Principles of Medical Ethics 

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.

Lobular and Inflammatory Breast Cancers

A message

10/6/00 from: PROJECT! OUTREACH: Early health Care, Education, Screening & Advocacy (for the early detection of breast cancer)

Introduction: Breast cancer is a very complex disease about which, unfortunately, not everyone is aware.

This message is in response to several questions lately about lobular and inflammatory breast cancers. More lives can be saved by access to routine health care, early detection, the expertise of our physicians, new technology and our better chemotherapy drugs.

Access to health care will help greatly because early detection may depend on more than breast examinations and mammography.

v Lobular invasive cancer is the one that can be missed by mammograms. The reason being that this is a tumor composed of very small cells some time the size of a lymphocyte, that do not grow making big masses that can be palpated by the surgeon or patient. These cells grow in a discrete fashion and the tumor can obtain a large size before they are detected. Cases may be diagnosed retrospectively, in other words the patient comes with metastasis (cancer of the lung or liver, etc) and when excellent pathology is utilized and experienced physicians they suspect lobular cancer.

The pattern of metastasis of lobular cancer is also a bit different than that of ductal tumors and many times can be confused with other lesions.  High-grade ductal carcinoma can also be "lobular" carcinoma, meaning we need to look for it in the other breast. Some women with lobular carcinoma elect to have early bilateral mastectomy, and at that time, other cancer(s) may be found. In the messages we receive from women with high-grade ductal carcinoma, or even ductal carcinoma in situ, they have reported being certain that there was "more cancer" or "it had gone further," and similar comments. Therefore, it behooves us all to carefully listen to the patient, who certainly would not desire such serious impacts on his/her life.

So, we ask, how do we know if we have it, if it may be somewhere else first? Regular, preventive health care is vitally important, and something our nation just does not seem to understand, for the most part, or we wouldn’t even elect people to office who didn’t put individuals health and welfare first. We can’t even have health care for our children or aging.

Only patient/citizen demand will change this. Any symptoms, shortness of breath, pain, discomfort, change in bowel habits, etc. a physician would much rather check out to prevent illness than have to treat one already established. We cannot and will not advise on any type of diet, supplements, ‘attitude,’ etc. Many recommendations (like eating cabbage to prevent breast cancer) may have some basis in fact, but unless there is proof, or the doctors who care for us and about us believe such things may have merit, its between the physician and the patient. If you cannot get to or find a doctor, go to an emergency room, or ask an R.N. (public health is something every RN program needs to beef up on, and fast!).

v Inflammatory carcinoma. These tumors are fortunately rare, but they always present as inflammatory mastitis and do not respond to antibiotics.  A few years ago, this was considered to be very lethal tumors, but now there is better chemotherapy. What is important is that the clinicians recognize that this is a tumor and not an inflammation so proper therapy is started as soon as possible. There are a number of protocols that have been started for IBC, but the problem is that they are rare, so no one can collect an adequate series unless the patients are referred. If we are not mistaken, NCI is trying to start one of the protocols.

Unfortunately, it is still one of the most aggressive types of breast cancer. We have much work to do, as breast cancer organizations, clinicians, researchers, and philanthropic groups so that we do not see these cancers without being able to find them early through totally new technology, and treatment.

v Paget's Disease:  This is a lesion of the skin of the nipple and areola. It is an in situ lesion in the majority of the cases (stays in the same place, does not spread) BUT, and this is important, in about 90% of the cases, patients with Paget's have an underlying breast cancer, in other words, Paget’s is not as much of a problem, but a red flag for what it is below, a DUCTAL CARCINOMA. That is why patients with Paget's frequently undergo more breast biopsies and even mastectomies. So the important message is not be fool by the fact that this is a skin lesion, what is important is to assure that there is no evidence of invasive cancer in the rest of the breast.

Diagnosis: Remember many women may have "a pimple" around their areolar or the darker area behind the nipple, and its not Paget’s Disease. However, your physician will carefully examine all parts of the breasts in a physical examination or if you notice a change. Don’t wait. Don’t be afraid to ask questions. Go to a public hospital if you cannot afford care, or to Planned Parenthood Centers for an ob-gyn examination and take your concerns there. Remember, The Breast & Cervical Cancer Treatment Cancer Act 2000 was passed by our legislators so that any person who is under-insured, or un-insured, will have funds for care! Social Security is very good to people with cancer who may be out of work for extended periods of time by granting a disability payment (not SSI, but SSD), and the States have funds as well. Most states have now ratified the Amendment (the Act) to include patients on Medicare, as well!

Regardless, your only concern is that YOU take the next best step that will move you closer to health and recovery - and forget about the money - just do it!

PROJECT! OUTREACH serves by first reaching those highest risk areas, and providing public information and education, only. Volunteer Community Liaisons first go into the highest risk areas, meet with the high-level leadership there (county commissioners, physicians, etc), and then arrange to meet the high risk "neighborhood communicators" so that they will be invited to be a part of the educational process, advocacy, and generate confidence in our Speakers, who will follow (the Community Liaisons) with an advocate, RN, student nurse, etc. The Speakers first assess the group’s understanding, concerns, fears, and then applicably provide health care consumerism, education to reduce fear, and empowerment through advocacy.

The mission of PROJECT! OUTREACH is to take this really acute information to everyone.  YOU have a right to see, talk to and get direct information from every physician who cares for you, including radiologists, and pathologists. There are sources to turn to: Federal law grants everyone the right to own their own original mammograms (not copies), and keep them (never letting them out of your sight), and take them on each doctor visit for clinical breast exam or clinical breast radiology. It is best if one uses the same radiologist, and breast examination physicians, and definitely places their mammograms in a safe place (like behind clothes hanging in a closet, or on a top shelf somewhere). NIH in Bethesda, Maryland will provide 2^nd opinions on pathology at no cost.

The term, "Survivor" only means one has survived chemo, surgery, treatment, etc. Breast cancer patients are SOLDIERS - until we have won this war!  It is a war.  We're losing more women every year than in the whole Viet Nam War - each year more than that whole terrible war over which we marched in the streets, and yelled in the Halls of Congress! Why are we not screaming and marching in the streets?  Are we afraid its not lady like?  One who has no hair, no breasts, or is not breathing any longer isn't concerned with being lady-like.

Words are important to the way we think and believe. The term "survivor" also casts a negative shadow on diagnosis and treatment. Wigs, prostheses, reconstruction, drains, pain, and fear cannot hide from the tissues of a person's body that they have breast cancer. During a month when the ACR is providing free or low cost mammograms to anyone who needs one we find a TV program giving away coupons for mammograms, and if the women send in their coupons they receive a free T-shirt that states something easily misinterpreted. It certainly isn’t something a radiologist or certified mammography technologist would do. The root word "fresh," is looked up on by some as inappropriate – certainly women do not have to be treated ‘freshly,’ by anyone! All in a month also observing Domestic Violence Awareness.

PLEASE DO NOT BELIEVE in new technology, new theories, new cures until you make sure that the findings have been replicated by other academic research centers, and look carefully for the editor’s comments!  Check with the Canadian Breast Cancer Network (cbcn@cbcn.ca) for anything coming out of Canada, or our own National Cancer Institute (NCI).  The PROJECT! will always work closely with them . For example, during the recent ridiculous research paper from Canadian researchers who reported routine breast mammography was not needed. CBCN jumped in to refute it at the same time I emailed the paper to them.

Don't wait - remember this, and don't forget it:  an emergency is anything that you think is an emergency! You are the customer.  Once a financial transaction takes place, the provider has a legal, moral, ethical and fiduciary responsibility to the consumer - at least in the U.S.  Dr. Leape at Harvard School of Public Health has alerted us to the fact that over 100,000 people died of unnecessary hospital acts. He and the AMA, ACR, FDA encourage people to report problems they perceive with hospitals and doctors. The reporting can be to your State Department of Health, the Joint Commission on Hospital Administration, the American College of Radiology, and your local medial society.

Write editorials.   Please remember, TV BREAST CANCER theme is just that, it sells ads.  Sorry, but that is business and the term some of these daytime comedians (and that's exactly what they are) use is degrading, and insults the intelligence of women who are serious about this disease and fighting it like hell every day of their lives, and then, if we make it through chemo, et al....every two - three months there after. PLEASE SPREAD THIS INFO AS WELL!

web master / index / rev 06.26.05