"Cancer doesn't grow like that," Elizabeth Vines' doctor told her after she went to see him about the rapidly growing lump in her breast. Two months later, she learned she had stage 3 breast cancer at age 35.
This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
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. A month later I saw my family doctor for something unrelated and figured, “What the heck? I’ll show him.”
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. 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. I called my doctor’s office and asked to set up an appointment when I got back.
So I got back and he 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 really think I needed it. So I left there 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 doctor 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 set up. Between the doctor and the receptionist, they were acting like I was a hypochondriac, like I was wasting their time. “Well, he says you don’t need it, but...” Comments like that. Normally I have a really great, friendly relationship with my doctor’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. My doctor said, “Let’s refer you to a breast surgeon at the breast clinic and they can remove the cyst for you.”
I waited another three or four weeks for that consultation, and when I went to the breast clinic on November 24, they did a quick exam in the room before sending me for a mammogram. All of the sudden, everybody looked very concerned, which was really shocking, because I went there thinking it was a quick consult. 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 around for biopsy to determine what type of breast cancer it was. Two days later, I had a bone scan and a CT scan. From there I needed to see someone in oncology, which is a different department, and they said that they couldn’t see me until the new year.
My husband had already done some research on 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 talked to the local oncologist briefly and she told me while she was chewing her gum that she thought I had about two years left to live.
I remember coming home, walking straight down to the bedroom and curling up in bed. I was sort of in a delirious state. AlI 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 said to him, “What’s different in Arizona? Nothing.” That was my mentality.
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 than 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 basically told me that I was going to 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.
Originally, back home, they had diagnosed me as Stage IV, because they thought the 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.
[Editor’s note: According to Mayo Clinic, “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. When we first found out how much it was going to 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 website of the manufacturer, 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 and filled them out and faxed them in, and Mayo Clinic filled out their portion. A couple of weeks later, I got this random phone call from a rep at Genentech’s Access to Care Foundation saying that they had approved me.
When I told them I 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, and my last one was actually on my son’s fifth birthday. My nurses remembered and brought him a cake and everything, which was very sweet.
After discussions with my doctors, I ended up having a single mastectomy with immediate reconstruction at the same time. (I had a preventative mastectomy with reconstruction done on the other side a year later.) 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 all your doctors are pretty much saying that the worst is over, you’re kind of on a bit of a high.
My biggest worry was actually a few weeks after I finished my treatment. Because, like 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 worry every time I had a headache or a 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. I'm currently cancer-free. I get a little nervous saying that, but as far as my cancer coming back 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 doctor 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 that I had cancer. But he never came right out and said he made a mistake.
You kind of learn to trust doctors and not question them. But now I’m the opposite. If I want something from a doctor, like a referral, I don’t give up on it. I’m not gonna take no for an answer.