One of the concerns surrounding the use of industrial pesticides is that many of these products also contain carcinogens which can also cause breast cancer. Personally, I did not like finding out that the medication that I was taken, to prevent a re-occurrence, was manufactured by a company that also sold products that contain cancer causing chemicals. Where I live there is a factory close to my home, and smelling the emissions from the plant was a common part of my childhood. In one of the poorest parts of town there is a toxic cleanup of a former coal to gas plant in progress. This cleanup site is close to the campus of the University of Illinois at Urbana-Champaign, and many students who attend the university are unaware of some of the environmental issues that have enveloped the area.
As a cancer patient, who was under forty at the time of diagnosis, I also discovered that much of the known research that is out there is geared towards a much older demographic. Many of the resources that have been developed in the past fifty years are often with women who are post menopause in mind. As such, much of the money and the industry which has sprung up around breast cancer tend to focus on where the most profit will be made. As a result young women in their 20's and 30's are left to deal with treatment plans and options that have not been originally designed with their needs in mind. One organization that addressed this is the Young Survival Coalition (http://www.youngsurvival.org) which developed from young women who wanted to find age appropriate resources and advocacy. Younger women deal with specific needs and issues, such as fertility, that differentiate themselves from the older population.
I remember when I attended the support group it felt kind of isolating to be in a position where I was still raising a child at home and working full time. Most of the women I met had supportive spouses and a different network of people available to them. I found going through the process of the cancer journey that many of the resources that were available to patients did not apply to me. I had to find people to do basic things for me, such as mowing my yard, because my oncologist told me not to do yard work. Yet the local American Cancer Society did not have that as a resource. I called them up and got a huge packet of paperwork, which was not very helpful to my particular situation.
Seven years later, I still have some questions regarding cancer. When I was done with my treatments it was as if I no longer existed to the doctors who treated me. Why is it that when a person hits the "magic five' it's considered to be the same as being cured? I often read stories of women who have had their cancer return ten or twenty years later. Additionally, some of the information on survivors of childhood cancer shows that long term health effects are a lingering issue. Even though my hair has grown back from the chemo, and reconstructive surgery has made it possible for me to wear "normal' clothes, I still feel the invisible mark of cancer on my body. One of the things I have experiences is that wonderful phenomena known as "chemo brain" and my memory is not the same now, that it was before my illness. I also still struggle with fatigue. When I made the decision to go back to graduate school after my treatments I was terrified that my memory issues would cloud my ability to learn and do the necessary work. Even though it was a challenge, I was still able to earn my masters degree.
When I go to a doctor's appointment I have to be specific that no blood pressure compression sleeves or needles are to be used on my left arm. I had lymph nodes removed when I had a partial mastectomy in 2003 and I still have numbness in my arm. The scar tissue from the surgeries and radiation can still be painful, and my skin has been damaged permanently. I wonder if the reason why there seems to be so little research on this is due to the profits not really being there for researchers or drug companies. As it is, this is the tip of the iceberg. Only this particular fortress is a much different one than what wrecked the Titanic and became embedded in the memory of my grandfather.
What about the environment and the industrialized agriculture's influence on the occurrences of breast cancer? We focus on lifestyle and genetics but often overlook other factors. How much of this is due to polluting industries being involved in the sale and marketing of cancers cures? Even though AstraZeneca operates under a different name, the association with Syngenta should not be ignored. Many of the corporations who do market products with the promise to donate to research do not let their efforts undermine or undercut their profits. KitchenAid promises to donate fifty dollars for every "pink" mixer that is sold to the Susan G. Komen For The Cure foundation, but you have to purchase the pink mixers and the website for KitchenAid charges over three hundred dollars for one of the mixers.
One website offered by BCA asks consumers to "Think before you pink" and critically consider the purchases that one makes in the name of breast cancer (http://thinkbeforeyoupink.org/). Do you need to spend over three hundred dollars on a Kitchen Aid mixer, or can you just donate the fifty dollars directly to research? While much of the dialogue and discourse surrounds early detection and treatment, I also believe we need to be critical of how non-profits benefit from the ongoing presence of disease. For instance, in 1904 an organization formed with the intent to wipe out tuberculosis. The "National Association for the Study and Prevention of Tuberculosis" this advocacy group worked tirelessly to prevent the spread of the disease, and to treat individuals who were affected. As the group made progress and developed funds geared towards better diagnostic and treatment approaches, eventually the scourge of this disease faded. The end result, in order to remain a viable organization and to continue raising funds, they had to expand their scope to include other respiratory diseases and illnesses. Now this society is better known as the American Lung Association.
Additionally, I would like to see more focus and research be done on the long term aspects of surviving cancer. Having been through the traditional approaches to cancer treatment I wonder how my body will respond ten years, or twenty years from now. Will the scar tissue I have continue to hurt on occasion, and will the numbness that I feel in my left arm ever subside? While just being alive is important, I think the medical establishment and research often neglects long term quality of life issues faced by cancer survivors. Being a cancer survivor does not always entail being sprinkled with magic pixie dust, turning into a wise sage, and walking on rainbows. The emotional, physical, and financial costs of the disease can be far reaching, and post cancer follow ups need far better care and attention than what our culture within the United States is offering.
Above all, cancer survivors need to maintain their voice. I have had well meaning individuals tell me how "grateful' I should be just for being alive, when I've mentioned some of the pitfalls of survivor-ship. I find that very condescending, and I will continue to speak out on the quality of life issues that I face. Having cancer is like joining a club that no one wants to be a part of, and once you have paid your dues, you are a member for life. Even though I am currently doing fine, the truth is cancer will remain a part of my life. It doesn't define who I am today, but it's a part of my story nonetheless. If there is one thing that cancer has taught me, it's that I am my own best advocate, and it's up to me to take a stand.
For More Information:
http://thinkbeforeyoupink.org/
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