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Sep 21, 2020 12:01PM
Sep 21, 2020 12:24PM
Onthinice, you are correct about the choice of options, but I don't think you have a full or accurate understanding of each of the options. Or maybe you are in a place where you've just chosen to focus on the negative aspects.
"You wait and watch to be diagnosed, hoping its early, take a drug that has horrendous side effects that lowers your risk somewhat and doesn't provide protection for all types of breast cancer, and if you are diagnosed that "Golden standard" medication used to prevent recurrence no longer works for ER positive breast cancers(the most common type), or ask for prophylactic mastectomy that has a 90-98 percent chance of seeing you never experience this monster, BUT insurance will only cover this if you are extreme high risk, with many biopsies have positive genetic testing and are young enough for it to be cost effective for the insurance provider. Well, most older women get diagnosed, having a genetic predisposition is low, and many times its to late when you need a biopsy!"
"hoping its early" Well, 60% of invasive breast cancer diagnoses are localized, i.e. in the breast only with no lymph node involvement. If you add in DCIS, which is a pre-invasive diagnosis, it's more like 80%. That doesn't guarantee survival, of course, but the majority of early stage patients are successfully treated. With high risk screening, it is realistic to hope that a breast cancer diagnosis will be caught early. But again, no guarantee of course.
"a drug that has horrendous side effects" Some people do experience horrendous side effects. But many patients take Tamoxifen or AIs for 5 or 10 years with just a few side effects that are very manageable. Until someone is on these meds, they won't know how well they tolerate them.
"that lowers your risk somewhat" I don't consider a 50%+ reduction in breast cancer risk for high risk patients to be "somewhat".
"if you are diagnosed that "Golden standard" medication used to prevent recurrence no longer works for ER positive breast cancers". No. If you are diagnosed, it does not mean that Tamox. or an AI won't work to reduce the risk of a localized or metastatic cancer. And if you were on one of the meds before, you can always try another.
"insurance will only cover this if you are extreme high risk, with many biopsies have positive genetic testing and are young enough for it to be cost effective for the insurance provider." I'm sure there are cases, but I've been here a long time and I don't think I've ever seen insurance deny coverage for a PBMX for anyone who has tested positive for a genetic mutation, of any age and regardless of the number of biopsies they've had. I have also seen insurance companies often approve PBMXs for women with no genetic mutation but with a known high risk factor or sometimes even with just family history. I've seen more doctors balk at doing a PBMX for patients without an extensive history than I've seen insurance companies deny coverage. Not that I'm a fan of insurance companies - this board is littered with insurance refusal stories. But I've been surprised by the fact that PBMXs are usually approved even when the patient's doctors themselves are questioning the need.
"Well, most older women get diagnosed, having a genetic predisposition is low" Yes, breast cancer is more often diagnosed in women who are in their 60s and 70s. This is true of most diseases and is the result of the natural failure of our genes as humans get older. Only approx. 10%-15% of breast cancer is caused by a genetic mutation, and usually, but not always, these cancers are diagnosed at a younger age. That's because these individuals started life with 1/2 of the normal failure of one particular gene already done (i.e. the failed gene was inherited from one parent).
"many times its to late when you need a biopsy!" No. Only 5%-6% of breast cancer diagnoses are Stage IV de novo, i.e. metastatic at time of diagnosis.
What to ask at your appointment? Have you already had genetic testing done, and is this an appointment to discuss the results? Or is this an appointment to decide if you will proceed with genetic testing? If it's the latter, I've found the genetic counsellors are usually very good at explaining the pros and cons of testing, and what the results might mean, whether positive for a genetic mutation or not. One important question would be about the choice of the panel, i.e. the number of genes you would be tested for, and which ones. This will be influenced by family health history. These days most people get more than just BRCA testing.
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke