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waking up to breast cancerThe words, “You’ve got cancer,” are heart stopping.  The words, “You don’t have cancer,” when you feel deep inside you might is heart pumping, as you are now even more alone in your suspicion. What do you do when you suspect the doctors are wrong?

As a 17-year breast cancer survivor I want to send out a warning. Tests are not always accurate, doctors make mistakes (sometimes obvious ones) and no one is more interested in your health than you are.

In 2003, two of the finest medical institutions in Southern California and my OB-GYN told me I was fine. I wasn’t. While I mentally skipped out of each appointment relieved that the news appeared good and was even more relieved when lab results confirmed their diagnosis, it wasn’t long after each appointment that my body regained the upper hand and told me something was up. A whisper here, a sensation there, a night of disturbed sleep or a “feeling” that more was going on. My body was bully-like in its persistence; everyday reminding me who was boss. But the tests were normal. Yes, but why do I still feel something is there? She said it was normal tissue. But why do I feel the area has gotten even harder or larger or more active? Finally they found the cancer again (this was a recurrence) and even when they did they failed to remove it in the first operation. I had to insist on further investigation before the whole story was revealed.

The fact is, the only thing worse than getting diagnosed with cancer is not getting diagnosed when you have it. You lose confidence in your doctors, in the system, in what you see as “the experts who have the answers.”

And the time that passes can make the difference between life and death.

I believe intuition is one key to unlocking your power to know what is going on with your body. I don’t think doctors intentionally misdiagnose, but we have to realize a lot of today’s tests are left up to interpretation. The tests are only as good as the tissue sample or X-rays that are analyzed and only as accurate as the technician interpreting the information. We all want definitive answers after a biopsy. Yes or no. No gray please.

And when you are told that what you thought might be serious turns out to be something that the body will take care of on its own, you want to relax. It is true we are all on a natural path of healing, given an immune system and internal environment that is allowed to focus on healing and is not overwhelmed by disease. And doctors have often witnessed the body’s miraculous ability to heal so being inclined to give the body a chance to mend is not uncommon or necessarily imprudent. However, there is a tipping point in every body where any disease that presents itself begins to dominate.  Of course you want this diagnosed and addressed before the disease takes over and the interventions become almost as taxing as the disease. Chemotherapy means we have to resort to measures that any sane person would recoil from…sending poison into an already compromised system. But often chemotherapy is the choice we are given when the diagnosis did not come when the disease was first present. Early detection can be elusive especially if the issue has not been brought to the attention of the doctors. Tests are less than perfect and medical advisors are not clairvoyant. Everyone is still handcuffed by sometimes inaccurate or incomplete information.

Misdiagnosis is disturbing for all involved. Clearly, doctors don’t like to err but the repercussions of the wrong diagnosis fall more directly on the patient. While any reputable doctor would certainly be upset by failing to recognize disease when it is indeed present, YOU the patient, are the one left to the gut-wrenching work of now attacking the disease. Surgery, MRIs, CT scans, biopsies, drugs and drug trials could very well be part of your future because the disease was caught later than it should have been. Because of that, YOU are the one who needs to push for an accurate diagnosis.

When you enter a doctor’s office you feel kind of special. You have an appointment. You made an effort to be there on time to see a professional about an important matter to you. It is a significant part of your day. Hopefully, not something you do everyday. But for doctors you are one in 5, 10, 20, or 30. You are important to them, no doubt, but are you as important to them as you are important to YOU? I think not.

It is hard to push for another test when the last one didn’t reveal any disease but if your body is trying to tell you something is up, listen. The body is not like a teenager with a cell phone…sending text messages for the sake of sending a text.  It is more like an overworked 50-year-old single father…it only sends a message if it is critical. The bar for sending an alarming message is very high because so much in the body takes care of itself rather effectively. So when your body sends the message… “Houston, we have a problem,” don’t let well-meaning doctors talk you out of the next test and waste time in the process. Have confidence that you aren’t a hypochondriac (unless you are!) and discuss what other options are available to you. The less invasive the better but don’t be lulled into inaction because a doctor said all was well when your body is telling you otherwise.

As someone once told me about problem solving, if you want to win a battle or be a good CEO you have to “go towards the sound of the cannons.” In many cases your body is trying to tell you where the enemy might lurk. Be brave and go toward the disturbance. The life you save may be your own.

Susan Armenti is the author of Sensation in the Night: Waking Up to Breast Cancer What You Still Don’t Know.

 

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