Things I Wish I Knew Before Breast Cancer

Before being diagnosed with breast cancer, I rarely gave cancer much thought. Sure, I’d had lots of friends and family members who’d received the bad news that they had cancer, but until the first one passed away, I assumed treatment would help them get better again. I was so naïve.

When the stark reality of cancer hit me square in the face, it knocked my rose-colored glasses off. As I heard the words, “You have cancer,” over the phone one July afternoon, I realized that I didn’t know much about cancer at all.

Over the past eight years, I’ve learned a lot about everything cancer related. Much of that learning has come from personal experience, but some has come from talking with other survivors, searching the internet, reading breast cancer books and attending support groups.

Here’s a list of some of the most treasured advice I could give to a newly diagnosed person:

1. Nothing can prepare you to hear the words, “You have cancer.” Those words are devastating and shocking. They’ll take time to process and accept. You will experience a gamut of emotions, and it’s important to give yourself time to process each one in your own time and in your own special way.

2. You’ll find yourself on an emotional rollercoaster at times. When I first learned I had cancer, I wept uncontrollably for hours. When I finally pulled myself together long enough to tell my husband, we wept together. We didn’t fully understand what we were crying about. We knew there would be a very long, uncertain road ahead, but we had no idea where it would take us. After the tears came anger. I was angry over something I couldn’t control. I felt betrayed by my body and didn’t understand why, after years of eating healthy foods and taking good care of it, it had become diseased. I wish someone had told me to ask the doctor for an appointment to go over the tests instead of receiving the news via a phone call.It would have been much easier to receive the news with a loved one close by for moral support. Instead, I was alone.

3. Sharing the news is hard. Telling others that you have cancer is extremely difficult. Not only will you be sharing very personal information, but you’ll also be facing another’s opinions and grief. I wish someone had told me I didn’t have to tell all my family and friends right away. Looking back now, I would have chosen to tell only my immediate family for the first few weeks after learning the news. Everyone seemed to have an opinion on what I should or shouldn’t do and listening to those made a difficult situation even more challenging.

4. You have some time to ask questions and review information. After learning of your cancer diagnosis, there will be many decisions to consider. While time is a mitigating factor, there’s no need to rush. You’ll want to discuss options with your doctor and with loved ones. Treatment options can seem overwhelming. Your medical team should explain ones that pertain to your specific case.

5. You have the right to make the final decision. Your medical team will recommend various treatments for your optimal care, but you are the one who must decide what is right for you. Immediately after diagnosis, I was told my treatment plan would include chemotherapy, radiation therapy and adjuvant therapy. After doing research and weighing the information provided by my doctor, including test results from the Oncotype DX and FISH, I decided chemotherapy wasn’t something I wanted to do. I felt it would do more harm than good, so I refused that part of the plan. The doctor wasn’t happy with my choice but accepted it.

6. You’ll be forced to face your mortality sooner than you’d planned. A cancer diagnosis is the perfect catalyst for causing one to think about death and while we all know that one day we’ll die, it’s not something we like to think about.

7. Googling is dangerous! When a person is diagnosed with cancer, it’s natural to seek information and the internet is full of it, but I wish someone had told me to avoid it like the plague. When I searched online, I would get lost on the internet for hours and I wasted a lot of valuable time. The knowledge I gleaned didn’t change a thing and didn’t make me feel any better.

8. There’s no room for modesty with breast cancer. I’ve always been a very modest person but right after diagnosis, I was baring my chest to more people than I ever imagined. Of course, the medical personnel did their best to offer privacy and respect, but it didn’t always happen. There were times when I’d be on an exam table, breast out, waiting for a test, and someone would enter the room without advance notice. As I went through more and more procedures, I finally came to grips with the fact that my breast was no longer my own and it would be viewed by many. That didn’t make it easier, but I learned to accept it.

9. A sentinel node biopsy is extremely painful! If I’d known what to expect ahead of time, it might have made the test a little easier to endure. Even though I was told by the technician that I might feel some pain, I wasn’t expecting to feel as much as I did. Even with a high pain tolerance, I was unprepared. The topical numbing agent didn’t penetrate all the layers of tissue. When the biopsy was taken, it felt like my nipple was being pierced by an ice pick. It would have been easier if I’d been fully sedated.

10. The physical side effects of breast cancer surgery are long lasting. I wish someone had told me to expect problems after surgery. I had no idea I’d deal with scar tissue, cording, numbness and lymphedema. While those problems don’t occur after every case, they did after mine. I went through physical therapy to help with breaking up scar tissue and cording. I saw a certified lymphedema specialist to learn ways of managing lymphedema, but eight years post-surgery, I still have numbness in the area of lymph node removal. Lymphedema is a lifelong condition. It is manageable, but will never go away.

11. Cancer will affect your body image and self-esteem. I wish I’d known more about how physical changes would affect my body image and self-esteem. I look at myself differently in the mirror now. It’s taken a long time to accept the changes breast cancer made to my body. Instead of seeing the ugly scarring and the loss of my breasts, my perspective is different. Now, I focus on the fact that I’m still alive and I’m grateful for that.

12. Scanxiety is a real thing. Becoming anxious when it’s time for PET scans, CT scans, MRIs or other tests is normal after a diagnosis with cancer. It’s scary to think about what the tests might reveal. Almost every person affected by cancer has experienced scanxiety at one time or another.

13. Cancer teaches surrender. I’ve always been a typical type A personality: a high achiever, a planner, someone always in control, but cancer taught me I had to surrender. There were things I couldn’t and shouldn’t try to control. I learned that lesson the hard way as I struggled to maintain control over many things during treatment and afterward. I wish someone had told me to just let go.

14. You’ll have good days and bad days. I wish I had been told there would be good days and bad days after diagnosis. Right after surgery, as treatment was about to begin, I found myself facing more bad days than good days, but as time went on, the bad days seemed to lessen. Today, I have many more good days than bad days.

15. Healing takes time. Healing takes a lot longer than expected. There are emotional scars as well as physical ones and both take time to heal. The emotional scars are the ones that take the longest to recover from, but they will heal eventually.

16. The fear of recurrence will always be with you. No matter how far out from diagnosis you become, the fear of recurrence remains a niggling fear in the back of the mind. It’s important to pay attention to that fear, but you can’t let the “what ifs” kill you. They can steal your joy and prohibit you from living your best life now. I wish someone had told me to take one day at a time.

17. Family, faith and friends are vital to the fight. I wish someone had told me how much I would need to lean on my family and friends as I was going through my cancer journey. Their love and support helped me in more ways than I ever imagined. My faith was an integral part of healing. Without it, I doubt I’d have survived eight years with no evidence of disease.

18. Mindfulness is good medicine. I wish I’d been told to spend more time practicing mindfulness. If I’d known the importance of being present in the moment, I would have been able to process each event more effectively. Now I make time to meditate, rest and restore because I know it is good for mind, body, and soul. I especially have enjoyed using the Untire app, a phone app specifically designed to help beat cancer-related fatigue.

19. Your journey is yours, do it your way. I wish I’d known that every cancer journey is unique and there’s no right or wrong way to do it. Fighting cancer is hard and everyone has their own way of muddling through it. You may receive suggestions on what to do and when, but the choice is yours. No one knows or understands your body like you do.

20. The power of positivity is the vital key to fighting cancer. Learning you have cancer is one of the most devastating things a person can ever hear and often, that terrible news is accompanied by a lot of negativity. Negative thoughts, feelings and emotions, while often normal during a cancer journey, can quickly become overwhelming and cause a person to spiral into deep depression. I wasn’t expecting to face negativity as I battled cancer, but I did. If I’d known one of the best ways to combat those feelings was to counter them with positivity, I would have used the weapon more often. Today, I know better! Whenever a negative thought pops into my mind, I immediately counter it with a positive one. This has helped change my perspective and now I can say I’m not only a cancer survivor, but a thriver.

If one of the lessons I’ve learned can help someone else, I’ll be thankful. Fighting cancer takes determination and courage. Those who’ve already conquered the fight want to do whatever possible to make the next person’s experience a little less painful and frightening.

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