Breast Cancer Misdiagnosed as a Cyst

In February 2014, I felt a pea-size lump in my breast, close to my armpit area. I found it randomly, and I was shy about it at first; I didn't know if I should say anything. Then, a month later, I saw my family healthcare provider for something unrelated and figured, "What the heck? I'll show him."

Diagnosed With a Breast Cyst

He didn't even really look at it. He was like, "I wouldn't worry. You don't have any family history. You're young." I was 35, so I took that at face value, and the lump stayed the size of a pea until about September 2014. Then it started to grow rapidly.

My family and I were on vacation in Maui (my son, Jack, was four at the time), and my husband started getting very concerned. I could tell he didn't want to scare me, but he was almost insisting that we go to a hospital in Hawaii to have it looked at. So I called my healthcare provider's office and asked to set up an appointment when I got back.

So I got back, and my healthcare provider took a look at it and said, "It's in no way cancer. Cancer doesn't grow like that. It's just a cyst." I asked him what the next steps were, and he said, "Well, you could have an ultrasound," but he didn't think I needed it. So I left without anything booked, and I began thinking about it a couple of days later. I started to get a little worried. By then, the "cyst" was half the size of a lemon. You're trying to trust what the healthcare provider tells you, but at the same time, you have this feeling in the back of your mind that things aren't quite right.

I called his office and asked to have an ultrasound for the breast cyst set up. Between my healthcare provider and the receptionist they were acting like I was a hypochondriac and like I was wasting their time. "Well, he says you don't need it, but..." Comments like that. I normally have a great, friendly relationship with my healthcare provider's office. That's why I think I trusted him so much.

I waited about three or four weeks for the ultrasound. It came back as all "cystic components," meaning it wasn't cancer. So my healthcare provider said, "Let's refer you to a breast surgeon at the breast clinic, and they can remove the cyst for you."

Learning the Breast Cyst Turned Out To Be Cancer

I waited another three or four weeks for that consultation, and when I went to the breast clinic on November 24, 2014, they did a quick exam in the room before sending me for a mammogram. Suddenly, everybody looked very concerned, which was shocking because I went there thinking it was a quick consult. So I figured I'd stop in and go Christmas shopping afterward.

They did the mammogram and brought me back into a room, and told me right then that I had cancer. I was a bit argumentative, saying, "How do you know without doing a biopsy?" And they said, "We can tell by the patterning of the cells." They told me it was a 12-centimeter tumor.

I waited for a biopsy to determine what type of breast cancer it was. Then, two days later, I had a bone scan and a CT scan. From there, I needed to see someone in oncology, a different department, and they said they couldn't see me until the new year.

My husband had already researched other big hospitals, and we decided to go to Mayo Clinic in Arizona since we have family there (we were living in the Seattle area when I was diagnosed). The day before I left, I briefly talked to the local oncologist, and she told me while chewing her gum that she thought I had about two years left to live.

I remember coming home, walking straight to the bedroom, and curling up in bed. I was sort of in a delirious state. All I could think about was whether I wanted to be buried or cremated. My husband kept saying to me, "Who cares about her? We're going to Mayo Clinic. Things are gonna be better." I told him, "What's different in Arizona? Nothing." That was my mentality.

Beginning the Treatment Journey

Everything changed as soon as we got to Phoenix and walked in the hospital door. The way they spoke to me and the way their attitude was toward me—everything was exactly the opposite of at home. I saw the surgical oncologist first. He gave me an overview of everything that was going to happen and turned me over to oncology because tumors over five centimeters required chemotherapy before surgery.

The oncologist didn't think I had another day to waste before starting chemo—he thought I probably had cancer for at least nine months by then. He told me that I would be in for a rough year but that there would be a light at the end of the tunnel, which is what I wanted to hear.

Initially, back home, they had diagnosed me with stage IV breast cancer because they thought cancer had spread to my liver. But when I got to Mayo Clinic, after they looked at all the imaging, they thought within 90% certainty that it was not cancer on my liver and downgraded me to stage IIIB. But we were still waiting to find out whether the cancer was a type known as HER2-positive.

According to MedlinePlus, a resource of the National Library of Medicine, HER2-positive breast cancers mean that there are high levels of human epidermal growth factor receptor 2 protein (HER2 protein). Too much HER2 tends to cause cells to divide, grow, and spread faster.

"HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells…[it] tends to be more aggressive than other types of breast cancer.

The plan was for me to have two chemotherapies once every three weeks for six sessions. But two sessions into that, my HER2 test came back positive, and so my oncologist added in Herceptin and Perjeta, which he called "anti-HER2 therapy".

Chemotherapy went from $1,400 per treatment to $56,000 with the anti-HER2 drugs. At the time, we didn't have insurance; we were completely out of pocket. So when we first found out how much it would cost, I said, "We should just go home, that's it." My husband, God bless him, said, "No, we're not going home. We'll mortgage our house. If we have to sell our house, we'll sell our house."

I looked Perjeta up online, and there was a link to the manufacturer's website, Genentech. The link said if you don't have insurance, they may cover the cost of their drugs, including Herceptin. So I printed the forms, filled them out, faxed them in, and Mayo Clinic filled out their portion. Then, a couple of weeks later, I got this random phone call from a Genentech's Access to Care Foundation rep saying they had approved me.

When I told them I had already paid for four treatments—because my first dose of the anti-HER2 drugs was a double dose—they said, "We'll backdate it." So I still paid the $1,400 per treatment for the based-chemotherapy, but they paid for their two drugs. It was incredible.

I did my six treatments; my last one was on my son's fifth birthday. My nurses remembered and brought him a cake and everything, which was very sweet.

After discussions with my healthcare providers, I ended up having a single mastectomy with immediate reconstruction at the same time. A year later, I had a preventative mastectomy with reconstruction done on the other side. Then I did six weeks of radiation, after which I moved back home. Because I was HER2-positive, I had to continue my Herceptin treatment for another year, which meant returning to Arizona every three weeks for three days at a time. But I felt extremely positive. Once you start getting hair growing back and your healthcare providers are saying that the worst is over, you're on a bit of a high.

Life After Treatment

My biggest worry was a few weeks after I finished my treatment. Because, as I said to my oncologist, who's a good friend of mine now: When you're on chemo, you have the security of seeing your whole medical team every three weeks. That makes you feel like—How could anything be going wrong? Things can't grow on chemo. And then you finish treatment, and you're just done seeing everybody. It's scary. The first two years after treatment, I had a lot of worries every time I had a headache or stomach pain or anything.

My oncologist told me that people with the sort of response I had to chemo are far less likely to have a recurrence; hopefully, that's true. As of the publication of this story, I'm currently cancer-free. I get a little nervous saying that, but as far as my breast cancer recurring is concerned: It's in the back of my mind, but I don't think about it as often as I did even a couple of years ago. It's not an everyday worry anymore.

My family healthcare provider, who misdiagnosed me, has since retired. He was an extremely nice man—he definitely tried to go the extra mile for me once he knew I had cancer. But he never came right out and said he made a mistake.

You kind of learn to trust healthcare providers and not question them. But now I'm the opposite. If I want something from a healthcare provider, like a referral, I don't give up. I'm not gonna take no for an answer.