Many Breast Cancer Patients Uninformed About Options: Study

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Survey of survivors found that only about half were asked their preference for type of surgery



Thu Jan 26, 2012 01:57 PM

As a 3-time breast cancer survivor, this results of this study are a validation of my own observations. Although my surgeon has been very open about treatment options, I've met many women who haven't known about them and — more importantly — don't want to know. The attitude is, most generally, "I want the doctor to take care of it". One of the bigger misconception's I've run into is that a mastectomy will ensure there will never be another breast cancer. This leads to shock and a sense of betrayal when there's a recurrence on the chest wall, or a metastasis. In the 11 years I've been researching breast cancer from a survivor's point of view, I've found too little informationin patient-friendly languagethat tells the real story of what's known, what isn't yet known, and potential outcomes (including side effects and their impact on quality of life). While I don't doubt the good intentions of those who treat breast cancer patients, I can't help but feel the profit-side of treating it has become the driving force. I place the blame for this on medical insurance companies and increasing consolidation of medical practices which are resulting in massive layoffs of staff. During my most recent breast cancer (Sept. 2011), the number of nurses in pre-op were so few that the IV nurse, who was visibly too rushed to insert the needle properly, didn't have time to re-do it. I had a bruised hand for a week. So you've not only got a lack of information being provided, there's also a lack of sufficient staff to tend to patients. If the medical community is alarmed about this, I'm not finding evidence of it.

Thu Jan 26, 2012 03:51 PM

I first had breast cancer in 1992 with a mastectomy. I remained cancer free, or so I thought, until 2010, 18 years.  Now it has metastasized to the bone in many lesions throughout.  I was told it could return at any time, usually to the brain, liver, and/or lung and sometimes the bone.  I was never looking for it in the bone and did no followup tests.  When it was found in the bone due to a CT for something else, I was shocked.  Then I was told that the bone was the most likely place it would go first.  Who knew?  The doctors didn't paint that picture, nor any of my many readings.  Then recenlty I read something written by a European doctor doing research on how to prevent metastasis, since so much experimentation is being done with giving Tamoxifen and/or Femara following the first occurance in an effort to prevent metastasis, but she says that even though this is presently the protocol, they have not been able to prevent metastasis at about the 20 year mark.  So, if you live that long after the first bout, you can definitely expect it to return someplace else within 20 years.  Now, what doctors are telling us this?   Also, with the present drugs they use I still have to be very firm with my doctors to get them to reveal how much longer they expect a drug will extend my life, why, because, they are often talking about months.  I feel very cheated by what is happening in this country with Big Pharm companies having bought out the FDA so that no one is on our side, and the doctors have either bought into the system or been brainwashed by their training or both.  I recently learned that MR ultrasound is being used to completely ablate (kill) prostate cancer in the UK and Europe for the past ten years.  Not being used in the USA.  Here they are finally using it to eliminate fibroids in the uterus.  And they are doing trails on stopping the pain when it has metastasized to the bone, but in Europe they went one step further and simply applied more waves for longer and ablated the cancer completely.  This has been going on for the past two years in Europe, but the studies here are using it only for pain and now recently adding chemo to the equation, but not simply leaving the chemo out and doing what has been successful in Europe.  All these trails are held back by Big Phama and the politics of medicine in this country, which is they do not find anything and do a good job of casting doubt on anything that doesn't make the Big Corporations LOTS of money.  The entire situation is disgusting and we are in the middle of it with our lives at stake.

Thu Jan 26, 2012 03:56 PM

Sorry, in the above post I typed trails instead of trials.

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