Who's in Charge Here?
I'm a blogger in search of an audience. I am looking for a subject that SHARE-ers find interesting and important. So this month I'm veering away from the specific NBCC MYTHS about breast cancer to talk about a bigger subject that applies to anyone diagnosed with breast or ovarian cancer. (If you want to read the Breast Cancer Myths, which are very educational, please go to NBCC's web site.)
If you do read this, please comment -- just "I read it" is enough! More comment of course is even more welcome: your story that fits or contradicts a point here will help make the subjects real and useful.
Emotional Roller Coaster.
Each of us remembers how we felt when we first got a new diagnosis of breast or ovarian cancer. I, at quite an advanced age and having had a mother who had had breast cancer, thought, "Well, it's here at last, what a surprise." But old, young or middle-aged, any person is likely to feel scared, angry, and even guilty.
Even more upsetting is a discovery of recurrence or spread to another organ, or rarely -- thank goodness -- a new and different cancer.
Often the response to a first or later diagnosis is to do what your first doctor says to do, and hope for the best.
Wrong!
It's wrong for at least Five Easy Reasons.
1. One size does not fit all. For either breast or ovarian cancer, standards of treatment vary according to type and stage of disease. For some, surgery is needed first. For others, treatment by radiation or chemotherapy first is becoming a new standard. This is called neo-adjuvant treatment and has been found by some research to be more beneficial in some cases than traditional surgery-first treatments.
2. "Surgeons cut, radiologists burn, oncologists poison, and with any luck the patient doesn't die until they're all done." There's truth in the dismal old saw: Let's face it, doctors are people, too, and different specialists may have biases towards or against one type of initial treatment. You, the person with the disease, owe it to yourself to understand how those biases might influence a doctor's recommendation.
3. Your illness is their business. Am I a cynic? Sure, a bit of one. There are many cancer centers around the country where teams of different specialists can give the best options to each individual. Anyone diagnosed should try to get to a Cancer Center.
But here's the funny part. You'll see and hear ads from Cancer Centers saying something like, "Where you are first treated can make all the difference." These centers are -- guess what --running a business. They are trying to get patients to come to them. Ironically, even with all the cancer in this country, all the treatment centers are not chock full of patients. So, this is an advantage for a patient. When you contact a Cancer Center for an appointment, keep this in mind. If you don't like how they respond to you, let them know politely that you know there are other choices.
4. Do Not Pass Go. Many people are so frightened by a diagnosis that they just want to get the cancer out, fast. But it has been there for years, usually, and a few weeks of decision-making time generally will not affect prognosis. What will affect prognosis is a complete treatment plan. So don't rush to initial treatment, take well-thought-out steps to Go.
5. SOS works. Seek help. Find cool people who can help you understand what doctors are saying or what you can read on line on the scores of websites about your disease (American Cancer Society, National Breast Cancer Coalition, National Institutes of Health are some examples). Don't choose your terrified relative because that person can make things harder for you. Sensible, unemotional folk should go to visits to doctors with you if possible, and at least discuss what the docs said afterwards, and help you clarify your choices. They should not tell you what to do, they should help you decide what to do. And don't forget to call SHARE's hotline at 866-891-2392 to talk to a survivor who's been there.
Who's in Charge Here? You are.
Posted January 26, 2010.
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— Sheyla