Before You Donate
Think very seriously before donating to any breastcancer organization, or fundraising program until you read their Annual Report to see who their top contributors are, and if they have a product that appears frequently in the message the organization sends to the public. That would be unethical and its illegal. The same applies to a request that the public buys products, but does not receive a "donor receipt" for tax-deductible purpose. Read any and all food labels that breastcancer "non-profits" are promoting to raise money. Some organizations tell the public to help them raise money by asking you to visit their websites, but that only gives them "hits" to increase their sponsors.
Another tip, "signing" an online Petition is not acceptable, so don't fall for such antics. An ethical non-profit, or professional will not request your visit to their website, nor use "cookies" placed on your computer when you visit their site.
Purchase the Breastcancer Postage Stamp, the Post Office will always give you your charitable deduction receipt. Its a valid form of fund raising.
TO INTRODUCE MYSELF. . .
Addendum, 12/2000
This web site traces my experience with breast cancer. I hope that you will feel comforted by those of us who are available to help and encourage you to seek early breast care and screening for breast cancer. This is my journey: to avoid the cancer that took the lives of my precious younger brother and sister, and share with you the ways, the means, and the people who helped me cope, from the moment I heard the first words: ". . . there is no doubt, that is malignant!"
The feelings of betrayal by a "system" I trusted, emotional trials, and fears I experienced in my search for a new technology to prove my suspicion that a common type of breast cancer can spread, are here to help others, as well as the "gaps" I found, which obstructed an earlier diagnosis caused by mere inept professionalism, yet of a potency that threatened the life I had worked so long and so hard to sustain and for which I spent years in advance planning.
The journey has shown me that women are not treated with competent, respectful consideration at least as far as their breast are concerned. Many women have contacted me with experiences similar to my own and much worse—they are terminally ill now, and many permanently disabled. Other medical professionals have witnessed this and will concur.
More Women Die Each Year Than Men Died In The Entire Viet Nam War. Where is our Washington Monument?
Until the American College of Radiology and the FDA strictly enforces standards of practice, and federal law, women are going to keep dying or maimed by the 100,000s annually (400,000 expected new cases in 2005 with at least 40,000 deaths). Not all deaths caused from breast cancer are reported as such due to the fact that cardiac or lung damage occurred due to radiation or other causes of death identified on death certificates.
The Breast and Cervical Cancer Treatment Act passed in 2000 so those with no insurance or under-insured (not on Medicare) may be treated. However important that Act is, and I did work hard actually lobbying for it from my bed during chemo by making recordings) we have the cart before the horse. WE must go to Congress together and insist that critical diseases, breast cancer, be public policy, and that mammography, sonography, breast surgeons examination, and diagnosis by two FDA approved radiologists be funded for those who fall into that group above. Women need equity, not equality.
Furthermore, it is my contention that groups with the highest incidence of breast, cervical or uterine cancer are not receiving the supportive, culturally respectful, direct information that can reduce deaths from these cancers by over fifty percent, through a national focus on prevention, funds for early diagnosis, healthcare consumer education and advocacy. We are not reaching pre-adolescents, when a high majority of breast cancers begin during puberty. Few people in the U.S. know their rights as healthcare consumers.
Spring 2001, the states had to ratify TBCCTA 2000, to include those on Medicare. Please check with your legislature's web site to see if your Governor signed the amendment and if not what is the hold up. Oklahoma did not (it was signed in 2004, effective January 2005, but "grandfathered" to 9/1/04). E-mail your State congressional representatives and senator. Remember, some of us are on Medicare due to disability from the aggressive treatments for breast cancer and the emotional impact of trying to find a diagnosis, and many women experience repressed memories during "down times" such as breast cancer forces upon us. Be good to yourself, and to others who are breast cancer patients. Realize that this does not go into "remission," clinically—it cannot be proven, like leukemia, etc.
That is why diagnostic mammograms are requested by breast surgeons on a regular basis after mastectomy. If women have breast reconstruction, it makes it harder to see chest wall tumors, and other signs of possible metastasis. Reconstruction?
Please read Kathy LaTour's book: The Brest Cancer Companion, Avon Books, and read pg. 220, the document by Fritz Barton, Jr. MD, University of Texas Southwestern Medical School, (Chief of Plastic Surgery FROM 1971 TO 1991). If I had only met him there, a part of the incredible pompous arrogance suffered at that institution would have been 25% less. His comments are helpful in making decisions about breast reconstruction, implants, etc. He clearly states that delaying the decision is better for the patient in several ways, but still explains, clearly, what each procedure requires, and what to expect. I, personally, decided against any reconstruction—and I am so glad that I did. I have worn prostheses only three times in three years. Freedom, at last.
However, I am from a different mind set. There is nothing physical to me that qualifies or quantifies anyone. I continue to feel that way about myself. Not that I don't think, "Hmmm, will I ever lose the weight gained during treatments (yes, some women DO gain weight with breast cancer and now NIH Nutrition and Dr. William Dooley have found out why) and have my nails done, keep my hair trimmed and enjoy a few rhinestones on red toenails now and then during the summer. I do care. But, I do not expect what is external to me to qualify who I am.
Spending A Little to Save A Lot
In 1987, our nation's foremost radiologist stated that he could perform a screening mammogram on every woman in Washington, D.C., for the cost of treating one case of advanced breast cancer. Today, that amount has at least doubled. In 2001 we are a most foolish society if we do not heed such figures let alone care about the lives of those who gave birth to all of us.
Equally important, I want to encourage others to seek, believe in their own instincts, and have access to wonderful people who are ready to help, and believe that there are doctors who care, and the National Institutes of Health. You may have to search but the investment of time is investing in your life and your well-being.
In early 1998, my concerns were about the ratio of lymph nodes to the potency of the tumor or linear calcification sites, and now two years later, its becoming a scientific investigation. All the pills, chemo, radiation, and alternative methods at this point, cannot replace the importance of early screening, diagnosis, and surgical intervention with lymph node examination and excision for pathology.
It is important to add, here, that Dr. William Dooley has developed Ductal Lavage for high risk women, similar to the Pap Smear, but on the nipple. Anyone with a family history of breast cancer should contact PROJECT! OUTREACH investigate family history, care, etc. Their chief research investigator, Dr. Dooley, former chief John Hopkins, was installed as the Williams Endowed Chair in Oncology Surgery at University of Oklahoma Medical Center, in Oklahoma City.
May this web site provide help to others to learn more about the realities of breast cancer, and help them to avoid the pitfalls that I experienced, and how I tried to overcome them. I wish I could meet you! E-mails come in droves and everyone is so terrific it seems, no matter how ill they are, and its wonderful to be of help when I can. Just keep in mind that there are wonderful, caring physicians working to help me, help you! I could not do this alone. Nor could I bear to refer to anyone I didn't wholly trust to do the very best for me, personally, as a cancer specialist of many disciplines.
Please look at my new healthcare consumer Section II e-med4u and you can help me with a new outreach and advocacy program I have started to teach others, in outlying areas, what I now know, and have the support of doctors who are caring for me, and others. If you want to be involved in your town, or city contact me. Anyone may join our spirit-siblings, in volunteering to answer an e-mail from someone worried about breast cancer, or someone they love who is suffering.
A Pink Ribbon? Yes! But Tied In Knots!
Survivor? In remission? At what point do these terms begin? Is there an objective, clinical analysis to prove a women no longer has breast cancer, or that it is "in remission?" What exactly does "in remission" mean?
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Ref: Stedman's Online Medical Dictionary
Volunteers are needed to stop the deaths of women due to delayed or missed diagnoses. We are all needed to fight this war before anyone may be termed a "survivor." We are, together, soldiers capable of forcing appropriate technology, care for all, respect for our lives, and those whom we love. The truth is all that we really need are competent physicians who do not grasp the latest techniques without sound replicated studies. We must be, trust, love and care for ourselves and those we love—and believe in our first responses.
Be sure to visit our Annexcafe Newsgroup where you'll find the most loving breast cancer patients, and those who've thus far survived for years, and those who've had recurrences, etc. We're becoming a close group and hope to meet one day. *Right now (6/01) they are praying for me while I'm going through a positive bone scan and heading to Dr. Dooley for the ultimate surgical decision.
Go to annexcafe.support.breastcancer to reach this great newsgroup. Tell them I sent you!
* I 'made it.' He removed the three left floating ribs, and took wide margins. National Cancer Institute's chief pathologist reported the margins were clear. I am about "ten years older", though. smile
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reviewed: Sunday, July 22, 2007