What I Wish I Knew: Prepare for What Is Ahead

Breast cancer is one of the most commonly diagnosed cancers in American women. A diagnosis can leave you feeling unprepared for health and treatment decisions you have to make. It can also put unexpected stress on your everyday life, your family and your job.

At LBBC, we know one of the best ways to learn about living with breast cancer is by hearing from others who have been there. This blog is part of a series called What I Wish I Knew, which features people diagnosed with early-stage breast cancer in the past who want to share their knowledge with those who are newly diagnosed. What I Wish I Knew will update once a month.

A part of me always knew that I’d hear those words. I watched my mom battle breast cancer four separate times. I personally had gone through five needle biopsies over the prior 15 years… so, I knew. But knowing didn’t make the words any less impactful: “The tumor was malignant and you have breast cancer.”

Because my mom’s history made me high risk, I had thankfully received an MRI with my annual mammogram. I say “thankfully” because the tumor only showed up on the MRI. I had received an “all clear” on my mammogram. My surgeon told me in our initial meeting that I was “the poster child for MRI.” I can think of many other things I’d love to represent – but at least the cancer was caught early.

I am a type A person. Planning for everything is my norm. What I found with a double mastectomy is that you can’t plan for everything; what you don’t know will impact you at every turn. Sure I read blogs, talked to plenty of people, and bought some basics like body wipes and good, nontoxic face cleanser to use until I could shower, but I missed a few critical things.

Everyone knows when they have a mastectomy that they will have some number of drains. The doctors will say you will need them for 1 to 4 weeks. Everyone hears 1 week. Well, I ended up with drains for an entire month after my mastectomy, and for one more week after my reconstruction. I had not talked to anyone who had them for that long.

It’s a strange thing having drains. They’re ugly and uncomfortable. You really can’t hide them. When I was released from the hospital after surgery, my discharge nurse just pinned the drains to the inside of my shirt. I was concerned they might come out at any minute.

A former work colleague and survivor had sent me a hand-sewn, cloth drain holder to wear around my neck when I showered and I had bought a robe that had pockets. But once I had the drains, I realized these thoughtful gifts were nice to have, but they were not going to secure my drains, and I certainly would not be able to leave my house.

But that first weekend, a friend of a friend who was diagnosed a month before me happened to be visiting my town. She came to my house and dropped off a belt with pouches. That belt was life-changing. The belt by ELN Group is a post-surgical drain patient care kit and can be found on Amazon for $25.95.

Who knew that something for less than $26 would allow me to shower easily (using the waterproof outer pouch), sleep, move around without worrying that I would catch a tube on a dog or door, and leave my house safely without showing the ugly drainage? After getting my last drain out after my third surgery, I passed the belt along to a woman I met outside my doctor’s office who still had one drain remaining. I gave it to her because I now know that every woman going through a mastectomy should receive one of these pouches. No one should ever have their drains pinned to their shirt.

The other critical discovery I found on my journey was to make sure to purchase the right bra. It’s important so you can be as comfortable as possible. I went through times where my skin was on fire and I needed the softest possible fabric with front snaps. Jean Sachs, CEO of Living Beyond Breast Cancer, pointed me to AnaOno to buy post-surgical bras. I was wearing a bra 24/7, so having several on rotation was critical and the bras from AnaOno were really soft. Some insurance actually pays for post-surgical bras, but they were worth every penny either way.

This October will be 1 year since I was diagnosed, and I am on the mend. I am thankful for the support I received from my husband, four kids, family, and friends. But there is an element of preparedness that you can control. Hearing the words “you have breast cancer” is shocking, and living it becomes your reality. Do as much as you can, when you can, to prepare for what is ahead.

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If you are recently diagnosed and would like to learn more, be sure to check out our Guide for the Newly Diagnosed. If you want to participate in the What I Wish I Knew series, you can share your story with Living Beyond Breast Cancer.

 

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