The Right to Choose Your Cancer Treatment

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    Thanks CP, this is a perfect example of how science actually advances !

    6 Scientific Advances Courtesy of Reckless Self-Endangerment 

    "In school science labs, we always learned that proper experimentation hinged on a delicate balance of adequate subjects, samples sizes and controls and a precise understanding of all the variables of the environment. But it turns out that even science isn't always an exact science. There are plenty of white-coated professionals throughout history who spat in the face of empirical research and just injected themselves with shit to see what would happen. And to some of those men, we owe the basis of modern medicine.

    In 1898, Bier was responsible for the first successful attempt at spinal anesthesia, proving to the medical community that regional numbing was possible. This opened the door for countless advancements in surgery and medicine, and it was all thanks to one man who dared to ask the question, "What's the worst that could happen if I shot cocaine into my spine?"

    Read more: 6 Scientific Advances Courtesy of Reckless Self-Endangerment | Cracked.com http://www.cracked.com/article_19829_6-scientific-advances-courtesy-reckless-self-endangerment.html#ixzz1xm0bh8Q3

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Thanks, CP

    The history of the radical is discussed in depth in The Emperor of all Maladies, S. Mukherjee. Terrifying.

    Also interesting to note, when Nancy Reagan was First Lady, she DID have a mastectomy, and the a NYTimes journalist reported doctors CRITICAL of her "unnecessary disfiguring surgery."  She made a CHOICE - did not choose to have a lumpectomy, an she got public criticism for that choice.  Go figure.  Think the criticism was expecially harsh, from doctors, as Reagan's father was a doctor, seems she was expected to "know better" than to CHOOSE her own treatment!  Happily, she's still alive.

     

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2012

    Even recently researchers have taken personal risks to show that accepted medical beliefs were wrong. But if I took such a risk and recovered it would be written off as an unscientific testimonial.

    Barry Marshall and Robin Warren showed that the bacterium Helicobacter pylori (H. pylori) is the cause of most peptic ulcers, reversing decades of medical doctrine holding that ulcers were caused by stress, spicy foods, and too much acid. 

     It has been claimed that the H. pylori theory was ridiculed by the establishment scientists and doctors, who did not believe that any bacteria could live in the acidic environment of the stomach. Marshall has been quoted as saying in 1998 that "(e)veryone was against me, but I knew I was right.

     After failed attempts to infect piglets in 1984, Marshall, after having a baseline endoscopy done, drank a Petri dish containing cultured H. pylori, expecting to develop, perhaps years later, an ulcer. He was surprised when, only three days later, he developed vague nausea and halitosis, (due to the achlorhydria, there was no acid to kill bacteria in the stomach, and their waste products manifested as bad breath), noticed only by his mother. On days 5-8, he developed achlorydric (no acid) vomiting. On day eight, he had a repeat endoscopy and biopsy, which showed massive inflammation (gastritis), and H. Pylori was cultured. On the fourteenth day after ingestion, a third endoscopy was done, and Marshall began to take antibiotics.

    In 2005, the Karolinska Institute in Stockholm awarded the Nobel Prize in Physiology or Medicine to Marshall and Robin Warren, his long-time collaborator, "for their discovery of the bacterium Helicobacter pylori and its role in gastritis and peptic ulcer disease" 

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2012

    The history of medicine is full of so many blunders and inhumane treatments.  There's no reason to believe we are out of Kindergarten in our medical expertise.  On another thread I listed many conditions that are only treatable or manageable using medicine.  Not counting surgery or vaccines for prevention, there's only a tiny list of curable conditions.

    Infections - Bacterial, fungal, a few viruses, TB gastric ulcersare included.

    Parasites, I'm not sure if that includes Malaria or if it can't be cured.

    Some leukemias, lymphoma and some rare cancers.

    Any others that anyone knows about that can be completely cured by medicine, not surgery?

    Often our immune system deals with viral infections such as colds and maybe other conditions.  Everything else is for life, and that's hundreds of conditions including all the common ones.  Take medications or put up with the symptoms.

    I include conventional and alternative medicine, but wonder if there are alternative cures that are not used due to jealousies from the established medical system, backed by the law.

  • cp418
    cp418 Member Posts: 7,079
    edited June 2012

    "I include conventional and alternative medicine, but wonder if there are alternative cures that are not used due to jealousies from the established medical system, backed by the law."

     Totally agree --- more like too easy and inexpensive to extract and pharma companies cannot place patent and control it or make $$$$$$$$.  At least that was common response on recent news about parsley and celery having anti-breast cancer response when tested in tumor induced mice. 

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited June 2012

    I am so glad we are having this conversation. I'm not necessarily interested in the legal right, but more in the fact that we are creating an atmosphere that will hopefully encourage tolerance. The "moral" right to choose our paths in life without facing harassment.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited June 2012

    Same focus for me, 1Athena1. I appreciate this thread too.

    Stepping outside conventional practices a moment.... When research indicated that olive oil was possibly especially helpful for dealing with HER2, I wondered out loud whether something as "simple" as spraying sterile olive oil on the tumor bed with tumors that have any HER2 positive component might have helpful results in limiting recurrence/mets. To me that is the kind of free thinking that has sometimes led to better science over time, although not always.

    I still wonder.

    A.A.

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2012

    There seems to be a misapprehension by some that we need higher education to make decisions concerning our health or put forward our point of view on treatments.  Actually health professionals are the ones who must be very careful what they say as they are bound by professional conduct rules.

    Everyone who is adult and of sound mind has the right to choose their own treatment or reject what is offered by their health specialist.  Otherwise, what is the point of being informed of all the side effects of a medication or treatment?  And we all have freedom of speech apart from those from a few rare countries.

    People from all walks of life, all education levels, cultures and backgrounds come here for support and information.  We can't say, no, we won't accept you as you can't speak good English, or your cultural medical treatments aren't accepted on this forum.  So this is a multi-cultural issue too.

  • thenewme
    thenewme Member Posts: 1,611
    edited June 2012

    Is there anyone, anywhere on the entire BCO board, who advocates taking away the "right to choose your cancer treatment?"

    It's terribly disingenuous to imply that anyone here believes cultural differences, education level, social status, or any other factor are used to deny someone's choice of treatment or deny their opportunity to be here.  

    Facts and evidence-based treatment information are completely independent of all those factors, and should be included in discussions, IMO. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited June 2012

    As with any public discussion, there are different biases here, some subtle and some not so subtle. The article makes the point that the medical profession has its own bias about treatment and that sometimes it takes independent thinking by patients to make progress that the medical profession has not stepped forward to offer.

    "She just wanted them to learn about their options and make their own choices."

  • sweetbean
    sweetbean Member Posts: 1,931
    edited June 2012

    thenewme, I don't think that was the point of the article.  Everyone has the right to choose whatever treatment he or she wants, provided that they can afford it.  In the article, the BC patient chose a progressive (for the time) mastectomy, rather than the radical MX that her doctors were insisting on.  When she went on TV to advocate for the option, the doctors were condescending and made fun of her.  Of course, a radical MX these days would be considered barbaric.  But that's thing about any "out of the box" thinking - the regular medical establishment tends to come down hard, completely dismissing it out of hand.  And I say this as someone who had the full course of conventional treatment.  However, I find it frustrating when options are limited by what can often be a very narrow viewpoint.  I think we would all be doing better if folks were more openminded.

  • thenewme
    thenewme Member Posts: 1,611
    edited June 2012

    "...she never told women to have the operation that she did. She just wanted them to learn about their options and make their own choices. "

    Exactly.  "Learning about options" seems to be the sticking point here, though.

    To my mind, learning about options means looking at all sides of an issue (evidence-based, as well as testimonials and personal opinions) so that I can decide for myself, in my specific circumstances, whether the potential benefits outweigh the potential risks. 

    Here on this particular forum, though, "learning about options" appears to mean something entirely different. 

     

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited June 2012

    Is it surprising that the alternative medicine forum discusses mostly alternative medicine, or that it discusses possible choices not limited to those advocated by the conventional medical process?

  • sweetbean
    sweetbean Member Posts: 1,931
    edited June 2012

    I guess, for me, the take-away from the article is that she was advocating for women to learn about a new procedure, but the medical establishment absolutely ridiculed her because it wasn't standard of care and told her that, by advocating for what is now a completely standard procedure, she was putting others' lives at risk.

    And, while there are definitely some who have a "knee-jerk" support reaction for alt therapies (and rejection of conventional treatment), I think the vast majority of us are on these threads to learn more about alt treatments and decide whether or not they are right for us.  I think most of us are looking at these issues from every available angle.  But it seems that we are often labeled as "stupid" or "crazy" for even considering an alt treatment, let alone pursuing it.  (Don't forget, a large number of women on the Alt Forums have had conventional treatment and use alt therapies to supplement.)

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2012

    Thenewme, I've forgotten what the article said and have used my monthly quota at NY Times.  I was commenting on the objections on this forum to some of my personal choices and opinions.  I had two people question my credibility based on misquotes or misunderstandings about my personal life, not my treatment choices.

    I had BC. I'm interested in alternatives and new research. I don't need any other credibility, but maybe the people concerned need to ask themselves why they would comment on my  personal life rather than the subject of the OP and the ongoing discussion.

    You said... It's terribly disingenuous to imply that anyone here believes cultural differences, education level, social status, or any other factor are used to deny someone's choice of treatment or deny their opportunity to be here.

    So why was I harassed?  I've also seen several members rubbished because their English was lacking as it was not their native tongue, their emotional health was questionable or they chose not to have surgery.  And others say they were shunned by their health professionals because of their choices.  We may not deny members their right to be here formally, but the harassment and inuendo may drive them away.  I see Chilli has not been back for weeks.

    If we allow these things to continue without calling them what they are then others will join in.  Some of us know how to assert ourselves and are not afraid to do so.

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