Child with brain tumour taken from UK hospital by JW parents

by Fe2O3Girl 67 Replies latest jw friends

  • cofty
    cofty

    I suspect there is another side to this story.

    The dad does sound like he wants the best for his son but it appears he was objecting to adjunctive chemo/radio therapy.

    I don't know about the "proton beam" therapy the dad would prefer but I think the key to understanding the issue lies there.

    There was a woman refused chemo/radio for her son who had a brain tumour last year. She had read all the anti-chemo bullshit on the internet and wanted "alternative" medicine for him instead. He was made a ward of court, received the chemo and is doing well.

    Good doctors will show a lot of patience to explain the options and pros and cons to a patient or parent but in the end the doctor has a duty of care for the child. I don't know if the doctors were arrogant or not. Perhaps their patience ran out.

  • steve2
    steve2

    This does not appear related at all to the organization's anti-blood policy.

    It is driven primarily by the boy's father (the mother is in the background - likely complying with the head of the household).

    I note with interest the heavy emphasis in the man's spiel on youtube on medical matters and only passing reference to "prayer" and "God" - most likely because the father appears intent on generating social support and funding for his decision to remove the son from care.

    Regardless of whether this man felt heard or not by the medical professionals, the act of unilaterally removing his son from the hospital is foolhardy. He would not be the first parent to allow the strength of feelings and convicions to overrule common sense about what is needed to ensure recovery.

    The father's youtube video is played out entirely in front of his sick son. There just seems an incredible gulf between his intent to have the best for his son and the way he behaves. This may end up being a tragic embarrassment for the organization because of the "loose cannon" feel about this man.

  • snare&racket
    snare&racket

    In the UK treatment goes through strict regulating bodies. Treatments have to be weighed up against issues such as side effects and costs. For example, with expensive treatments, reducing a risk of serious side effects by a small amount and reducing access to the number of patients treated by a large amount is a difficult desicion and is made using equations for the most ethical and efficient desicion for the whole country.

    Proton therapy sounds great, it is a focused beam of radiation. with reduced spread to nearby tissue. Sounds great? The problem is it is expensive. This has several drawbacks. One, getting acces to it. Two, with few people using it, the research into long term negative effects and benefits will be reduced. However, even a brief glance highlights issues with secondary cancers due to the treatment when used in children.

    So what does the research say. I literally took a quick look at JUST the latest research and the top few results included research that was relevant. Hopefully this will give an appreciation of the specialists potential point of view.

    Intensity-modulated radiation therapy, protons, and the risk of second cancers

    • Eric J. Hall D.Phil., D.Sc.

    International Journal of Radiation Oncology*Biology*Physics

    1 May 2006, Vol.65(1):1–7, doi:10.1016/j.ijrobp.2006.01.027

    "Intensity-modulated radiation therapy (IMRT) allows dose to be concentrated in the tumor volume while sparing normal tissues. However, the downside to IMRT is the potential to increase the number of radiation-induced second cancers. The reasons for this potential are more monitor units and, therefore, a larger total-body dose because of leakage radiation and, because IMRT involves more fields, a bigger volume of normal tissue is exposed to lower radiation doses. Intensity-modulated radiation therapy may double the incidence of solid cancers in long-term survivors. This outcome may be acceptable in older patients if balanced by an improvement in local tumor control and reduced acute toxicity. On the other hand, the incidence of second cancers is much higher in children, so that doubling it may not be acceptable. IMRT represents a special case for children for three reasons. First, children are more sensitive to radiation-induced cancer than are adults. Second, radiation scattered from the treatment volume is more important in the small body of the child. Third, the question of genetic susceptibility arises because many childhood cancers involve a germline mutation. The levels of leakage radiation in current Linacs are not inevitable. Leakage can be reduced but at substantial cost. An alternative strategy is to replace X-rays with protons. However, this change is only an advantage if the proton machine employs a pencil scanning beam. Many proton facilities use passive modulation to produce a field of sufficient size, but the use of a scattering foil produces neutrons, which results in an effective dose to the patient higher than that characteristic of IMRT. The benefit of protons is only achieved if a scanning beam is used in which the doses are 10 times lower than with IMRT."

    and a second paper....

    Risk of Developing Second Cancer From Neutron Dose in Proton Therapy as Function of Field Characteristics, Organ, and Patient Age

    • Christina Zacharatou Jarlskog Ph.D.
    • Harald Paganetti Ph.D.

    International Journal of Radiation Oncology*Biology*Physics

    1 September 2008, Vol.72(1):228–235, doi:10.1016/j.ijrobp.2008.04.069

    "Purpose

    To estimate the risk of a second malignancy after treatment of a primary brain cancer using passive scattered proton beam therapy. The focus was on the cancer risk caused by neutrons outside the treatment volume and the dependency on the patient's age.

    Methods and Materials

    Organ-specific neutron-equivalent doses previously calculated for eight different proton therapy brain fields were considered. Organ-specific models were applied to assess the risk of developing solid cancers and leukemia.

    Results

    The main contributors (>80%) to the neutron-induced risk are neutrons generated in the treatment head. Treatment volume can influence the risk by up to a factor of ∼2. Young patients are subject to significantly greater risks than are adult patients because of the geometric differences and age dependency of the risk models. Breast cancer should be the main concern for females. For males, the risks of lung cancer, leukemia, and thyroid cancer were significant for pediatric patients. In contrast, leukemia was the leading risk for an adult. Most lifetime risks were <1% (70-Gy treatment). The only exceptions were breast, thyroid, and lung cancer for females. For female thyroid cancer, the treatment risk can exceed the baseline risk.

    Conclusion

    The risk of developing a second malignancy from neutrons from proton beam therapy of a brain lesion is small (i.e., presumably outweighed by the therapeutic benefit) but not negligible (i.e., potentially greater than the baseline risk). The patient's age at treatment plays a major role."

    I hope this helps people appercaite that the treatments used and suggested have to be evidence based and specialists with over 20yrs training, usually really have a good appreciation of the best therapy and treatments. When doctors kids get sick in the uk, they end up in the same hospitals, with the same treatments. It isn't like the USA where you can go to another insurance company and get a better treatment. We offer the same for everyone and we make those choices based on evidence. Our protocols and guidelines come from NICE.

    https://www.nice.org.uk

    Very sad situation for the family. Difficult situation for all involved, but I must admit I was very concerned for the young boy when they decided to take him out of significant hospital care and even out of the country. Hopefully it will end well for all involved.

    Hope you are all well here x

  • snare&racket
    snare&racket

    Just to be clear, I am not saying it is not a great or even the best therapy available. There just isn't much research yet it appears. Ethically, doctors can only work with research and evidence in making desicions and there are risks with all treatments, even if the numbers are not yet quantified.

    Again, the situation is not a pleasant one for any involved, it would be very easy to judge from the outside, but I feel personally this would be presumpteous and (in the literal sense) ignorant of us to do so. Whether we make judgments about the family or the doctors involved, we don't... and hopefully will never, have the fullest appreciations of the desicions they have made.

    I do believe it was unwise to transport a very sick child without medical support, but I won't judge their motives or presume their state of mind at the time. I can't imagine what they are feeling.

  • Band on the Run
    Band on the Run

    Snare & Racket,

    May I ask a question? People with cancer have told me that chemotherapy causes cancers. All it does is postpone when you die. So many people I respect say chemo is worse than dying. Radiation stops cancer. I am a child of the Bay of Pigs and Cuban Missle Crisis. Radiation causes cancer. I realize ths in't the place for a long presentation. Also, I know different chemos have different degrees of distress.

  • Mikado
    Mikado

    Band on the run, chemo does not cause cancer, it simply attempts to kill off rapidly dividing cells, which is why people hair, tongue and often stomach lining gets involved.

    sadly desperate people tend to grasp on to false strands of hope peddled by those unscrupulous sellers of woo....

  • snare&racket
    snare&racket

    Radiation damages the dna in a cell, which kills the cell. This is useful for killing cancer cells.

    Cancer is caused by many things including DNA mutations which can take place when cells are exposed to radiation.

    Radiotherapy is used because research shows that on terms of the numbers, it does more good for more people (with certain cancers) than harm.

    Obviously, chemotherapy and radiotherapy saves lives and kills cancer, that is why we use it. But there are always risks of side effects including mutations from the radiation. If by terrible luck, the mutations scramble the dna code so that the cell starts replicating uncontrolably..... a mass forms, i.e. a tumor, i.e. cancer.

    For a perspective, radiotherapy tends to be used to reduce the size of tumors, usually to help in complex surgery and chemotherapy (killing cells with toxins) is then used to kill the cancer cells....if they have specific receptors to the toxins we have developed.

    It is important to note we have only had the scientific method for around 150 -200 years and only had the aid of computers for a couple of decades. We have learned and developed much in a very quick, recent time period. Yes we have much to learn but we also can see that we have made huge advances in prolonging life and increasing quality of life. Chemo and radiotherapy use is a tough desicion as healthy cells die too so the patient really suffers. It is all a difficult balance and the doctors make all the desicions based on protocols. Tumour type, location, spread, lymph involvment along with the patients health status all add up to a treatment specific to their needs or in some cases a desicion to not offer treatment. These proticols/guidelines are based on research and change all the time based on new evidence.

    snare

    Just to highlight the reality of radiation and risk BOTM, mammograms are a good example....

    As with all X-rays, having a mammogram exposes you to some radiation, but only a small amount. For every 10,000 women who have regular 3 yearly screening between the ages of 47 and 73, experts estimate that there will be between 3 and 6 extra breast cancers caused by radiation.

    However...... The current evidence suggests that breast screening reduced the number of deaths from breast cancer by about 1,300 a year in the UK.

  • steve2
    steve2

    Thanks for the overview of the research snare&racket. Good grounding on the state of treatments beats panicked responsivity. Medical professionals are often in invidious positions, expected to provide ongoing treatments within enforced budgets and held accoutable for outcomes. On the horizon are often highly expensive cutting edge treatments that have not yet undergone strict research testing but which garner widespread publicity by untested claims - to which loving and desperate caregivers, including parents, are highly susceptible. If there is already skepticism towards evidence-based medical treatment, it is an easy jump to step in and whisk one's child away.

    I have a sad feeling this will end in tears with no winners. I can imagine some JWs being a bit embarrassed by the father's stand.

  • krejames
    krejames

    The UK is investing £250m in two proton therapy centres one in London and one in Manchester but they're not expected to be available until 2018. child brain tumours and rare adult cancers are seen as the main issues to benefit from this therapy. I personally can't criticise this father for trying to do the best for his son And I don't think it was foolhardy at all. None of us can imagine what it is like in his place right now.

    source : cancer research Uk http://scienceblog.cancerresearchuk.org/2013/09/16/proton-therapy-is-coming-to-the-uk-but-what-does-it-mean-for-patients/

  • smiddy
    smiddy

    I just watched the u-tube , of the father asking to be allowed to give his child the care that the medical profession elsewhere beleives is a viable alternative treatment than what was given in the UK . { prior to their arrest in spain ? }

    His son was still being given the treatment he needed " while on the run ."

    He did not come across as a deluded cultist , but as a father who had his sons best interest at heart.

    If you havent seen this video , dont make a judgement until you do .

    I hope common sense prevails in this case and the appropiate/correct treatment is provided for their son .

    smiddy

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