Why The Finger Exists

Because America needs more people who are willing to put a finger, especially the middle finger, in the eyes of the stupid.

One Response to “Why The Finger Exists”

  1. Sue said
    October 20, 2007 at 1:59 am

    Dear Cyradisb,
    It is unfortunate that you associate the word “Pre-vivor” with being forced to do anything about your risk. Pre-vivor stands for “survivor of a predisposition to cancer” a term coined by members of the organization FORCE: Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org) to give a voice to a marginalized and misunderstood community of people who are at high risk for cancer. Members of the pre-vivor community face the challenge of living with knowledge that they are high risk. They often have to make difficult choices or undergo procedures that are often employed in people with cancer, yet they don’t have a diagnosis. Yearly breast MRI plus mammogram, transvaginal ultrasounds, decisions about taking medications to lower the risk for cancer, and the agonizing decision about whether or not to have surgery to lower risk are part of agonizing issues that face the high-risk community. None of it is easy and the decisions are very individual. And FORCE as an organization supports informed decisions based on information from experts in cancer genetics.

    I understand your anger, and I share your anger towards cancer. However I am saddened by your anger towards a community that, (whether or not you acknowledge the connection), you are a part of. The high-risk community, those with a family history and particularly those with an inherited mutation that increases the risk for cancer shoulders an unfair burden of cancer. Nevertheless there are groups out there that vocally believe that there is too much research into cancer genetics. The term pre-vivor was coined to unite a community that is not receiving the share of research dollars or resources in proportion to the cancer burden this community carries. If we ever want better options: better preventions, better screening, and better treatment options, our community needs to advocate for it. I admire your confidence in the effectiveness of breast cancer treatment should you be unfortunate enough to be diagnosed but as someone who went through 6 cycles of chemotherapy and 33 radiation treatments in order to improve my survival odds by about 10% to live to see my son who was a toddler at the time grow up, I personally would like to see better, less toxic, more effective treatment options.

    There is nothing about the term pre-vivor, about the organization FORCE or about genetic counseling and genetic testing that mandates someone to have surgery to lower their risk for cancer. Genetic counselors in general take a nondirective approach to risk management and help the patient make an informed decision for risk management that is right for them. There are other options available, beyond surgery, however, the only way to learn these options and to know the relative benefit and limitations of each is to speak with a qualified expert in cancer genetics which is typically the genetic counselors and geneticists.

    As a cancer survivor and a woman who carries a BRCA 2 mutation, and as an advocate for the high-risk and BRCA community I deeply respect you decision not to have genetic testing. However, I do worry about the lack of complete information reflected by the post, which makes me concerned that you have not consulted with a genetic counselor prior to making your decision. The omission of acknowledgement of risk for ovarian cancer, for instance, is of concern. Genetic testing can help determine the risk for ovarian cancer in your family. Further, as a genetics expert would explain, you would not be the best first person to have genetic testing in your family. Genetic testing is best approached in a family by testing the person most likely to carry a mutation. Your mother or your aunt would be the most appropriate first person to have testing in your family.

    I am sorry that friends and acquaintances have taken a strong-arm and likely well-intentioned but misguided approach your cancer risk. No one can tell you what to do about your cancer risk and although I’m sure that the approach comes from caring about you, I do believe that people who try to pressure loved-ones into action are misguided. My general suggestion to anyone who is concerned about a loved ones risk for cancer is to dispense with the statistics and articles (unless asked for) and to help their loved one get to a genetics expert where they can get the most credible and up-to-date information available.

    I know very few other medical subjects that elicit such a strong reaction from people. I know very few people who wouldn’t run straight to a breast surgeon for a lump in their breast, most people will find a cardiologist to work up their chest pain, most people will have suspicious moles looked at by a dermatologist without question. But I have found when it comes to the topic of hereditary cancer risk, risk management, and genetic testing, many people will make medical decisions and draw conclusions without the benefit of consulting with a genetics expert to receive credible and up-to-date information on which to base their decision.

    As a patient advocate for the high-risk and BRCA community, I don’t promote or discourage genetic testing or one risk management strategy over another. But I am proud to say that my mission and goal and the goal of the organization FORCE which coined the term “Pre-vivor” is to help people get the information that they need to make informed decisions. One of the most common questions that I field is how to find a genetics expert. For anyone who is seeking genetic information, you can find a genetic counselor through the National Society of Genetic Counselors at http://www.nsgc.org . You can also find genetic experts through the National Cancer Institute by calling (800)4CANCER.

    Warm regards,
    Sue

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