‘It’s Go Time’: A Patient With Metastatic Breast Cancer Offers Advice on Taking a Step Back, Learning More About a Diagnosis

CURE Speaking Out | <b>Starting the Dialogue for Metastatic Triple-Negative Breast Cancer</b>

As part of its CURE Speaking Out video series, CURE spoke with Jessica Storm, a patient with metastatic triple-negative breast cancer, about learning of her diagnosis and her advice for others based on her experience.

Kristie L. Kahl: Can you tell us what led up to your diagnosis?

Jessica Storm: Originally, in May of 2018, when I was 20 weeks pregnant, I was diagnosed with stage 2 triple-negative breast cancer. I ended up giving birth to a beautiful, healthy, now 3.5-year-old, crazy little girl, Jocelyn. I did all the standard triple-negative treatment while pregnant. And then, literally a week-and-a-half later, after giving birth, started up again and did surgery. I was declared no evidence of disease. That was November of 2018.

But then in August of 2019, is when I started having really odd headaches, and I'm not a headache person. So that was not normal for me. But I do have a very busy, a very full life. So, I thought maybe it was just because I'm stressed out or just so busy. But my medical team and I decided to do an MRI, which then led to finding a golf ball size tumor in the back of my head, which then led to surgery and was declared that I have metastatic triple-negative breast cancer.

Kristie L. Kahl: What ran through your head when you heard your disease was metastatic?

Jessica Storm: Oh, gosh, so many emotions. You know, I kind of live in la la land in a sense. You know, when I got first diagnosed that was go, go, go, right. I'm pregnant. I didn't really care about myself as much as I cared about the baby. But now I had Jocelyn. And so hearing that it was staged 4 breast cancer, I immediately thought I was going to die. I immediately thought, “Oh, well, this is it.” But then I also thought, “Oh my gosh, this has got to just be a hiccup in this plan.” Thankfully, (my health care providers) were really confident in the plan. So that that gave me confidence.

But it was just a lot of emotions. Because it wasn't (like my original diagnosis. Like I said, I was surviving to get Jocelyn out of me. And then now it was like, I have to live, like I need to see her go to kindergarten one day. So yes, it's very devastating. You hear initially, but then you've got to come to realize it's go time again. It just looks different.

Kristie L. Kahl: What did you do to learn more about your disease and your treatment options?

Jessica Storm: Right away, I didn't do much. I didn't know what to do actually. Like I remember getting the phone call after brain surgery that it is triple-negative, metastatic, has gone to the brain, which was just a whirlwind because I only had stage 2, no lymph nodes. It was hard to understand. Like, how did this happen? That was legit the first thing I said, probably a few expletives in there. But it was really like how did this happen? I didn't even have any lymph nodes and what I had read on the internet, it just seemed like this was weird.

So I had to process how that happened. So it was kind of over time, I then started looking into different websites and because it's hard to find somebody like me, sometimes I feel very alone because I just have one brain met and I'm so grateful. So when I say that I'm alone, I'm actually kind of grateful that this is my my story. But it's hard to find people like me so I just kind of went to the internet or Instagram and hearing other people's stories. Stage 4 makes you realize, I'm still processing that. There is not exactly a finish line like there was before. And that takes a lot of time to process.

Kristie L. Kahl: Do you have any advice for other patients with metastatic breast cancer?

Jessica Storm: Don't forget to take a breath. I felt like so go, go, go, go, go. it's okay to take like a week. I've learned that from other women, listening to them. (That was) kind of an aha moment I had for myself just a few weeks ago. I have been the passenger of my own car for three-and-a-half years. Now, it is time I take control, a time that I am driving my own car here. And so I had a meeting with my doctor. I was like, this is how I'm feeling and how can you build more confidence in me? I need to be more confident in my plan.

My other advice would be if you're ever feeling that your medical team isn't confident in a decision because I have gone through that, then bring in another medical team. I have called a more larger hospital to come in and see what their thoughts are about these scans. Because I have been in a situation where (I have asked) is this is a reoccurrence from the same spot? Or is it just scar tissue? I've been dealing with that for over a year. And so there has already been twice now that we've kind of brought in a larger hospital for their opinion. And if something isn't sitting right with you, then go seek another opinion.

If you are going to go online, make sure you're finding a reputable website and limit your time on that. If you feel yourself going down the rabbit hole, then stop, go fold some towels, go do some dishes. Close the laptop, close it on the phone. Be very careful about who you are seeking advice from.