Five Years Plus

{July 24, 2010}   To Beam or not to Beam

My annual breast screening appointment date is coming up in September. In Between Two Worlds, I reported that I’d already decided not to have another mammogram. At that time I agreed with my oncologist’s urging to have an MRI instead. Almost immediately I felt uncomfortable with that decision and now I don’t know what to think or what I’ll do as this deadline approaches.

First, let me explain my dilemma with respect to having another mammogram. Having already had breast cancer, I have a higher than average risk of getting it again. An annual mammogram is the “gold standard” for detecting breast cancer at an early stage. Therefore, I should be happy to have one annually (and my oncologist certainly holds this position). However, mammogram machines deliver a powerful x-ray, according to one source perhaps 1000 times stronger than a chest x-ray, sending ionizing radiation, a known carcinogen, into the breast tissue. Since mammograms have difficulty detecting cancer in dense breast tissues, I am often subjected to additional radiation as the radiologist works conscientiously to take extra views of my breast in the hopes of not missing anything. Having already demonstrated the predisposition to develop cancer in the breast, I reason that it is unwise for me to continue to expose myself to known carcinogens. Experts think that in part, it is the cumulative exposure to radiation over a lifetime that increases the risk of cancer from that cause. Therefore, it seems to me that any time is the right time to stop such exposure.

Even though annual mammograms are considered the Standard of Care, as I recounted in The Ninth Life, mammograms are by no means fool proof. The false positive rate is significant, 95 percent of women who are called back for additional screening do not have cancer. Two out of every three women who end up being referred for biopsies do not have cancer. The false negative rate is also noteworthy, with about one in every five cancers missed by mammograms.

So what about the MRI? An MRI makes a clearer, more detailed image than a mammogram, so it should be a better screening tool, right? An MRI doesn’t use x-rays. Rather, the patient is given a contrasting agent (like gadolinium) by injection and then put into a powerful magnetic field and probed with radio frequencies. There is no scientific evidence that these frequencies of electromagnetic radiation cause cancer or are otherwise harmful. The contrasting agent can cause reactions in persons with kidney problems, but otherwise, this test seems less deleterious than the mammogram, although it is lengthier, more expensive and more uncomfortable in my opinion. Unfortunately it also increases the risk of false positives and could lead to unnecessary biopsies and the associated anxiety, cost, time and discomfort.

This is at the heart of my distress as I approach the crossroads in September. I don’t want to subject myself to additional carcinogenic radiation through a mammogram. Neither do I want to expose myself to the anxiety of an MRI which is a stressful test in itself and runs a greater risk of a false positive requiring a biopsy to disambiguate. I am especially sensitive to anxiety because of my propensity toward mood and sleep issues (as I reported in Good Night Sweet Princess). In fact, after having a colonoscopy a few years ago at the recommendation of my OB/GYN and GP, it took me about three months to reestablish my equilibrium. I treat the havoc in my life that results from anxiety as a very real side effect of such a test.

Which leaves me where? Do I want my remaining breast to go unmonitored? With my history, completely opting out of breast screening seems like a foolhardy idea. Thankfully there are three options which do not have any negative health effects. The first is the old standby – manual self examination. This is actually the way I discovered my cancer, so even though it is not a method of early detection, I believe it is still a worthwhile practice. If I find something manually, I can have a sonogram, although at that point a mammogram would also be recommended. A sonogram, also known as ultrasound is quick, not uncomfortable, requires no contrasting agent or ionizing radiation. It creates an image which can distinguish between a solid tumor and fluid filled cyst. The third harm-free alternative is a relatively new imaging method is thermography.

Thermography measures the amount of heat emitted by the body, in this case the breast tissue. Abnormal cells are usually hotter because they require a greater blood supply and therefore show up on the color image that is formed. The upsides are that it is a comfortable procedure with no negative side effects. It also seems that it can detect abnormalities in the breast tissue before a mammogram and has a lower false positive rate. The downsides are that although a thermogram is relatively inexpensive, it is not currently covered by medical insurance and is therefore an out of pocket expense for the patient. Second, thermography is unregulated so one has to be careful to use a reputable provider. Fortunately we have a provider who visits a nearby office monthly. Finally, the vast majority of radiologists and oncologists are not trained in this technology, and will not make recommendations based on its results. Therefore, the thermogram is sent to a center to be read by properly trained radiologists and will not be read by the radiologist who has followed my case since 2005.

As I said in Baby Steps, my first principle in making decisions about my health and healthcare is “First, do no harm.” For this reason, I’m reluctant to have another mammogram or an MRI for purely screening purposes. There is more research on this that I want to understand fully and I will report on what I discover in future blogs. In the meantime, I do intend to have a series of two thermograms to establish a baseline that any future changes in my breast tissue can be measured against. The thermogram satisfies my final principle: “if a treatment causes no harm whatsoever and I want to try it, then it is fine, even if there isn’t conclusive scientific evidence for its effect on cancer.”

I’m not 100% sure of any of this and I am certainly not making recommendations about what anyone else should do. For now, it’s what feels right for me and I’m being consistent with my principles and priorities in making my own health choices.


Jim says:

your decision making process in regard to follow-up of the other breast is the most well-researched and carefully considered i have seen anywhere. given the fear factor, which i believe is a major consideration in cancer prognosis, it seems like as near a perfect decision as could be made. i do hope others will follow your process,even if they come to a different conclusion. It seems so sad that oncologists and other MD’s cannot help a patient to think through a problem the way you have done. KUDOS….

Jean D. shepard says:

I am going to call you Doctor Gyata, from now on–I am in awe of your wonderful research, you are gifted with great logic and faith. I will add my prayers to your on-going healing. Peace and Love-

Gyata says:

I’m happy you’re reading my blog and finding it helpful. But please, no doctor! Many of us have us have given over our right to say “yes” or “no” to medical authorities, believing they must know best. As I say in yoga class, “you are the expert on your own body”. We all have the power to read, research, talk to others and our medical providers, and come to our own decisions.

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