<p>First off, a huge thank you to all who posted and PMed (I’ll get to PMs later). My first thought last night when I was mentally mobilizing to do research fast was to start a thread here. I don’t know that I would have found the FORCE site without it or some of the other links. Today is a very busy day, but here is an update. I have called the doctor’s office and arranged to speak to the radiologist (not the surgeon) at the end of the day. I am going to express to her my concerns about what happened yesterday and the bias I felt. I’m a psychotherapist and I thought about what I would say if someone walked into my office with this story. I’d encourage them to give themselves enough time to process this decision and to be fully informed and to think about what the implications were psychologically as well as health-wise and what the implications might be for the daughter (I have a daughter). The more I think about it, the more I’m troubled that anyone would have said anything but “Here is the information, here are the options should you test positive and don’t do anything today. Think about it. Talk with your husband about it. Sit with it. Know that you can call with questions and then if it’s right for you, we’ll give you the test.” </p>
<p>Anyhow, in addition to the conversation I’ll have with the doctor, I’ve left a message on the helpline of FORCE and hope to get a callback. I also e-mailed Sue Friedman of FORCE and I’m hoping to get on tonight’s FORCE chat. I want to find out if genetic counseling is covered by my insurance. If it isn’t, that may factor into my decision. </p>
<p>Thanks again for all the great feedback. It’s very helpful.</p>
<p>Speaking to the insurance issue… when genetic testing for hereditary cancer first became available now over 15 years ago, there was concern that a positive test result would put you at risk of losing your health and life insurance, even employment. In fact, in the early research we conducted involving genetic testing, we had to list that as a possible risk factor in the consent forms (even with no evidence base). </p>
<p>Fast forward 15 years… there have been virtually no cases of insurance or employment discrimination reported compared to the vast number of people who have had testing. Early on, most states enacted laws to protect against discrimination based on genetic status. And more recently, in 2008, the federal govt passed the Genetic Information Nondiscrimination Act (GINA) which protect against using genetic information for health insurance or employment discrimination. Where GINA falls short is in protection against life and long-term care insurance, however. </p>
<p>Regardless of these laws, life and other insurance companies don’t need a genetic test result to know what your familial risk of cancer is. They ask for your family history and can make inferences based on that alone. Thus, avoiding genetic testing out of fear of insurance discrimination may not necessarily be offering any protection. </p>
<p>“The majority of breast cancer patients are negative for the BRCA mutations (90%?), so I don’t see what you would gain if you had the test.”
BRCA1 and BRCA2 mutations are rare, and account for only about 5-10% of all breast cancers. What breast cancer survivors gain by having the test is more information about their personal cancer risk to help them make decisions about ways to reduce their risk - like having a double mastectomy, or having an oophorectomy to reduce ovarian and breast cancer risk. </p>
<p>They also can gain information to help their siblings and children. Cancers that are hereditary can develop at an earlier age compared to the average risk person. So, a young woman who is BRCA positive would be advised to start having breast screening at an age younger than 40 0r 50, when most women start breast screening. This gives her the best chance of finding a cancer at an earlier stage when it is most treatable. She also may want to consider the option of prophylactic surgery, which is a personal decision, but she would know what her options are for reducing her cancer risk.</p>
<p>Great info, Psi. I attended a FORCE online chat tonight and got some good support. I will touch base with my radiologist tomorrow. I also received a helpful e-mail from the director of FORCE today. All of the input I’ve received has convinced me to cancel the test tomorrow – I only hope I reach them in time (they are supposed to call me before starting it). I have nothing to gain by rushing into this and a lot to gain by taking the time to meet with a genetic counselor. I was told today that I may not actually be a good candidate for the test and could end up with inconclusive results – that’s the kind of thing a genetic counselor could figure out with enough information. I’m uncomfortable with some of what transpired yesterday and I think to do something impulsive after years of being disinclined to test would be unwise. It seems the lesser risk to put the genie back in the bottle and to take some time weighing the issues carefully as opposed to rushing heedlessly forward without being fully informed and counseled. I can live with the uncertainty of not knowing; I know that because I have lived with it my entire life. Of course, if I find I can’t live with the uncertainty, now that I came so close, I can take the test. But if I take it, I want to do it on my terms, fully informed and having processed all the ramifications.</p>
<p>last year my gyn recommended the test based on my family history solely on my father’s side, and I had the blood drawn. But when Myriad lab called to say that my insurance wouldn’t cover it (which I knew would be the case), I cancelled the test. Subsequently, I tracked down more specifics about my family history and spoke with a specialist in this area about my history. The only cancer in my family was on my father’s side, but all three of my female cousins got cancer, two with breast cancer who died while in their 50’s or 60’s and one who had ovarian cancer but is still living. She tested positive for the mutant gene. One of my two aunts on that side also died from breast cancer. So based on the specialist’s recommendation, I ended up going ahead with the test, I just didn’t want to be in the position of obsessing forever about whether to have the test. I didn’t test positive but I had eventually come around to the view that I would deal with whatever I had to if the test results had gone the other way. </p>
<p>This is a long way of saying that I needed to explore more about the test and think about it before I felt comfortable going ahead to have the test done.</p>
<p>I canceled the test this morning. It turns out they will hold the sample for sixty days in case I change my mind. I feel good about this and will look into seeing a genetic counselor.</p>