What I Wish I Knew: A Young Woman’s Reflections

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.

When you’re 21, most of your worries are about work, school, hanging out with friends and dating. Those were the exact topics of my thoughts at the time. Until I got sick. At first, I thought it was nothing. But then my scar tissue from an intraductal papilloma tumor removal I had when I was seventeen became inflamed. [Editor’s note: Intraductal papilloma tumors are small, non-cancerous tumors that form in the milk ducts of the breast.]

Fast-forward to the day I sat down in my doctor’s office after a biopsy, thinking they were just going to tell me that I had infected scar tissue. Because breast cancer doesn’t happen to someone my age, right?

Wrong.

Surgery

They handed me a binder explaining my three choices: lumpectomy, single mastectomy or bilateral mastectomy. I had only one week to decide and I didn’t know where to start. I wondered, “Who do I call? What will I do about work?” I was also dealing with the new reality of, “Holy crap, I have cancer!”

After my entire family finding out and all of the phone calls and texts, working the entire week, and maybe a little bit of shock, I didn’t have a huge amount of time to decide what I wanted. So I just looked at the binder, read what the options were, and decided: Why not just make sure all the cancer is gone? That was the first of many decisions I had to make, with little time, while being in a state of shock.

The day of surgery came. My doctor walked into the room and marked up my breast for what they were going to do during surgery. She marked my nipples. I had no clue they take your nipples. I didn’t find out for almost a year after the surgery that there are nipple-sparing surgery options, and even ways to reconstruct the nipples. I didn’t get to make any of those choices because I had no idea they existed until it was too late.

Fertility

One of the most important things I wish I had known about were grants for fertility preservation. Between the day I had my bilateral mastectomy and my chemotherapy start date, I was told to see about freezing my eggs. By the end of it I was very dejected because I didn’t have the money to freeze my eggs and I had no clue about other options to protect my fertility, or ways to get the money. I was left to see if chemotherapy would make me infertile. I still haven’t taken the test to see if I am, even 3 years out, because it will be so hard to deal with the answer.

Chemotherapy

When it came time for chemotherapy, I just did what my oncologist suggested because that’s what you’re supposed to do, right? What I didn’t know about were all the side effects that came with it.

In my first week of chemo I got C. diff, a stomach and digestive tract bacterial infection. It took 6 weeks to get rid of it. By my second week, my hair had started coming out in clumps, which to me was super embarrassing. The day before I shaved my head, my boss and I had been talking and I saw that he had this horrified look on his face. I looked down and in his hand was this huge clump of my hair! I heard about cold caps6 days before chemo started, but there was no way they would get to me in time for my start date.

My last chemo treatment was the worst one. I got a blood clot in my lungs and landed in the hospital for a week. 10/10 would not recommend!

Depression

Something that they mention when you get diagnosed is depression. As someone who had a harder life, in the beginning of treatment I never took it seriously. Not that I thought I was invincible or anything, but I’ve been through a lot, so why would this be the thing? Before every appointment they ask, “Have you been feeling down or depressed in the last two weeks?” I just thought, “I have cancer, of course I’ve been feeling down.”

Except after I got out of chemo, radiation and surgery, I was finally able to breathe. That’s when it all hit me. I was no longer in “survival” mode. I had time to think, to really have everything sink in, and I realized I wasn’t OK.

I asked my doctor and was given a few names of therapists, but they didn’t take my insurance. I called a few doctors I found online who took my insurance, but they weren’t taking new patients. I decided I would just deal with it on my own. I wish I had known how common depression is and that a lot of cancer patients suffer from it. I wish I had known not to feel so ashamed of telling my doctor about it when it first started.

Finishing Treatment

When you are 21 and diagnosed with a life-threatening disease, with everyone telling you that once you are done with treatment you will be normal again, you believe them. I wish I knew that isn’t what happens.  My healthcare team shouldn’t have said that. It gave me a false sense of hope.

Although I have a “new normal,” it isn’t anything like my life was before cancer. With all the side effects of the drugs and long-term effects of the disease you have ongoing appointments even after you’re done with active treatment.

I had preventive care because I had the blood clot. I was on blood thinners, which meant every week I was at anticoagulation appointments. Plus there were oncology checkups every 3 months. I had bad reactions to the preventive care, so there were more doctors’ visits on top of that. So basically, normal to them was not normal to me.

Sexual Changes

I also wish I had known about sexual changes. Barely anyone talks about it, but they are so huge! Vaginal dryness, discomfort when intimate and the lack of confidence you feel after. When I thought of cancer, sex just wasn’t something that crossed my mind. Even after I was diagnosed it was farthest from my mind.

After everything was over, I didn’t feel like my old self. I wasn’t comfortable in my new body, and there weren’t that many answers about it. My oncologist at least asked about sexual problems, but I have so many friends who were never asked, and who had to do their own research to find options. I think it should be more openly discussed so that others don’t have to feel weird or like it’s taboo to talk openly about it with their providers.

While I’m sure there are more things that many of us wish we knew, these are the ones that stood out to me the most. My hope is that this can reach someone who is newly diagnosed or someone who doesn’t know much about what cancer does to a person, to help them understand and not feel alone.