Navigating Breast Cancer Treatment: MD as patient - Post 1

I had a breast surgeon who reportedly has been performing lumpectomies for 30 years. 

My diagnosis is Stage IIb, specifically T2 (over 2 cm) NO (i+) (isolated tumor cells found in 1 of 2 biopsied nodes) MO (no metastases) invasive ductal carcinoma, ER+, PR-, HER-2/neu - with a proliferation index of intermediate rate by Mib-1/Ki67 = 25 % and a grade of 2/3 = intermediate differentiation.

My OncotypeDx score was 31 - high intermediate, and an estimated average rate of 20% for distant recurrence at 10 years, which led to the recommendation that I have chemotherapy (I finished four cycles of Cytoxan and Taxotere in early March). 

My OncotypeDx score was based on my being node negative. Had I been HER-2/neu positive (I had a FISH test done to confirm that I was HER-2 negative, as the I was informed that the previous tests that were done on my tumor had a high rate (up to 10 %) of false negatives for the HER-2 receptor), they would have recommended that I add Herceptin to my chemo regimen.   

Dear Beesie,

Thank you for your posting. I am very pleased to know that you have survived 5 years plus out from diagnosis and that you feel your care has been excellent. However, as both a physician and a patient myself, I have to respectfully disagree with many of your general and global comments about doctors (especially surgeons and academic decision leaders in the field). I feel that your response is very defensive given that I have shared only my personal experiences with doctors and care providers in getting help for my breast cancer. I would add that my personal experience is consistent with my professional experience as a holistic physician in both private, clinic and hospital practice over many years.

As physicians, our training, the law and the Hippocratic oath obligate us to engage in a meaningful process of informed consent with each and every patient who consents to a specific treatment or intervention that we have discussed or recommended. This involves a comprehensive and meaningful review of the risks and benefits of each treatment in language that the patient can understand. 

Sometimes informed consent forms may require that the patient agree to understanding only the most severe and most common complications/risks of a procedure or treatment. Sometimes, the patient merely signs a form saying that the doctor has reviewed all of the risks involved and that the patient acknowledges their understanding in consenting to the procedure.

The fact that a patient may be hesitant to have a procedure done due to the knowledge they have a 1% risk of a severe complication weighed against the expected benefits does not justify ignoring the informed consent process. Too many patients sign informed consent forms without reading or understanding what is going to be done to them and what they may likely or less likely expect. 

During my medical training, an Arabic speaking Middle Eastern woman whom I was assigned to care for was hospitalized for late stage colon cancer. The doctors thought her life could have been saved, but it would have required removal of much of her colon and a colostomy. Her oldest son, who was head of the household, refused to allow a translator to communicate this information directly to his mother, stating that the shame of a colostomy in their culture would be worse than death and he would not agree to the surgery or a colostomy. As a medical student, I objected to not insisting that the translator be able to communicate to the patient what the doctors were saying. I appealed to my attending that the case be brought before the hospital ethics committee before the patient was discharged, but my concerns were ignored. The family took the woman out of the hospital and brought her home to die, without any treatment. She was not even discharged with a notation in the medical record of "against medical advice."

I think that if a patient cannot give informed consent due to cognitive or emotional reasons, then the physician is obligated to provide or recommend to the patient an advocate who can/will assist them in the decision making process.  The patient advocate whom I was assigned at CPMC was severely cognitively impaired and provided me enormous mis-information following my initial diagnosis. And, like most women at time of initial diagnosis, I was ill-prepared to process all of the complex and contradictory information I was provided. This situation only served to increase my stress, impair my functioning and create more barriers to my effective treatment and recovery.

The fact is that most of the side effects that I have suffered and was not informed of in advance are common ones. And, while patients should indeed expect (and verify) a surgeon to have extensive expertise in the surgery they are performing, they should also expect their surgeon to have an extensive fund of knowledge about the entire procedure that they are recommending, even if the surgeon is not performing all of the procedure(s) themselves.

I think that you are confusing good medical practice, medical competency, and coordinated, individualized care with variations in clinical practice that I consider to be primarily the result of our fragmented health "system" and physicians' lack of capacity (in large part due to non-clinical work overload and economic pressures) to provide truly individualized, coordinated and competent care.

I do believe that most physicians, given the choice and proper incentives, would work in the best interests of patients.  This, however, is not the current reality, and there is overwhelming evidence, both anecdotal and published, that only those who can afford to pay privately for concierge level care, are likely to get the level and quality of care that we used to take for granted. A good analogy is the public school system, where music programs and physical education are often no longer even part of the basic curriculum.

I do not think that good medical care should be evaluated on the basis of style. While I so respect your voice and personal experiences as a survivor, I think it is likewise important not to dismiss the experiences of women like myself, who may suffer or have suffered as a result of poor, improper or unnecessary treatments or care by one or more physicians or care providers.

While I am very grateful that national standards and criteria for the diagnosis, staging and treatment of breast cancer, which many providers rely on in lieu of truly individualized care, produce generally good survival outcomes, particularly for those in early stages, had I postponed my annual mammogram another year, as is now being recommended, my cancer would have likely metastasized. Also, despite being at a relatively early stage, I was strongly encouraged to try a relatively new treatment, one which I would not have had, had I been given more information.

In addition to the side effects from the surgery and radiation I have suffered (aside from those from chemotherapy), I was subsequently left in limbo regarding how to proceed in terms of further radiation, as there were (also unbeknownst to me at the time) no good data to help guide my future decisions on this treatment and no information from the tumor board on their rationale in recommending whole breast radiation following intraoperative radiation.

There are real problems in presuming physician "excellence" in the absence of good longitudinal outcomes data and detailed, responsible patient reviews.  Excellence is otherwise typically determined by medical providers and the standing of the physician within their specialty based on academic affiliation, research and publications, economic success, and reputation. And, it is also a problem that each medical specialty tends to over advocate for its own type of treatment/intervention regardless of evidence, whereby different specialists within one institutional "team" may advocate/recommend totally different tests or treatments.  I would ask you if among three different specialists, all considered excellent, each gave you a different recommendation and rationale for their decision (based on the same data and studies), how would you decide whom to trust?

The last issue, which I have not yet addressed (versus issues with conventional treatments which I have started with), and which is my biggest complaint with the cancer care I have received locally and throughout most of the country is the lack of coordinated integrated care (i.e. conventional and complementary). This is despite the fact that all major cancer centers in the SF Bay area advertise themselves as being truly integrated, when in fact they are not.

The complementary care services provided at these local integrative centers (nutrition and supplements, acupuncture, mindfulness therapies and treatments including progressive muscle relaxation, guided imagery, neurofeedback, etc.) are provided as non-medical programs, with services that are not generally covered by insurance, are for the most part provided as an adjunct to covered services, are not well coordinated with conventional care or providers, and are typically run like high-end spas and concierge practices.

Following my surgery, I was looking for a medical oncologist that embraced both conventional and complementary treatments. I first called the Cancer Treatment Centers of America and when I told them I had an HMO that wouldn't cover their services, they told me I could not even get an evaluation there until I put down a $250,000 deposit. 

I subsequently called one of the most highly regarded institutionally affiliated integrative centers in the Bay area to ask one of their "complementary" medical oncologists for a referral.  The doctor I spoke with said to me, "why are you calling me, I'm not a referral agency and I don't have any openings for 4 months anyway." He said he worked mostly with medical oncologists from the medical facility whose name his center carried and said he helped people only after and separately from the main conventional treatments they received. I said, "I don't mean to annoy you" and he replied, "Well you are."

I subsequently asked him if there were any truly integrated cancer treatment centers in the US. He said, "Block in Chicago" and hung up the phone on me. He was referring to Keith I. Block, M.D. and the Block Center in Skokie, Ill.  I am currently under Dr. Block's care for my diet, nutritional and supplement regimen and other complementary approaches and highly recommend his book, Life Over Cancer - The Block Center Program for Integrative Cancer Treatment.  

I will be writing more about my experiences at/with the Block Center in future posts. He and his wife, Penny B. Block, Ph.D. have been major leaders in efforts to promote and provide truly integrative cancer treatment.