Project LEAD: Learning about Breast Cancer

Phyllis Johnson Health Guide
  • Were you a student who said, “Why do I need to know about DNA?  When will I ever use math?”  I was.  I had no plans for a career in math or science.  Struggling through genetics and equations seemed pointless.  I was proven right in most of my adult life.  Remembering that genetics stuff was handy when I was pregnant.  Knowing how to calculate how much I could save if the price of a dress was 30% off was also useful, but for most of my adult life, I didn’t use much of what my teachers tried to drum into my head in math and science classes.


    After my cancer diagnosis, things changed.  I wanted to understand what was happening in my body, and I wanted to be able to discuss treatment options intelligently with my doctors.  Reading pathology reports and medical journals required me to recall what I had learned in chemistry and biology classes.  I needed a basic knowledge of statistics to weigh the benefits and risks of treatments.

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    At the age of 50 I taught myself to read medical journals, but I still find them slow going.  I often need to read scientific research studies for the articles I write for HealthCentral, and I need to take many side trips to glossaries and search engines to understand them well enough to explain the results to our readers.  


    Last weekend, I got a second chance to learn about medical concepts and statistical terminology at the Project LEAD Workshop in Washington, DC, sponsored by the National Breast Cancer Coalition (NBCC). The NBCC offers a variety of educational opportunities for breast cancer advocates.  The workshop I went to was two and half days focused on the basic science of breast cancer and the math involved in evaluating the incidence of a disease in a population and the risk factors associated with a disease.  We also learned how to put this information into action with the cancer groups we serve.


    I won’t try to put you through a math and science crash course, but I gleaned general concepts about learning that may be useful to patients and their families who are dealing with cancer.


    Knowledge builds on knowledge.  One of the first lectures was about how cells work.  I did remember that cartoon of a cell from elementary school, and it was tempting to think that I didn’t need to pay close attention to the “simple stuff.”  However, I often found myself flipping back in my notebook to a previous diagram to comprehend a more complicated concept.  


    Doctors these days are very busy, and we may feel reluctant to ask basic questions about our cancer.  We don’t want to look stupid.  But knowing what being Estrogen Receptor Positive means in the first place helps us understand what a hormonal treatment is and whether it is worth potential side effects.  Some doctors are very good at explaining these concepts, but we may be under too much stress to absorb information in the doctor’s office.   Many doctors provide brochures and handouts about our condition.  It is important to read them when we get home.  When I was diagnosed, I used Dr. Susan Love’s Breast Book to help me understand cancer and  the treatments I was going through.  The internet can be a wonderful source for helping us understand the basics.  Here at HealthCentral’s breast cancer site, you can find all sorts of articles explaining breast cancer concepts in simple layperson’s language.  


    What you are sure you know may not be so.  We learned about new findings concerning cancer risk factors and treatments.  Many of us had to throw out cherished notions about breast cancer and the best ways to reduce cancer deaths.  It was hard to let go of long-held beliefs about topics like breast self-exams and screening mammograms.  


    As patients, we often start with a fixed position about what we will or will not do to save our lives.  We need to be open to the latest research and to ask plenty of questions about the risks and benefits.  I started cancer treatment with the idea that I would want breast-conserving surgery.  It turned out that because of my form of cancer, I wasn’t eligible for it.  We have to be flexible in our thinking.

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    You don’t really understand it until you can explain it.  The Project LEAD workshop alternated lectures with small group sessions where we discussed the material.  I found that I often couldn’t explain material I thought I understood during the lecture.  Until I struggled a bit with the ideas and found ways to put them into my own words, I didn’t truly comprehend them.


    Doctors need to allow time for patients to repeat what they think they heard.  I have found that they will when I insist on it.  I usually say something like, “Let me be sure I understand you.  Medicine X can help with this, but I need to watch for these side effects.”  Restating what the doctor said helps me remember the information and provides a chance for the doctor to correct me if I didn’t understand.


    Talking with other people helps.  By the time we are adults, most of us have firm ideas about what we are good at and about what we can’t do.  In my small group, one of the first comments was from a woman who declared she doesn’t understand science.  Yet as we worked through the study questions, she turned out to be one of the people who was best at figuring out the answers.  Working in a group helps us learn.  We find that someone else grasps a concept that eludes us and that we have a piece of information that the others need.  It is tempting to think that we can’t understand the complicated background information about our condition.  If our educational background is weak, we may need more time or more help to “get it,” but we can.


    I always advise people to take someone with them for doctor’s appointments.  As I already mentioned, the patient is under stress and has trouble comprehending what the doctor says.  The discussions with the other person after the appointment provide opportunities to clarify and expand our understanding.  After almost every appointment, my husband and I realized that we each had heard different parts of what the doctor had said.  Putting our pieces together helped us understand more.  If we couldn’t reconcile what we thought we had heard, we pulled out our reference books or made a note to ask the doctor at the next visit.


    Community builds from sharing.  One of the best parts of the conference was the opportunity to meet women from all over the United States and Canada.  We learned more than facts when we met in our small groups.  Applying our own experiences helped us understand scientific concepts, and it also helped us connect with each other.    I expect that I will expand these connections with some of the women I shared stories with over lunch and coffee.


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    Having cancer can be an isolating experience.  We don’t want to whine about our aches and pains, but when we mention them in a support group, we may learn how common nerve pain is after certain cancer treatment drugs.  We have to share our experiences to make these connections.  We have to be vulnerable with our problems to get help.  Many hospitals offer short or long-term support groups that can be very helpful.  People whose scheduling issues or personal preferences make a face-to-face support group impractical may find an online support group useful.  These kinds of groups help us learn facts, especially when they are led or moderated by medical professionals.  After having lymphedema for 15 years, I have just recently joined a lymphedema support group that is helping me not only understand more facts about my condition, but that is giving me a chance to meet others who share my struggles.


    When we are willing to share our experiences, we build a community of people whose experiences inform ours.  We find out that we can help someone else.


    If you have the opportunity to participate in a Project LEAD educational experience, I highly recommend it.  Every aspect of the workshop was organized to facilitate adult learners.  I feel much more confident in my ability to read and analyze research now.


    Watch for other opportunities to learn more about breast cancer through workshops or talks offered by your hospital or other cancer organizations in your area.  Whether you were the math whiz or the person who was daydreaming in class, it is never too late to learn the latest information about cancer.


    Project LEAD.  National Breast Cancer Coalition.  2013.  Accessed from Nov. 18, 2014.

Published On: November 19, 2014