The Nightmares of "Standard Treatment" of Care
Thank you for sharing your inspiring journey. I can absolutely relate to your story and I feel it closely mirrors mine, except for the type of cancer. My journey began after religiously adhering to the recommended annual mammogram beginning at age 40 that our healthcare system promotes for breast cancer prevention (but more on that topic later). I thought this would be yet another routine mammogram. However, the results came back with some suspicious areas. Little did I know that this would be the beginning of a diagnostic nightmare.
The first pathology of the biopsy came back as showing a rare type of breast cancer, but very early stage. So, off I went to see a breast surgeon who explained in more detail that what I had is called papillary ductal carcinoma in situ also known as DCIS. This type of cancer is noninvasive and considered stage 0. Interestingly, one quarter of all the breast cancer being diagnosed now in the US is DCIS. So, compared to invasive cancer this diagnosis seemed like good news. That is until the surgeon told me the standard treatment of care for DCIS. I had 2 options: lumpectomy, radiation treatment and 5 years of a form of chemo drug therapy on Tamoxifen, or a mastectomy, with no radiation, but still the drugs. I was stunned. How could a stage 0, non-invasive, slow growing type of cancer require the same treatment as more serious types of invasive breast cancer? It was a surreal moment and I remember leaving the doctor's office in what I suppose some would call complete denial. In retrospect, what I thought was denial was my intuition telling me to pursue a second opinion and this was just what I did. I asked that my biopsy slides be sent to another pathologist. However, my insurance would only pay for a particular pathology group. This was a disadvantage because I learned that pathologists within a particular group or hospital will rarely contradict a colleagues findings. Sure enough the first diagnosis was confirmed by the second pathologist who worked in the same pathology group as the first.
In the meantime, I was doing some researching of my own, and learned how similar the pathology of my initial diagnosis could be to a different type of breast disease called atypical ductal hyperplasia (ADH). I wondered if I was grasping at straws, but once again my intuition told me to persist in this direction. My original breast surgeon was not supportive of my pursuing yet another pathology report and told me I was in denial. I found a new breast surgeon.
Even though I was still without a definitive diagnosis, I proceeded to do all the "due diligence" required of me by the health care system as a DCIS patient. I saw the plastic surgeon to discuss reconstruction options after mastectomy. Frankly, at this point I felt I would rather pursue the option of removing my breast because by doing so I would be able to avoid having radiation, which really, really scared me. I also saw the radiology and chemo oncologists to discuss radiation and chemo treatments because this is what breast cancer patients do to prepare for the standard treatments of care. In the course of my online breast cancer studies I happened upon an expert pathologist in the field of DCIS. Although he was outside of my insurance network, I decided to have him take a look at my biopsy samples. It took weeks for the lab to mail him my slides, but it was worth the wait because he validated my hunch. His diagnosis was not DCIS, but ADH.
Now I was in conflict because I basically had two conflicting pathology diagnoses. I felt I needed a "tie breaker". In comes a radiology oncologist who was a true man of medicine. He actually adhered to the first do no harm mission statement that physicians seem to have lost sight of these days. He told me that without a definitive pathology he would be unable to suggest radiation. He then took my pathology to tumor conferences that he attended (several over the course of 3 months). In the end he said that none of his colleagues could come to a consensus about the pathology of my biopsy.
Essentially I was left with no real diagnosis. However, I did know that the lumpectomy was a prudent course of treatment for anything atypical in the breast, so I pursued this option. Thankfully, I hadn't jumped to a quick decision after the first pathology or I would have lost my breast to mastectomy. I was totally at peace with doing only the lumpectomy, even though almost every doctor I saw treated me like I was crazy. I never did reveal to the breast surgeon who removed the tumor that I had no intention of doing radiation afterward. If I had I don't think they would have performed the surgery!
Lumpectomy has been the only one of the so called standard treatment of care options that I chose. I also decided to pursue healthy nutrition as my main source of "chemotherapy". This has became my medicine of choice. Being a fitness trainer by profession, I already was exercising regularly and thought I had the healthy eating down also. However, I have since learned that choosing an anti-inflammatory diet, eating organic, whole foods, and helping my body detoxify itself is critical in the prevention of disease. Also avoiding chemicals in my environment that are endocrine disruptors, or that mimic estrogen is equally important, particularly for breast cancer prevention. Western medicine doesn't even address these critical factors of disease. In fact, the "prevention" of breast cancer doesn't focus on prevention at all. The reality is that mammography is simply a screening tool and only detects breast cancer after it is present in the breast. Prevention involves using strategies to prevent disease from starting in the first place! Yet, because of the way breast cancer is "marketed" to woman, many of us believe that mammography is preventing breast cancer.
Unfortunately, one of the reasons for this situation is the sad fact that "prevention" and treatment of breast cancer in the US has become a money making industry in itself. Mammography screening, surgery, radiation, drugs only serve to fuel the fire that is the current standard of care. Rather than looking at the unregulated chemical industry (a big group of lobbyists) and how they pollute us with toxins in our foods and personal care products (just to name a few items), the powers that be focus on feeding the pharmaceutical industry (another big group of lobbyists) through the standard treatments currently offered for breast cancer. But, I digress and have already gone on long enough. I wholeheartedly agree and underscore what you so aptly said, "when it comes to treatment, more intervention is not necessarily better." In my situation this was definitely true. I will close by encouraging every woman with DCIS to at least pursue getting a second opinion because pathology isn't error proof and the treatment of disease depends on this information. It's also important to get in touch with your "gut" feelings and follow your intuition. Advocate for yourself. It isn't easy to buck the system, but ultimately, our health and quality of life depends on it.
PS During my journey I was also given Louise Hay's book, "You Can Heal Your Life." I'm thankful that the title has proved prophetic for me. Thanks for the opportunity to share my story. It's the first time I've spoken of it since it occurred a year ago this month! I'd welcome your insights at my blog about spirit, mind and body health at Well-Quest.org. Peace and healing to you.
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My (Elle's) Response to "Nightmare" from Sue
by Elle Bieling
Thank-you so much, Sue, for caring enough to take the time to share your health journey. I state "health" instead of "cancer" journey, because you truly never had cancer of any type and are one healthy sister! So many women will benefit by your story.
I admire you for your belief in yourself and your intuition. So much heartache, pain and invasion to your body-mind-soul was prevented by your taking charge of your own health and well-being.
What a testament to the inadequacy of our health care system that you had to experience such a nightmare!
Never in history has it been so important to do your own research, trust your own body's messages, practice holistic and natural health prevention measures as you advise!
Your website is loaded with great nutritional and health information. Giving back to others is so wonderful!
Never before has it been so important to spend time with your body so that you can be in tune with its messages. Without spending time to listen in meditative bodywork practices, you will never hear the wisdom!
There is just too many fragments in our health care system, too many specialists and not enough holistic, whole-body practitioners to help us navigate through the maze!
It is true that the recommended annual mammogram brings about more false positives, which the health care community does not adequately address. There is much controversy over this practice in the medical community. Some physicians suggest that breast thermography may be an alternative for the inadequacies of mammography. In the medical community, however, the jury is still out.
The complementary and alternative medicine physicians (CAM), have embraced thermograpy as a viable alternative. If you dare to ask for breast thermography, I would like to hear your story! If all the sisters unite, perhaps we can change practice?
As it seems to me, from reading all the research, that breast self-exam is the single most effective predictor of breast cancer. Even in light of this, mammography is a powerful money, making machine that will not be given up easily by the medical community.
So I STRONGLY URGE all women to learn how to do a breast self exam, and do it consistently on a monthly basis. Click here if you don't know how or when to do a self exam so that you may learn and start immediately at http://www.nationalbreastcancer.org/about-breast-cancer/breast-self-exam.aspx.
Once any type of lump IS found on mammography, there is plenty of evidence to show that lumpectomy is an effective treatment for a lot of women. Sue is a perfect example of this. She was brave enough to believe in this procedure and forget the radiation.
So, don't just jump into the first recommended treatment for your breast cancer. Get plenty of recommendations and second opinions, and let Western medicine be the complement to your own holistic plan for health!
I would love Sue to tell us what she decided as a follow-up to her lumpectomy from traditional medicine. Annual mammograms? Annual follow-up medical doctor visits? Self-healing, holistic practices?
May you all find your internal body wisdom, and may you all heal your body-mind-soul as Sue has done!
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