Breast Cancer Detection Advice and Resources.
October is Breast Cancer Awareness month and there’s no better way to learn about breast cancer than to hear from someone who’s been there. In Breast Cancer Awareness Part 1: One Survivor’s Life-Saving Warning to All Women, we met survivor Susan Leonard. We heard her story of detection, diagnosis and treatment in her own words, and we learned that she was only 44 years old with no family history and no genetic markers for the disease when she was diagnosed in 2016. Her story is scary but inspiring, and she has an important message for all women – especially those under the age of 50. “You can get breast cancer when you’re young.”
That’s why she wants to make sure that as many women as possible hear that warning, as well as her potentially life-saving breast cancer detection advice. At the end, you’ll find plenty of resources to help you learn more about this potentially deadly disease and the next steps you can take to be your own best advocate. Thank you Susan for being willing to share your story.
PTM: Are you cancer-free at this point?
SL: Yes. I have no evidence of cancer right now. I am being monitored every three months, and I receive a Zometa infusion every six months to protect my bones and hopefully prevent metastasisto the bones.
PTM: Have you made any lifestyle changes because of your experience that you consider to be working toward staying cancer free?
SL: I feel like I have. I still feel like I have more changes to make. But before I got the diagnosis, I didn’t really think about cancer. You hear all these things that might cause cancer like the microwave, heating plastic in the microwave, deodorant and aspartame. All of those things that you heard, I just didn’t think about it. If I wanted to use it, I used it. If I didn’t use it, it wasn’t because I was worried about cancer. But now, I don’t use plastic in my microwave at all anymore, and I’ve switched my deodorant to an aluminum-free kind. I’m trying to eat the super foods like spinach, blueberries, strawberries and the foods that are better for you, and I’m trying not to get as much processed food. I’m not perfect yet and it’s definitely been a process, but I’m working toward being healthier. Before I got cancer, I did walk with a neighbor. But now, I try to exercise even more, and I don’t drink soft drinks anymore. I am also trying to remove toxins by using essential oils for cleaning and medications instead of toxic chemicals and over the counter medications. I do take my prescription medications, but for routine aches and pains, I am using essential oils. In many respects though, I do still feel broken and am working on putting myself back together. I know I still have work to do, but I’m trying.
PTM: Have you had genetic testing?
SL: They did do genetic testing, but I have no genetic reason to have cancer which is great for my daughter and my sisters. But they said that Rachel should probably start getting tested earlier, even though genetically, there should shouldn’t be a reason for her to have it.
PTM: What is your life like now?
SL: I quit my job. I worked through cancer and through chemo and through the hardest part. But my dad actually died in May of this year. And I wasn’t there with him. I think if I had been there with him, I might have had a different perspective. But I was like ‘okay, I’m not going to miss anything else because of work.’ So, I quit my job, which is a great thing to do right when your daughter’s getting ready to go to a private university. It probably wasn’t the most rational decision, but it still feels like the right thing to do.
We joined the YMCA because through chemo, I gained weight. I was surprised that happened, but they told me that a lot of people do gain weight because of all the steroids you’re taking. You also don’t feel like running a marathon when you’ve had chemo, and you don’t eat the healthiest foods. Lettuce is not the food you crave when you’re having chemo. Then with all the surgeries, you’re just inactive as well. So, I did a weight loss program at Duke. It was something David and I did together so that we could encourage each other and help each other through it. We both lost a good bit of weight through that, so we’re trying to continue that lifestyle.
PTM: Is there anything that you would say you’ve learned from your experience?
SL: That you can be diagnosed with cancer when you’re young and healthy because I just didn’t expect it. I think that if I hadn’t felt the lump – the type of cancer that I had doesn’t usually grow in a lump, it usually grows like spider legs, they just kind of spread out. So, the doctors were impressed that I found the lump myself because if it had grown differently, and we hadn’t found the lump, I don’t know that I would have had another mammogram before 50 because it just wasn’t something I was worried about. I want other women to understand that you don’t have to be 60 or 70 to get cancer.
I also learned that you have to advocate for yourself. Getting the initial mammogram, I had to let my doctor’s office know that I couldn’t wait to come in, I needed to get in sooner. Then I wanted to switch surgeons to get one that better fit my needs, but I had to push for and finally insist on it. Even if it means delaying things for a while, you have to advocate for yourself.
PTM: What would be the main piece of advice that you would give to other women in terms of prevention or detection?
SL: Be familiar with your body so that you can notice if things change. I didn’t do self-checks on a regular basis, but I had done them. Also, understand that your age has nothing to do with whether or not you’re going to get cancer. I think so many people really think you’re not going to get cancer at a young age, but there are actually many young people with cancer and most of them don’t have the genes.
PTM: Is cancer at the forefront of your thoughts all the time or have you pushed it to the back of your mind?
SL: Cancer is constantly on my mind. A lot of medications that I take cause different aches and pains and just not having estrogen in your body causes aches and pains. Every time there’s an ache in a different place, I wonder if my cancer is coming back. I think about it all the time.
PTM: Is there anything else that you would like to add?
SL: I want women to know that it’s not your fault. You don’t do things to yourself, unless you’re a heavy smoker – that’s pretty obvious. I think any woman who gets any kind of diagnosis wonders ‘What did I do?’ and it’s not your fault.
Also, with breast cancer, there are so many different types and different treatment protocols – it’s not a one size fits all. Some have chemo first, some have radiation, some have a mastectomy, some have a lumpectomy. If you’re diagnosed with breast cancer, talk to doctors about appropriate treatments but don’t compare yours to someone else because what’s appropriate for them may not be best in your situation.
As Susan’s story shows, it simply can’t be said too many times. Get regular mammograms starting at age 40, no matter what, and know your body. You have to be your own best advocate, and if you even think that something has changed, see your doctor. For more information about breast cancer and to find out about free diagnostic services for underserved women, please explore the following resources.
- Your regular primary care physician or OB/GYN
- American Cancer Society – Educational information about breast cancer and research.
- The National Breast Cancer Foundation – Educational information about breast cancer and support after a diagnosis as well as a National Mammography Program where they partner with medical facilities across the United States to provide free mammograms and diagnostic breast care services.
- Susan G. Komen – Educational information about breast cancer as well as information on financial assistance and insurance and other tools and resources.
- The Centers for Disease Control and Prevention – Breast cancer statistics and information.
- World Health Organization – Information about prevention, early diagnosis and screening, and treatment.