people examining the cells in the smear with a microscope and so is open to human error. Prof Cuzick believes such errors will increase as the proportions of smears with affected cells decline due to increasing numbers of women having been vaccinated. In contrast, the HPV test is almost completely automated, is designed to detect the virus in the smear rather than relying on visual examination, and so is much less likely to be affected by human error.

Prof Cuzick said that countries should be switching to the HPV screening test now. “There’s overwhelming evidence that HPV screening is more effective than the Pap smear test, which misses about a third to a half of all high grade lesions. There are now several available commercial HPV tests and most of these tests show a sensitivity (the proportion of true positives correctly identified) in the order of 95% for high grade lesions, whereas cytology is somewhere between 50-70%. So it would really streamline the service because you could test less frequently, and it’s also been shown that the protection lasts longer so that screening every five to seven years is probably appropriate.”

However, he warned that the European Union and national governments should take the initiative in discussions on implementing screening and vaccination programs, rather than leaving it to pharmaceutical companies to lead the debate.

“The European Commission and Parliament, together with national governments, could be doing more to promote HPV testing. One of the most useful things the EU could do would be to provide a forum for the dissemination of knowledge about the role of HPV both to doctors and to the general public. It could sponsor a major symposium to discuss HPV testing, vaccination and the best strategies for implementing programs in member countries."

“There’s been a lot of concern, particularly with the vaccine, that dissemination of information about HPV has come mainly from the drug companies, and people are, not surprisingly, a little sceptical of pharmaceutical-based education programs. So if the EU was to take this up without pharmaceutical support, I think it would be very appropriate and it would provide a forum that would be extremely legitimate.”

Although current HPV tests are more expensive than cytology tests, Prof Cuzick said the price would go down as the volume of tests increased. In addition, the fact that it’s more accurate and women could be screened at longer intervals meant that switching to HPV testing could save governments money in the long term.

“For younger women we think HPV testing should happen every five years starting at age 25-30; by the time they’re 50, if they’ve been negative, they could probably be screened every eight years. So there’s a lot to be gained, both in terms of better protection and less frequent screening, which will save time and money. If women can go less often and get more protection it makes a lot of sense.”

For more information:

Also read these Pubmed Abstracts

Information for your patients:

Images courtesy American Society of Clinical oncology (ASCO).

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