10 Things I Learned After a Breast Cancer Diagnosis

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I didn’t know that there were many kinds of breast cancer or how obsessed people were with hair.

Patient with cancer wearing a headscarf and hospital gown looking out the window.

From learning about different breast cancer types to realizing how people were obsessed with hair, there were many lessons after my breast cancer diagnosis.

I was diagnosed with stage 1 breast cancer in 2017. I was "lucky" it was caught and treated early with a lumpectomy, chemo and radiation. I have dense breasts, and my small tumor was located back against the chest wall. It wasn't detected by palpation, on mammogram imaging or ultrasound. But when I told my gynecologist I felt some pain, she ordered an MRI which found it.

Interestingly, one of the first things I'd wish I'd known was that breast cancer can cause pain, even when the gynecologist says differently. Listen to your own body and report anything unusual. My body was talking to me.

I wish I'd known there were so many kinds of breast cancer. That was a learning curve. There was so much new vocabulary, and it was confusing and overwhelming. I tried to look up what I couldn't understand or what doctors didn't have time to explain. So, I wish I'd known that you need to be educated on your own condition. This explains why various women in my support group received different kinds of treatment.

Also, I never realized how obsessed people were with hair. “When you're going to lose it? Will it grow back? Are you getting a wig?” Ugh. Those questions got old — fast. But I still have my wig stored away. Is it a rainy-day thing? I didn’t mind wearing the scarves, but the wig was too hot for me. However, other insensitive remarks abounded, such as the medical assistant who said I'd save money on shampoo now. I was surprised, though, to learn that hair nerve endings hurt when hair was about to be released.

I also cringed over remarks about being "brave," or breast cancer patients were "heroic." I didn't volunteer to run into a burning building. I got diagnosed with a challenging medical disease. But nothing makes your day as much as someone remarking their loved one died of breast cancer.

I began to notice people's heads tilted when you told them the diagnosis news. Maybe it's an instinct, a sign of surprise. But I started to hate the head tilt. I wished people would say, "I'm sorry; what do you need?" Even if all I needed were prayers that day, it allowed others to help and for me to feel encouraged. Simple things like a text checking on me or a friend bringing banana bread were very encouraging. It's not always the big things.

After treatment ended, I didn’t know that I’d still be seeing my oncologist. I do all my checkups and scans, and now I'm glad they are on my team. I was able to do tumor retesting at five years in order to determine my prescription protocol.

I learned that we are all different. Some of us battle cancer publicly; some of us choose to be more private. I didn't want to wear pink or have all my details spread around. I told the family and friends and employers who needed to know.

I wish I'd known more about the effects surgery and radiation would have on my body image. I'm grateful for my survival, and I'm not particularly self-conscious, but maybe I would have had more realistic expectations during recovery if I'd seen some other photos. I wasn't prepared for both a scar and the shrinking tissue courtesy of the radiation, leaving me rather uneven.

I learned that you can only ask “why” so much. Then move on. The doctors might tell you the cancer was caused by genetics, or age, or weight, or hormone replacement medication. I had several risk factors. I can't change the before, but I can influence some of the after. I try to eat healthier and exercise more now. That's good for everything.

Finally, I wish I'd known that there are funny things that happen. My breast cancer surgery was on the same day as the solar eclipse. It was a memorable day, for sure.

I know now, too, that I will help others through this journey. That, perhaps, is the most important thing I'd wish I'd known — that your tribe will get you though — and then you will be in someone else's tribe, too.

This post was written and submitted by Jodi Decker. The article reflects the views of Decker and not of CURE®. This is also not supposed to be intended as medical advice.

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