Cancer doesn’t grow like this, “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 the Misdiagnosed Health series that features stories of real women whose medical symptoms have been ruled out or misdiagnosed.
In February 2014, I felt a pea-sized lump in my breast, near the armpit area. I found him randomly and at first,
he was shy; I didn’t know if I should say something. A month later, I saw my GP for something unrelated and thought, “What the hell? I’ll show it to you. ”
She didn’t even really look at him. He said, “I wouldn’t worry. You have no family history. You are young.” I was 35 years old, so I took it at face value and the lump remained pea-sized until about September. Then it began to grow rapidly.
My family and I were on vacation in Maui (my son Jack was four at the time), and my husband became very concerned. I realized that he didn’t want to scare me, but he almost insisted that we go to a hospital in Hawaii for examination. I called my doctor’s office and made an appointment when I got back.
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So I went back and he looked at him and said, “It’s not cancer at all. 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 really didn’t think he needed it. So I left there with nothing reserved and started thinking about it a couple of days later. I started to worry a little bit. By then, the “cyst” was half the size of a lemon. You are trying to trust what the doctor tells you, but at the same time, you have the feeling that things are not quite right.
I called his office and asked him to do an ultrasound. Between the doctor and the receptionist, they acted like I was a hypochondriac like I was wasting my time. “Well, he says you don’t need it, but …” Comments like that. I usually have a very good and friendly relationship with my doctor’s office. So I think I trusted him so much.
Esperé unas tres o cuatro semanas para la ecografía. Regresó como todos los “componentes quísticos”, lo que significa que no era cáncer. Mi médico dijo: “Vamos a remitirla a un cirujano de senos en la clínica de senos y ellos pueden extraer el quiste por usted”.
Esperé otras tres o cuatro semanas para esa consulta, y cuando fui a la clínica de mamas el 24 de noviembre, hicieron un examen rápido en la habitación antes de enviarme una mamografía. De repente, todos parecían muy preocupados, lo cual fue realmente impactante, porque fui allí pensando que era una consulta rápida. Pensé que me detendría e iría de compras de Navidad después.
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They did the mammogram and took me back to a room and told me at the time that I had cancer. I was a bit argumentative and said, “How do you know without doing a biopsy?” And they said, “We can see it by the pattern of the cells.” They told me it was a 12 cm tumor.
I waited for the 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 they couldn’t see me until the new year.
My husband had already done research in other large hospitals, and we decided to go to the Mayo Clinic in Arizona since we have a family there (we lived in the Seattle area when I was diagnosed). The day before I left, I spoke to the local oncologist briefly and she told me as she chewed her gum that she thought I had about two years to live.
I remember coming home, walking directly into the room, and curling up in bed. It was like in a delusional state. All he could think about was whether he wanted to be buried or cremated. My husband said to me: “Who cares about her? We go to the Mayo Clinic. Things are going to get better. “I said,” What’s different in Arizona? Nothing. “That was my mentality.
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Everything changed as soon as we got to Phoenix and entered through the hospital door. The way they spoke to me and their attitude towards me, everything was exactly the opposite of what they did at home. I first saw the surgical oncologist. He gave me an overview of everything that was going to happen and gave me oncology because tumors larger than five centimeters required chemotherapy before surgery.
The oncologist didn’t think he had another day to lose before starting chemotherapy; he thought he probably had cancer for at least nine months by then. Basically he said he was going to be in a difficult year, but that there would be a light at the end of the tunnel, which is what he wanted to hear.
Originally, at home, I had been diagnosed as Stage IV, because they thought cancer had spread to my liver. But when I came to Mayo Clinic, after seeing all the images, they thought with 90% certainty that it wasn’t cancer in my liver and degraded me to Stage IIIB. But we were still waiting to know if the cancer was a type known as HER2 positive.
[Editor’s Note: According to the Mayo Clinic, “HER2-positive breast cancer is 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 after that, my HER2 test came back positive, and therefore my oncologist added Herceptin and Perjeta, what he called “anti-HER2 therapy.”
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Chemotherapy went from $ 1,400 per treatment to $ 56,000 with anti-HER2 drugs. At that time, we had no insurance; We were completely out of his pocket. When we found out how much it would cost, I said, “We should go home, that’s all.” My husband, God bless him, said, “No, we are not going home. We are going to mortgage our house. If we have to sell our house, we will sell our house.”
I searched online for Perjeta and there was a link to the manufacturer’s website, Genentech. The link said that if you don’t have insurance, they can cover the cost of your medications, including Herceptin. So I printed out the forms, completed them and faxed them, and Mayo Clinic completed their part. A couple of weeks later, I received this random phone call from a representative of the Genentech Access to Care Foundation saying that I had been approved.
When I told them that I had already paid for four treatments, because my first dose of the anti-HER2 drugs was a double dose, they said, “Let’s go back.” So I still paid the $ 1,400 per treatment for chemotherapy based, but they paid for both of their medications. It was incredible.
I did my six treatments, and the last one was actually on my son’s fifth birthday. My nurses remembered him and brought him a cake and everything, which was very sweet.
After talking to my doctors, I ended up having a single mastectomy with immediate reconstruction at the same time. (I had a preventive mastectomy with reconstruction performed on the other side a year later.) Then I did six weeks of radiation, after which I moved 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 in a row. But I felt extremely positive. Once you start to regrow hair and all your doctors say the worst is over, you’re a little stoned.
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My biggest concern was actually a few weeks after I finished my treatment. Because, as I told my oncologist, that he is now a good friend of mine: when you are on chemotherapy, you are sure to see your entire medical team every three weeks. That makes you feel like, how could something be wrong? Things cannot grow in chemotherapy. And then you finish the treatment and you just saw everyone. It’s scary The first two years after treatment, I was very concerned every time I had a headache or stomach ache or something.
My oncologist told me that people with the type of response I had to chemotherapy are much less likely to have a recurrence; I hope it is true. I am currently cancer-free. I get a little nervous saying that, but when it comes to my cancer coming back: it’s in the back of my mind, but I don’t think about it as often as I did a couple of years ago. It is no longer an everyday concern.
My family doctor who misdiagnosed me has since withdrawn. He was an extremely kind man, he definitely tried to go the extra mile for me once he found out I had cancer. But he never came out and said he made a mistake.
Learn to trust doctors and not question them. But now I am just the opposite. If I want something from a doctor, as a referral, I don’t give up. I will not take no for an answer.
