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February 2013 Ask the Expert: African-Americans Getting Connected, Getting Support

During the month of February, Living Beyond Breast Cancer expert Alisha Ellis, LMSW, MA, answered your questions about how to get support and care as an African-American woman diagnosed with breast cancer.

When I can get past the thought that I caused my cancer?

At what point during my breast cancer treatment can I consider myself a survivor?

How can I get health insurance, if I don’t have it?

What if I don’t like support groups? Are there other ways to connect with women like me?

I need to make a decision about radiation therapy. I appear to be in a gray zone about whether to have radiation or not. Recent studies seem to indicate to me that radiation would be beneficial, but the radiation oncologist I met with was quite dismissive of me, telling me that it would be of little benefit. Should I seek a second opinion?

Question: I'm just wondering when I can get past the thought that I caused my cancer?

Ms. Ellis: You are not alone. While I'm sure you have probably heard your medical team say that you will not be able to pinpoint any one thing that caused your cancer, the concern feels very real.  

Like many others who have struggled with that question,  it’s truly about making sense of a disease that makes little sense. Our minds tell us that if we know what caused it, we can stop it from happening again. Unfortunately, no one can guarantee the cancer won’t ever come back. Please know that if the cancer returns despite completing treatment and follow-up care, it’s not because you did something wrong. It simply happens. 

Consistently thinking of cancer can and will take a tremendous toll on your emotions. It is critical that you talk with someone about coping with this concern. Over time the concern should diminish, but it does require filling that space that may be dominated with cancer-related thoughts with other life events. 

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Question: At what point during my breast cancer treatment can I consider myself a survivor?

Ms. Ellis: The meaning of the term "survivor" varies. It’s personal and differs from individual to individual. For some, the day they are diagnosed they think of themselves as a survivor, while others only use the term once they have completed active treatment.

The intention behind the word can be a powerful tool to support you through the process. If defining yourself as a 'survivor' provides you with an added source of support, it’s completely acceptable to arm yourself with as many tools that will help you.

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Question: How can I get health insurance, if I don’t have it?

Ms. Ellis: Have you spoken with the social worker at the hospital or facility where you were diagnosed? Depending on where you were diagnosed, you may be eligible for Medicaid based on your cancer diagnosis.  

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Question: What if I don’t like support groups? Are there other ways to connect with women like me?

Ms. Ellis: Not everyone gains support from cancer support groups or support groups in general. You are not alone. Additionally, at different points in the treatment process, it may not serve you to join a group. The choice of joining a group will vary by person. While support groups may not be for or feel right to you, I do encourage you to gain support in other ways, including:

  • Connecting with another person going through treatment.  Once you inform people of your cancer diagnosis, they often provide the name of another person who has either completed treatment or is in ongoing treatment. It may be helpful to talk to people at different stages of treatment. You will be able to support them as they support you.
  • Seeking individual counseling support via a church, a social worker at your treatment facility or a social worker or therapist. This can be done face-to-face, via telephone and even via the Internet.  
  • Using existing sources of support. This may include men or women whom you connect with through an activity unrelated to cancer, such as a  knitting club, book club or volunteer group.

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Question: I need to make a decision about radiation therapy. I had 1.6 cm IDC [intraductal carcinoma]  with 7 cm DCIS and two lymph nodes positive for macrometastases removed via modified radical mastectomy and axillary lymph node dissection. Grade 3, triple positive [ER, PR and  HER2 positive]. I appear to be in a gray zone re: to have radiation or not - 1 -3 positive nodes, but ALND [axillary lymph node dissection] and mastectomy. Recent studies seem to indicate to me that radiation would be beneficial, but the radiation oncologist I met with was quite dismissive of me, telling me that it would be of little benefit. Should I seek a second opinion?

Ms. Ellis: While I am not able to offer insight about your diagnostic history, a second opinion is customary today. Your provider should not be offended if you tell him/her you want to meet with another provider before finalizing your treatment plan.

The value of a second opinion is that it will offer you greater insight about your diagnosis because you will have information from two independent sources. It’s important to consider how you make decisions and voice concerns you may have.

Write down a list of questions you have and talk with the first person who provided your diagnosis as well as the second opinion provider. While it is important for you not to put off treatment, the time invested in seeking a second opinion will ultimately provide you with greater peace of mind during a time that is often fraught with ambiguity.

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Denver, CO  ·  September 13, 2014

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