Five Things I Wish I’d Known When I Was Diagnosed with Breast Cancer

Worried about the serious consequences. Debica, Poland

Anyone who has had breast cancer will tell you they remember where they were when they got the news, but little else about what their doctor said immediately afterwards. I’m no exception. I was celebrating my 45th birthday—my kids were 10 and 12 and we’d recently moved from Maryland to Texas. There was no family nearby, and I was only just beginning to make new friends. It felt like the end of the world.

It’s been eight years since the day I was diagnosed with breast cancer. Looking back, there are a number of things I wish I’d known at the start of my journey that would have helped me to better navigate my way, especially as a mom with two young sons. Here’s a list of suggestions for other moms who are newly diagnosed or in treatment. I hope it helps you, or someone you love.

1. Tell Your Kids A Truth They Can Understand. 

Kids figure stuff out, and the more you try to hide something, thinking you’re protecting them, the more it can end up doing the opposite. I didn’t want to hide my illness, but I also didn’t want to scare my sons, so I only told them what I thought they could handle: that I had something called cancer, that you can’t catch it, and that my doctors were helping me to get rid of it. I also explained that it meant I was going to have a lot of appointments, and some days I might be more tired than usual, but their father and I loved them and we were here, as we always are, to take care of them. Talking to them actually helped me as well—I knew I had a job to do and goals to keep.

Someone suggested that the radiation process can be demystified by taking your kids to see where it’s going to take place. I did—they met the doctor and the radiation technician who gave them a tour. By the time they were done, they thought the machine was totally cool and interesting and I wondered if I had budding scientists on my hands (no on that, btw).

On days when I needed more down time, especially after the surgery, and when the radiation caused my skin to burn, we watched movies or cartoons or played games together. It went from potentially being scary seeing your mom so tired from an illness, to thinking, Oh, we know what to do, and we can help!

2. Make Your Evenings Cancer-Free.

 After news of my cancer reached family and friends, the phone began to ring, especially at night. It’s when most people catch up, right? Trouble is, that’s when my kids needed me most, and I needed to think about “it” least. I also didn’t want my sons to see me holed up in a room, or overhear me answering questions about my illness.  Mostly, I wanted to end the day feeling upbeat—doing things we normally would: after-school activities, homework, dinner and bedtime routines. So I made a rule: I didn’t talk about the cancer at night.  I went from dreading the phone ringing to letting it go to voicemail in 0 to 60. And though it was hard to tell people this—after all, they meant well—it was liberating.

3. Take Some Time To Weigh Your Options.

 A diagnosis is only the beginning of the journey, and you have to learn to be your own, best advocate along the way. This was a sobering truth for me: that my course of treatment could only be recommended — the hard decisions were mine and mine alone to make.

In order to make those hard decisions, you need to be well-informed, and you can’t be well-informed until you step back and research your options. Take notes, make calls, make appointments, and ask lots of questions, even if you’d rather pretend it never happened. When I got the news, I thought I had to run as fast as I could to get the cancer out of me. It wasn’t until I met my surgeon, who told me it was okay to slow the process down a little (just how little depends on the type and stage of cancer), that I truly began to understand the difference between an emotional medical decision and an informed medical decision.

4. Know It’s Not Your Fault. 

It’s weird how your mind plays tricks on you when you’re down.  After my diagnosis, I thought perhaps I’d done something to deserve it, something to cause the cancer. This was magnified by the number of people (including strangers in waiting rooms, and people I knew well) who told me about how they felt breast cancer was brought on by stress. That it was self-induced.  I suppose in retrospect this theory helped them distance themselves from cancer—gave them a sense that they could control what felt out-of-control, and provided them with a sense that they wouldn’t get it too.  It’s certainly a theory. But it’s a theory that carries with it the powerful implication of blame and shame.

I’m here to tell you, we do not cause our own breast cancer. It’s not payback for something we did in our past. We are not bad people. We are not jinxed. There are many unavoidable causes of stress in life.  It’s part of life. Yes, some of us more tightly wound than others—our differences are what make the world go round.

5. Schedule Treatments So That You Have Something To Look Forward To Afterwards. 

The size of my tumor put me on the border for needing chemotherapy. The decision of whether or not to have it came down to statistical outcomes, and my gut instinct. No doctor would tell me what to do—that became very clear, very quickly. In the end, I opted for surgery, six weeks of radiation, and five years of the drug Tamoxifen.  To make sure I didn’t come home from radiation therapy feeling sorry for myself, I scheduled my weekday appointments an hour before I picked up my youngest son from school.  He was the best medicine — one look at his face when he saw me, not to mention his loving hug, well, I couldn’t have asked for anything more.  Each day I picked him up, another round of radiation was behind me.

6. Ask For And Accept Help.

 I’m terrible at this.  I think a lot of moms are. And my husband, like a lot of men, isn’t by nature a nurturer. People did ask me to let them know if I needed anything.  Trouble is, when you’re going through something you’ve never gone through, you don’t always know exactly what you’ll need, until you need it most, and you’re sitting there all by yourself.  I think the best help is the kind that just happens: the person who says, I can pick up your son and bring him to the game, or I’m dropping off some dinner and won’t stay but open the door at 5 o’clock, okay? Or, I’m coming with you today to radiation, I’ve got “People Magazine” for us!

There were days I was bone tired, or sad, or lonely, or all three, but thought I should be able to keep up and life should continue as usual. The truth is, life wasn’t as usual, and I am human, and humans need humans.

And it’s not a sign of weakness to ask for help, or to accept it.

7. Just Say No To People Who Want To Tell You Cancer Stories. 

I don’t know what it is: perhaps people feel as if they are relating to or bonding with you when they tell you stories about people they know with cancer. I think they really and truly mean well, but I have to say, unless you ask to hear these stories, it’s not always helpful. For me, even the positive stories were hard to hear — I mean, how do you live up to a success story when it’s not always in your control? What I really needed was for them to listen to my story, without judging.

8. Just Say Yes To A Mantra.

 I thought mantras and deep breathing techniques were all New Age and goofy until I realized I spent a considerable amount of my waking moments holding my breath. Literally holding my breath.  So I came up with a couple of mantras and visuals which I used to help me get through my journey. My favorite visualization was chocolate, and later it became an actualization—I ate some when I got home. What can I say?  I’m shallow that way.

Truth is, I’ve never heard anyone on their sickbed say they were craving Brussels sprouts, and as much as I like them, visualizing one won’t take me to my very own happy place, regardless of how much creamy dressing I pile on.

So it wasn’t the end of the world after all, just the end of the world as I knew it. I’m still here, eating chocolate, applying many of the lessons I learned to my day-to-day life, and watching my boys become men.

When I was diagnosed with breast cancer I was shocked. I’ve always been a healthy person, so I didn’t expect it. I felt like I’d been sideswiped. The thing I feared most was that I would miss being a part of your futures.A upport during the tough times and share what I learned along my journey back to good health. I pray that you never get any type of cancer, but if you ever did, perhaps this advice would help you through it and make it less frightening. In fact, I hope it will help all women.

It’s important to get a second opinion.

When my doctor called to give me the news, I asked, Will it kill me? His frighteningly cavalier response of Well, it’s cancer sent a chill down my spine and made me realize that I needed to advocate for myself. My first step was to get a new doctor! You have to trust your gut and know that not all doctors are created equal.

Mammograms aren’t perfect, so stay alert.

As you know, my cancer didn’t show up with a mammogram. I felt the lump. My doctor said it was fibrous tissue and I was happy with that, but then, over several months, I noticed it was getting bigger and I said so. When they biopsied the lump they discovered it was malignant. I never thought it would happen to me, but I’m glad I was persistent about it because early detection opened up a whole world of treatment options I wouldn’t have otherwisehad.

There may be more options than you think, so get educated.

The only choice I thought I,d have was a single or double mastectomy, so I was pleased and surprised when my doctor said I,d be able to have a lumpectomy followed by targeted radiation, then chemo. After considering all the options I selected five-day partial breast radiation (brachytherapy) instead of a longer six-week course. For me it was critical to get through it quickly and know I had one part of my treatment out of the way. Getting the right treatment is the key to survival.

It takes a village.

A friend of mine and cancer survivor told me about the University of California San Diego and recommended Dr. Ann Wallace, the surgeon who did my lumpectomy. Dr. Wallace collaborated with Dr. Cate Yashar, the radiation oncologist, and Dr. Schwab, the chemotherapy oncologist. Collaboration between doctors is key, so it,s good to find people who work well together.

The support and love of family is everything.

I want to thank you both for supporting and encouraging me through “our” breast cancer battle. Kara, I remember you coming down from LA and spending the entire day of preparation and surgery by my side. Your being there eased my stress immensely. Krista, you were there with me through so many chemotherapy infusions making sure I was comfortable. You gave me great comfort and strength. Your dad too was amazing. In a family like ours, we journey together through times like these. Your love got me through it.

I hope that you take good care of your precious bodies, get mammograms, do self-exams and pay close attention to any changes. I am so grateful that I have survived and that I am now healthy so that I can enjoy sharing your lives with you.  You amaze me every day. I am looking forward to spending another Mother’s Day with you both!

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