Almost exactly four years ago, I went for a routine mammogram. The mammogram showed a tumor. I immediately went to a surgeon who specialized in breast cancer matters.

My surgeon ordered a biopsy. The biopsy showed that the tumor was noninvasive, stage “0″ cancer. I was told that the tumor was “exceptionally hormonal”.

Immediately, my surgeon ordered additional ultrasounds, and a MRI and a PET scan. The PET scan target area was from the base of my skull to my ankles. Prior to receiving the results of these tests, my surgeon scheduled a mastectomy within two weeks and prescribed Tamoxifen as a “precaution”. (My surgeon did recommend a delay while I took chemo “because of my age”, but my oncologist nixed this idea.) I was frightened and agreed to do everything my surgeon recommended, although I insisted that I start the process of reconstruction during the mastectomy, specifically the insertion of a tissue expander by a plastic surgeon.

The day before the surgery, I was subjected to sentinel node mapping (a slowly inserted radioactive injection directly to the breast). In addition, I had yet another ultrasound to the breast which was not effected. Again, this was a “precaution”. (If the other breast had been effected, I did not have authorization from my insurance company for reconstruction on that breast, my plastic surgeon would not have had time to order an additional tissue expander, and I would have delayed the surgery.)

On the day of the surgery, I had a mastectomy, five lymph nodes removed, and a tissue expanded inserted. Twelve hours later, I was told to go home. Eventually, the final pathology came back that the tumor was noninvasive, stage 0, no lymph node involvement, and NOT hormonal receptive.

Six weeks after the mastectomy, I had a complete hysterectomy (I had met my health insurance deductible and decided to get rid of pesky fibroids). And, within six months of my mastectomy, I had several ultrasounds, one mammogram, TWO MRIs, and a biopsy on the remaining breast because the “skin seemed thick” (no tumor presented). It should be noted that my plastic surgeon was rather upset that I had the MRIs since the tissue expander had a magnet in it and it could have twisted during the MRIs which would have necessitated emergency surgery.

After my hysterectomy, my surgeon now recommended that I take Arimidex for five years at a cost to me (in spite of health insurance) of approximately $300/month. I REFUSED.

Why? The the entire breast was removed, and the tumor was noninvasive, stage 0, and non-hormonal. (Admittedly, the Tamoxifen taken before the mastectomy may have skewed the hormonal results.) More importantly, I reviewed what course of treatment I would be offered in other countries. Only in the United States would this nonsense be insisted upon for my type of cancer, especially after a mastectomy. (Too often, physicians take the word of pharma sales reps whose “medical training” consists of a BA in business management.)

Regardless, I have issues. If I had it to do over again:

1. I would agree to the mastectomy.

2. After receiving the original pathology that the tumor was noninvasive, stage 0, I would never have agreed to exposing my body to the radiation of a PET scan. (I am convinced that the breast cancer was caused by an unprescribed RAI to my thyroid which was given without the knowledge of my then doctor or my informed consent several years after diagnosis of the thyroid cancer.)

3. I never would have agreed to lymph node removal. Instead, I would have waited until after the mastectomy’s pathology report. If there were any micro invasions, and a second surgery was required, so what? (My surgeon did not have to answer to my insurance carrier since he was not under contract with it and I paid him out-of-pocket.)

4. After the mastectomy, I never would have agreed to the MRIs which was yet additional exposure to radiation since the effected breast was removed and the remaining breast “passed” a mammogram.

In addition, I resent that it took me THREE YEARS and a threat of sending my pathology to another lab for either my surgeon or oncologist to explain to me why the initial pathology was “extremely hormonal” and the final pathology was not hormonal at all.

And, last year my gyno quit me: Prior to my annual exam, I made an appointment for my annual mammogram directly with my radiologist and had the results sent to my gyno. This is a no-no. Instead, I was suppose to make an appointment with my gyno, discuss the mammogram, and pay for the appointment with my gyno. Then, once the results came back, I was suppose to make yet another appointment with my gyno, discuss the results, and pay for that appointment. My gyno told me that the radiologist had violated protocol by making an appointment directly with a patient.

….. I almost forgot, in the “best medical system in the world” I contracted MRSA during one of my surgeries. I won’t go through the details of my emergency room experience at another hospital (nurse talked nonstop on her cell phone while trying to insert an IV, did NOT wear latex gloves during the process). It was not pleasant.

There is also another side of it. There is a group of patients – maybe small – who really don’t want unnecessary tests and maybe even some of the recommended ones – like mammography.

The problem is – in our society people who choose not to be screened or maybe screened for some things but not others – are labeled stupid, ignorant, irresponsible that need to be convinced or even dragged to be screened. In cases like PSA – doctors just order it as part of blood test without even informing patients they do it. (Yes, I understand the legal issues, I am not talking about justification here, just stating what happens.). If a test is ordered as part of a blood test, most patients don’t feel comfortable asking a doctor what they are tested for as they trust their doctor to know what is best for the. Screening is not presented as a choice, it is presented as an obligation, as something “responsible people do”. Additionally, there was a study that showed that over 50% of annual physicals included unnecessary non-recommended tests. The problem is – a) most people don’t know what is recommended b) most of those who do don’t feel comfortable questioning the doctor. Especially since more often than not the test is done by a nurse even before one sees a doctor e.g. nurse does a non-recommended EKG while you are undressed and waiting for a doctor. Then before you live, the doctor gives you a large pink paper for a blood test and non-recommended urine test and leaves. How are you supposed to refuse these non-recommended tests?

Additionally, how would patients even know what is unnecessary? They are bombarded by messages to be tested for anything available on TV, radio, even in the mail. I got recently a flyer from a radiology lab advertising 3 cardiac imaging tests. With a requisite scary description of the conditions these tests can diagnose.

The real driver behind the push for all the tests by a patient is the preception that it is free to them.
This is part of it. But another part is the perception that it is harmless. I would imagine that this lack of understanding that tests have risks is more important driver than the cost. Especially considering that more and more employers are switching from HMOs with fixed co-payment to PPOs with a certain percentage co-insurance and a deductible. Such a test is likely to fall under a deductible, so patients do indeed pay for them.

Yes, they are all all cancers, but not every cancer will kill you even if left untreated. The problem is we don’t know which ones will metastasize and which ones will not. So , yes, every breast cancer is treated (though with varying levels of treatment from lumpectomy to mastectomy and chemotherapy). The issue is not overtreatment of breast cancers discovered by mammography, but rather overdiagnosis – if we weren’t looking so hard for cancer, than we wouldn’t be finding all these indolent (slow-growing, low-grade, non-metastasizing) tumors. We also wouldn’t find the ones which will be fatal (though mammography, as the article states, is much better at finding these indolent cancers) – this is the dilemma and until we have better ways of characterizing the behavior of these tumors, this is what we’re stuck with.

Dr Grumpy points out how patients keep asking for carotid dopplers. Why? Well, the real answer in their minds is Why not? It is free and some information is better than none. If healthcare was not perceived to be a free right, they would not be so demanding and more importantly, would start listening to their PCP more carefully; rather than getting the medical advice from TV commercials.

I’m not sure how many strokes are really prevented by these. I doubt enough to make it standard practice. But in our world patients demand tests, and will move to another doc who will do them if the first doctor won’t.