Trying to make the best decisions possible when dealing with breast cancer? Here’s a framework for figuring out what questions to ask; where to get answers; and what to do with the data you collect.
You’ve been diagnosed with breast cancer and you need to make some potentially life-or-death decisions about treatment – decisions you feel woefully ill-equipped to make.
When dealing with cancer, there are many turning points – both major and minor – where you need to choose one course or another. Call the doctor about that new breast lump, or wait? Undergo expensive genetic testing, or not? And then there’s deciding between a lumpectomy and mastectomy…
What do you do?
For best results, follow these rules for good decision making.
First, don’t panic.
Give yourself time to think. A thoughtful, well-researched decision, even if it takes a week to make, will be better for you in the long run than a snap decision made out of fear.
Next, get all the information you can from your doctor
Your doctor is the best source of information about treatment options available to you, given your particular diagnosis. When you arrive at your first appointment with your surgeon or oncologist, come prepared: you’re going to have a lot of information delivered to you quickly. Bring a notebook; a tape recorder or, better yet, a friend or family member to take notes.
Don’t be coerced into making decisions on the spot; bring the information you’ve gathered home with you, and go over it with a family member or friend. Confronted with a mountain of data around each potential treatment, your first response will be to throw up your hands in despair; how will you EVER make the “right” decision? Stay cool; this is why it’s important to sift through the information with a family member or friend, someone who can keep you centered and focused on the task on hand.
Use the Internet judiciously
If you want to do further research on anything you and your doctor have discussed, the web is filled with information. But caveat emptor: not everything you’ll read is true. Choose trusted sites (American Cancer Society, National Cancer Institute, Mayo Clinic) for doctor-vetted medical information. And if you’re looking for first-hand advice and information from survivors – as well as a place to ask questions and get answers – you’re already on the right site: HealthCentral.
Decide what’s most important to you.
Cancer treatment is all about weighing benefit and cost. Take chemotherapy—is the potentially life-saving benefit it offers worth the potential lifetime of lasting side effects? Is the benefit of lowered risk of recurrence – though not a better chance of survival – worth the cost of cutting off your breast?
Some women, especially young moms, are willing to do anything – no matter how minimal the benefit – to help ensure a longer life. Others, especially older women with other health challenges, are less willing to go through the pain of treatment for what might be only a short extension of their life.
Some women know they’ll always second-guess a decision to skip a certain treatment; others know they’ll move on, no matter how their decision pans out. You know your own personality, your family circumstances, and what’s most important in your life. Decide right up front that your course of treatment will be what YOU want – not your family, friends, or even your medical team.
Now that you’ve gathered as much information as possible, it’s time to make some decisions. Your hospital probably offers a number of different options for patients needing to make difficult treatment decisions. And the best place to see the whole range of services available is through the hospital’s social services department.
This department will be called patient support services, patient and family services, or something similar. Ask at the information desk where you might find a social worker, and you should be directed to the correct office.
Access one or more of the available programs
Many medical facilities offer a service called shared decision making, where a trained professional will sit with you, go over your treatment options, answer questions, and help you come up with the treatment plan that best suits you – both physically, and emotionally.
Another option may be a patient-to-patient program that pairs patients with similar diagnoses: one of whom has finished treatment, one of whom is just starting. Connecting with someone who’s been in your shoes, had to make the tough decisions, and has already seen the results (and fallout) can be invaluable to your own decision-making process.
Make your decision – and decide not to second-guess yourself.
At last! You’ve listened to your doctor, collected data, identified what’s most important to you, drafted a friend to help sift through the information, accessed the services offered at your hospital – and you’ve made your decision. Yes, you’ll have chemo. No, you don’t feel radiation is necessary. Yes, you’ll do hormone therapy.
Your next goal: move ahead with confidence (and without second-guessing). And as the months and years go by, never, ever, EVER look back in sadness or anger if the decision you made doesn’t yield the outcome you wanted. You did the best you could with the information you had; and that’s all any of us can do.
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Breast cancer survivor and award-winning author PJ Hamel, a long-time contributor to the HealthCentral community, counsels women with breast cancer through the volunteer program at her local hospital. She founded and manages a large and active online survivor support network.
PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.