I have breast cancer. Now what?

This entry was written by Hester Hill Schnipper, chief in oncology social work at Beth Israel Deaconess Medical Center. Ms. Schnipper is a member of LBBC’s medical advisory board:

You’ve been diagnosed with breast cancer. You’re probably feeling confused, scared, overwhelmed, or all of the above. Now it’s time to start making decisions about treatment. How do you go about tackling such an important decision?

Breast cancer is a complicated disease that is almost always treated by a team of physicians, nurses, oncology social workers, techs, and other health professionals. In the beginning, it can be difficult to make the best choices or know how to best interact with your team.

How do I make the best choice?

There are almost always decisions to be made about which doctors or which hospitals seem right for you. In large cities, there are many fine hospitals, but here’s the question: where will you feel the most comfortable and best cared for?

In more rural areas, there are fewer possibilities, but you may want to consider the possibility of traveling (at least for initial consultations, surgery, and/or treatment planning). At my hospital in Boston, we often take care of newly diagnosed women who have breast surgery here and then meet with radiation and medical oncologists to decide on the best treatment plan. That woman can then receive radiation or chemotherapy closer to home.

How do I find the best doctors?

Your GYN or PCP may make suggestions and referrals, but you are not bound to those ideas. Ask around! If you can, talk with other women who have been treated for breast cancer and ask if they were happy with their care. Once you meet with a doctor, get a second opinion.

My own rule of thumb is this: “If you are considering a second opinion, you should get it. You don’t want to look back later and wish that you had done so.” You will know when you have found the right doctors. You must trust, respect, and like them. The human connection is very important, and you deserve the best possible care.

 I’ve started treatment. Now what?

Once you have begun treatment, you will discover how closely you work with your medical team. For the next months, you will see more of them than you do of most of your friends, and you will come to rely upon them for much of your support and well-being. It is smart to ask them how they prefer to be contacted. After all, who’s available 24/7? Here are some good questions to ask:

  • How quickly will someone call you back if you have a problem during the workday or in the middle of the night?
  • Does your doctor like to communicate via email?
  • What is their coverage if they are away or unavailable?
  • Do they want to hear from you about any medical concerns or should those concerns go to your PCP first?

Different providers have different systems, but you should be able to access them quickly.

 Thoughts to leave you with…

Most of the time, you’ll establish strong relationships with your healthcare team. You can maximize this likelihood by remembering the old Golden Rule: Do unto others as you would have them do unto you. This translates to being on time for your appointments, organizing your questions, being clear with your concerns, expressing your needs, and expecting that your health care team will do the same. If you are not feeling heard or well cared-for… speak up. Remember that doctors are human, too, and describing your feelings in a calm manner will reduce the likelihood of them becoming defensive.

If, for example, you feel that you are not being given time to ask all your questions, say something like: “I understand that you have many patients and are very busy. However, when I am with you, I need to feel that all of your attention is with me. I need you to answer all my questions and listen to my fears. Is there something I could do differently to make this work better for us both?”

The bottom line

 You’re hiring these specialists to provide you with care, and they should be giving you their very best. You deserve nothing less.

 How did you go about making treatment decisions? What advice do you have for women who may be struggling to communicate with their healthcare team?

2 thoughts on “I have breast cancer. Now what?

  1. I’m a breast cancer survivor and thriver. I’ve read all the books, talked to a hundred doctors – and the very best resource for all-things breast cancer related is this DVD “The Path of Wellness & Healing.” It’s a one-stop-shop with every doctor imaginable from Deepak Chopra to Susan Love and celeb survivors like Sheryl Crow and Olivia Newton-John. It’s educational, inspirational, amazing.

  2. My initial diagnosis was on Dec. 4, 2000. And yes, hearing the words, “You have breast cancer” did not exactly thrill me. However, I was extremely fortunate at the time. My Mother was a breast cancer survivor (diagnosed in Sept. 1976) and thus, knowing that there was definitely life after a diagnosis made a big difference for me. I knew, no matter what, that I was going to be okay. Yes, I had a lumpectomy followed by sentinel node surgery. Then, I went through radiation treatments and began Tamoxifen. With a stage one fully contained diagnosis, I felt quite confident. But, life happens and cancer is never predictable. In the spring of 2002, I underwent a routine chest X-ray. They discovered growths in both lungs. I had major lung surgery, losing the upper lobe of my left lung and learning five days after, that it was breast cancer. So, I went back into surgery to have a port inserted. I began chemo that summer and by Sept. 2002, my lungs were clear. But, the cancer reared its ugly head again and came back, this time to my bones. I began Herceptin and Zometa. I’ve been on both drugs ever since. I also take an anti-estrogen. Only once since then, (in 2005) have I had any other mets.
    What do I tell newly diagnosed women (or for that matter anyone with a diagnosis of cancer)? I tell them to keep a positive attitude. Trust their team of doctors, nurses and other professionals. Read the materials given to you, but don’t read information that may not be accurate. I found some online sites that terrified me. I had to talk it over with my oncologist to realize that I needed to go to sites with accurate data. You can talk your treatment options over with your family, but it’s your life. You need to make the final decisions on what you’re going to do. And that’s not easy. I made some very tough decisions — reviewing information with people I trusted, but ultimately, making up my own mind on how to proceed. And don’t second guess either. Once you’ve made a decision, stick with it. Believe in it. And believe in your team and that they are here to help you survive and thrive.
    I’m here after 10 years and several met scares. And health wise, I’m in better health now than I was in 2000. My health has become my number one priority and I live by that — I wake up each day grateful to be alive and I’m active with organizations that are important to me including the American Cancer Society.
    They tell us not to “sweat the small stuff.” That’s good advice. And, I would add — laugh a lot. Even when it hurts and even when it may not seem appropriate. You can find humor wherever you look — seek it out. Laugh as much as possible because it does help the healing process. And besides, you can’t be angry or upset when you’re laughing. It’s just not possible.

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