JPG Magazine: Stories: Feature Story: Breast Cancer or About How Not To Trust Doctors Too Much

Breast Cancer or About How Not To Trust Doctors Too Much

By Mojca S.

2 May 2008

A few years ago I discovered a small lump in one of my breasts. I immediately went to the doctor, and an ultrasound, mammography, puncture, and biopsy were done. I was told at the time that the lump was "benign", not a malignant tumor, and there was no need to remove it. I was scheduled for another appointment in one year for follow-up.

The year passed, and the lump grew larger, but after yet another series of ultrasound and mammography, they again concluded that it was benign and posed no risk. Still trusting them, the news made me feel happy and relieved, as if a burden had again been lifted. Nevertheless, I didn't feel comfortable, and wanted the lump removed, even though it was thought to be benign. Unfortunately, this never happened. It was as though I had been forgotten, never receiving so much as a call to set up a follow-up appointment. I imagined they believed an operation to remove a benign lump was simply unnecessary and I did my best to ignore it, as I was instructed to do. Another year passed without any word from them, and by this time I could no longer ignore it. I visited a different doctor, to get a second opinion. His opinion was not merely a "second" opinion, but was also a profoundly different one. His tests revealed that this "benign lump" had in fact developed into a malign tumor, and had grown so large and, located in the center of my breast, left no option but a full mastectomy. Following the mastectomy, I underwent months of chemo-therapy, experiencing months of sickness, weakness, anger and depression. Losing all my hair in the process paled in comparison to the other side effects. The good news was that my visit to the second physician could not have been more timely, because it was caught before it had metastasised, and my prognosis was good.

I learned later from my new doctor that the cancer likely began with that first puncture, years ago. The tumor was quite small, and it was missed, striking healthy tissue. It was there that the cancer probably began. They also felt that the mammography was ill advised, given my age at that time (too young), and to make matters worse, it was performed twice. Mammograms of women under the age of 40 usually don't reveal the true picture, because the mammary glands are still active. The procedure in these cases is widely regarded as "useless." That was certainly the case with me, on both occasions it was done. Additionally, I have a family history of cancer, which they knew at the time I first presented. Given the totality of circumstances, a prudent physician would have scheduled me for check-ups every three months. I was contacted once a year. And then, I wasn't contacted at all.

That this happened to me is unfortunate. That it happens to so many women is tragic. It is emblematic of a medical system that abides by the status quo, following treatment regiments long practiced, but too often not reviewed for their efficacy. I was an active patient, acting immediately, despite my fears, to address the problem. Yet the end result was the same as if I had ignored that lump for years, believing as some do that "ignorance is bliss." Waiting until it's too late is not prevention. It's gambling. With your life.

I'm sharing this here because I want every woman to know what I now know. Had I known these things several years ago, I could have avoided the cancer entirely - the mastectomy, the chemo and the continuing treatments. In retrospect I should have been more assertive when I first visited the doctor, emphasizing my family history and the associated risks which made me a more viable candidate for surgical removal of the lump, while it was still benign. They responded with an argument based on the allocation of medical resources. They urged upon me the notion that were they to operate on every benign lump, they would spend all their time doing nothing but that. They had adopted a kind of medical 'laissez faire' policy, focusing on treatment once the cancer manifests itself, relegating prevention to a back seat. I doubt that, once the costs of treating advanced breast cancer are factored in, their model which prefers treatment over prevention would survive economic scrutiny. So I urge you, if you discover any lump in one of your breasts, to visit your doctor immediately, and insist on being involved in the dialogue regarding his/her plans for addressing it. Don't passively accept a recommendation that you ignore it for the time being, absent compelling evidence that this is the best course of action. Unless removal is clearly contra-indicated for sound medical reasons, explore the cost/benefit aspect of the procedure with your physician, in terms you can both understand and accept.

Important Facts to Remember

1. Don't accept at face value everything your physician tells you. Like us, they are human and make mistakes.

2. Ask for a detailed explanation of your condition, illness, and treatment options. Too often, patients are condescended to, and inherit a long-standing belief that "Doctor Knows Best", and time spent discussing the case with the patient is time both wasted and pointless.

3. In a case as serious as one involving the possibility of breast cancer, it is always a good idea to seek a second opinion.

4. If you're under the age of 40, remember that mammography rarely proves useful in arriving at a diagnosis, while at the same time exposing you to unnecessary radiation. Ultrasound is a more effective and safer diagnostic tool.

5. Be extremely wary of allowing a "puncture", especially when the lump is very small, making it difficult to target on the first attempt. And if healthy tissue is punctured in the process, this invasive technique often proves the catalyst for cancer.

6. If your family history includes cases of cancer, you should be examined every three months, rather than then the yearly check-up which might otherwise be indicated.

7. If you've been careful and persistent, and are initially satisfied that removal is not a viable option at the time, remain vigilant. If this benign tumor becomes malignant and grows to a size of 2.5 cm, despite the increase in partial mastectomies, there is still a good chance you will lose the entire breast, especially in cases where the breast is not large. Sometimes, despite the pressures brought to bear on you to be "the good" (i.e. passive) patient, you must be the one who to decide what's best for you. It's your body, your life. Trust is a good thing. But like everything else, too much of it can be a bad thing as well. Unless compelling reasons exist for doing otherwise, have it removed while it is still small.

I hope this will be helpful for some of you, and that my experience helps other women avoid what I've gone through, am still going through, because the medical establishment seems entrenched in the status quo of often inadequate means for detecting breast cancer at the earliest stage, or in treating it only when it manifests itself as a serious, and all too often fatal illness. During my hospitalization, chemo, and in speaking with other women about this, I've learned of far too many cases like mine. I want you to be fully informed, to know what you can expect. I'm still in a state of shock, my life tied to a routine which requires monthly treatments which curtail my love of travel, remind me I am not the person I was just a year ago, and can never be again.

One out of 8 women will develop breast cancer. The medical community will continue to make more mistakes than advances in their approaches to treatment and prevention, despite the mounting evidence which suggests that not enough is being done to combat this terrible illness. Physicians face hard choices, with the growing demand for their services, and economics can't be ignored. But doctors are spending too little time with their patients, failing to engage them fully in their own care, and important information, potentially life-saving information is either overlooked, or never elicited. I've lost faith in the system. I invested my trust in a doctor once, fully and without reservation. No more. Regarding my health, I have only faith in myself now.

If any of you have questions, or just want to talk about this, please don't hesitate to contact me.

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