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.

(c) 2002  C. J. Hinkley Thompson

Subject: Pathology

Resource: AJCC Prognostic Factors Consensus Conference Report (partial) 1998; Breast Cancer Working Group

NOTE: Taken from a consulting pathologist’s microscopic consultation report on lymph nodes in summer 1998.

" . . . and an alternative explanation for the presence of these cells may be post-procedure epithelial displacement, as a result of the patient’s prior biopsy procedures. As a result of disruption of tissues, cells can gain access to the lymphatic system and be transported."

"It is of interest that in a recent report of the Breast Cancer Working Group, for the AJCC Prognostic factors Consensus Conference Report that the group recommends that, ‘modal micrometastasis detected by unusual means (multiple step-sections or other than conventional staining and light microscopy) be designated by the use of "u" so that a pN0 node by usual examination containing a tumor detected by unusual means would be pN1u and not pN1a, and further, that until the significance of micrometastases detected by unusual means has been established that pNu be handled as pN0 in the staging of breast cancer. The recommendation would appear particularly relevant to this case since whether or not this represents true micrometastasis versus "lymphatic transport of epithelial cells" is not established."

What Does This Mean To Women To Whom Biopsy Is Recommended?

The type of biopsy performed (such as a stereotactic needle core biopsy) may pass through a malignant tumor and/or distribute malignant cells so that they enter the patient’s blood stream and are ‘caught’ by the lymphatic system, and found eventually in her axillary nodes (hopefully!).

Secondly, during a study of medical records of a patient who had a Sentinel Lymph Node Dissection during her "lumpectomy" and since the dye didn’t go to the SLN but into nodes in the patient’s chest, nothing was done for follow-up. Needless to say, this young woman’s malignancy had already spread to her chest wall, etc. The patient, who should have had an excellent prognosis, in 1998, became terminally ill with metastatic breast cancer, was on several trials to save her life and died at the age of 58, after a six-year battle to save her own life. Her original cancer was missed in Michigan, then again in Knoxville, Tennessee.

Women must keep the following in mind:

1. Take ownership of YOUR mammograms and pathology specimens and keep them with YOU at all times. Never leave them at any facility to "be examined later by the physician." Just tell people "I’m willing to do the footwork right now—call me when s/he is ready to meet with me and review my films." Doctors appreciate this time flexibility. I ended up with a very important pathology slide "missing" and the pathologist had "no idea" where it went, but had sent my slides via surface mail, with no tracking number. Not too swift, or too swift, as the case may be.

2. Always locate and request a 2^nd and 3^rd opinion on everything.

3. Remain in contact with your insurance company so they know that you are  attempting to be a wise healthcare consumer.

4. Do not pay any physician you have not met and had the opportunity to discuss his/her findings on your case (e.g.: radiologists, pathologists, "consultants).

1.  Women must hold their stead, and simply make demands that are the right of any consumer in a cash transaction (there is NO free medical care - thus the indigent are still being paid for and must NOT feel less important). 

2. If a direct meeting and time to discuss films, pathology, treatments, etc. then women must tell the practice that she will go somewhere else - or call back later and ask to speak to the chief of pathology or radiiology, and see what s/he says before you go on to another group.  However, watch carefully to be certain the practice serves all women the same way, even if they have to change their procedures.  If your experience isn't available to all women, it won't be available to you for long, either.

5. Do not tolerate one-hour waits to see any physician, unless frequent communications advise her that there has been an emergency, and that her physician knows her appointment.

a. Never remain in an examining room until the physician is ready to see her after the next patient.

b. Too many women are sitting half-nude in freezing environments waiting to be seen.

c. Leave, and call your insurance company (ies) to notify them to not pay the claim.

6. The finding of a breast mass does not preclude calcifications, nor malignant microcalcifications—there is a saying in radiology, "Look for what you do not see, not what you see."

7. Breast cancer does not suddenly appear on a mammogram, or in her body. It has been reported that a period of 10 years or more may have elapsed, in fact. Therefore, there is no rush—except to build their cancer care team, and support network.

8. Call oncology floors of area hospitals and ask RNs for referrals to breast surgeons and oncologists (do not select someone whom she hears, "He is such a ‘doll.’).

a. Listen for serious recommendations.

b. Oncology nurses and staff are pretty sharp when it comes to knowing who is excellent in their geographic area.

c. Be cautious about Society memberships and Board Certifications as the only validation of physician. Such are membership organizations and they protect their paying members.

d. Do not rely on a physician’s referral because "we’ve been family friends for a long time;" such friendships usually preclude actual knowledge of expertise.

9. Be certain several breast surgeons are consulted and have exhausted all optional means of detection (ultra-sound especially, which at best should be done in the surgeon's office to avoid a tech running between the doctor and patient to "see" if the right area was examined. That is costly and most time-consuming. 

10. Meet with several oncologists specializing in breast cancer. Look for board certification in hematology and internal medicine as well as oncology in the oncologists selected.

11. Discuss diagnostic options with all the above and discuss the AJCC Prognostic Factors Consensus Conference Report, which is vastly updated by now, and we know that DCIS can spread (Time Magazine, February 2001 has an excellent feature: Rethinking Breast Cancer).

12. Bottom line: be prepared to discuss your case as thoroughly as possible; however, this does not mean an M.D. or an R. N is required to expect excellent care: when in doubt, ask the physician to put in writing that their procedure does not compromise any prior research releases, and it has sufficient years of data to be the best options, and it will not harm surrounding tissues (e.g.: radiation: harm to the lungs, aortic arch, heart, spine, etc).

13. Several times during discussions, ask which breast "are we talking about?" to be certain the physician has your case very much in the forefront of the discussion. Doctors have hundreds of very sick people and one who spends time with you will also spend time with their other patients and knows their cases. Do not feel sorry for a practitioner like this: they are doing their job.

14. Make your decision who you want on your team and invite those people: including radiologists, pathologists, surgeons, psychiatrists/psychologists, internal medicine, oncologists, and whomever else you want including friends, clergy, advocate.

15. Patient responsibilities:

a. Check the background of each member of your team through local patients, RNs, newspaper archives, online resources, your primary care physician. Physicians are legally responsible for any referrals they make as much as if they were the physician making an error if one occurs. Do not hide the fact that you are checking their credentials. It is comforting to excellent physicians to know you are sure about them before they take you as a patient.

b. IF you are a "clinic patient," or "public hospital patient," on Medicare, or cannot pay for care, this does not release anyone from serving you equal to paying, insured patients. There is no such thing as free medical care: someone is paying. So do not be daunted by feeling you don’t deserve equal treatment. NIH/NCI is always available to you for referrals, and second options on pathology and other diagnostic procedures. REMEMBER: the private patient (with insurance) enters medical care with the providers knowing they may be reimbursed about 60% of their charges; the public patient is guaranteed payment to doctors and hospitals. So, let’s roll out the red carpet for public patients!

c. Remember it is important that your team accepts that you are the head of the team, and you plan on letting each member know ‘where’ you are emotionally, physically, socially, financially, etc., so if there ever comes a time when you cannot speak for yourself, you want them to know what your wishes are, and know you!

d. When diagnoses are questionable, pull your team together; a team member may suggest that the team meet, as well.

e. Do not be fearful of this closeness. It is the true delivery of medical care, and it humanizes the process—we are human! The whole team is human and, bearing this in mind, if one of the members performs in a questionably ethical nature, find a replacement, and tell this member why.

f. Be open to listening, but adamant on points that you are certain you know yourself well enough to make decisions (see "Prophylactic Mastectomy").

i. Surgeons who have the highest number of breast surgeries have patients with the best outcomes.

ii. Listen to your surgeons, but listen to your "heart" as well.

iii. Consult a psychiatrist or psychologist to "check out" your feelings, questions, concerns.

iv. Fax your doctors if necessary, to ask them questions you still have lingering, even such seemingly mundane questions as, "Why are you choosing this particular hospital?" or "I am still scared! What’s the next step to helping me get beyond this?"

g. Prophylactic Mastectomy (mastectomy to prevent breast cancer).

1. Do not jump for a prophylactic mastectomy IF you are also thinking of the size of reconstructed breasts you want at the same time. That is no guarantee!

2. Mastectomy is a surgical procedure to save a life where there is a diagnosed malignancy, or strong possibility of breast cancer developing (family history, repeated "pre-malignant," or malignant findings; etc after close observation by a highly qualified breast surgeon.

3. Reconstruction must not be considered at the time of breast cancer when the woman is ill, her immune system is not optimal, and further treatments (chemotherapy, more surgery, etc) may be yet to follow, and the tissues do not have a chance to heal well.

4. Insurance and Medicare provides for reconstruction on any woman who has had a mastectomy.

5. Remember—reconstruction takes many more hours under anesthesia when women’s bodies are fighting a malignancy very strenuously.

6. Many visits to potential plastic surgeons must be made before one is decided upon.

7. Women who undergo reconstruction have no guarantee that cancer will not spread to their chest walls, etc. and reconstructed breasts may present an obstacle to future findings of malignancies in the chest area.

8. Be sure to ask how much the procedure costs, totally, and how many follow-up visits for how long will be required "at the outside." If the plastic surgeon comes back with "You have insurance, don’t you?" find someone else.

a. Women would be astounded if they knew the actual costs of reconstruction, the potential complications, and the impact such has on their bodies.

b. Prophylactic mastectomy offers no guarantee that the perhaps many years a woman has gone through with "scares" will really stop.

c. Do not look for a "God" or Deity in your caregivers, but expect the best.

16. Team responsibilities (physicians):

a. Return patient phone calls or pages (attorneys have been disbarred for not returning clients phone calls).

b. Communicate openly with the patient

c. Keep the patient informed of new data, and review with patient as new Consensus emerges, but have that data open and critically examine it with the patient and answer all questions honestly.

d. Do not confine your practice to the few drug companies that won the annual lottery to market your practice. Call in a Ph.D. pharmacologist if necessary.

e. Inform patients that "trials" are not needed for a newly diagnoses patient who has not gone through the initial protocols for breast cancer. There is far too much "Trials" marketing to patients in the public press and online to be ethical. Patients do not have any idea of what trials consist of or the risk to their possibly very healthy outcomes otherwise.

f. Receive patients’ writings and recommendations and distribute them in your practice. Do not ignore this venue of support for other patients, even with other cancer diagnoses.

g. Do not support one breast cancer organization. Be open to new paradigms as long as they are a tax-exempt organization. Get involved. Serve!

h. Consider new patients who have never been "exposed" to cancer treatments. Its a very frightening experience, even for medical professionals.

Provide a separate waiting area for new patients and consults so that the newly diagnosed patients are not exposed to rows of patients in chemotherapy recliners with IV poles of chemo dripping into their veins, hairless, ravaged by malignancies. This seriously disrupts the somatic and psychological balance of any human being and its reprehensible. Think of your own loved ones walking in to the usual oncology practice. Think of your own little children, in fact; patients with a questionable diagnosis of cancer are in a regressive state. Visit MD Anderson's main lobby. That is an excellent example of a "never do..."

i. Join your patients whenever you can for procures that you are not performing (e.g.: surgery, MRIs, bone scans, rehab, chemotherapy, etc.). An oncologist dropping by to squeeze the hand of your patient as she is being prepared in pre-op for mastectomy has an incredible impact on her outcome.

j. Insist that you have reports from all of your patients’ physicians on the team, including radiological reviews, prior measurements comparisons, etc. Insist your colleagues respect you as well. If members of the patient’s team are under-performing, please ask your patient to request other physicians s/he sees to send you reports. That is the easiest way to open communications. Every patient is cognizant of the lack of inter-communications between physicians. Bear in mind that physicians are legally responsible for their referrals.

k. Tell the truth at all times: if a patient’s life style has been seriously harmed by careless medical attention, procedures, negligence, include the facts in any inquiries. Today’s patient is not being considered—only the objective "outcomes" which have nothing to do with the actual impact on the patient, and eventual quality of life, or life span.

l. Remember, you are in charge of your patient’s cases. No blame may ethically or morally be placed on others. Oversee their in-hospital care and immediate home discharge care like a hound dog. Such observations will indeed make you successful and practice more enjoyable.

m. Do not try to "hide" your real life from your very real patients. Knowing each other is part of belonging to the creative universe, and a greater tolerance and understanding will exist between patient and physician.

Reviewed: Monday, June 27, 2005