Lori Macias of Godfrey was taking a bath and thinking about shoveling herself out of a snowy Chicago hotel room last December when she discovered a lump in her right breast.
“I went into a meeting, and I didn’t say anything,” Macias said. “I called the doctor the next morning and got a mammogram, immediately. Just six months earlier, I had a healthy mammogram, and now they were saying they see something and I need to come back for a biopsy. I waited two weeks because I travel a lot, and I didn’t think it was anything.”
Macias went to the biopsy alone, a situation she recommends other women avoid.
“It wasn’t fun,” Macias said. “They were telling me about the process and what was going to happen if I had cancer, and I thought it was bizarre, because I thought I was OK.”
After the biopsy, days passed, and finally she got the diagnosis she hoped not to hear: she had an aggressive form of cancer, HER2-positive. Not only does this form of breast cancer advance quickly, according to the Mayo Clinic, it’s also less sensitive to hormone therapy.
“At first, it is like I was in denial,” she said. “Complete and utter denial. I had an 8-year-old and 4-year-old, my adopted children. We couldn’t have children and adopted kids, and this was God’s plan? We worked so hard to build a family and what if I died? I wouldn’t get to see my kids grow up.”
She was referred to an oncologist, and about a month later she underwent surgery to have the tumor removed. It wasn’t until after her surgery that she learned more about her cancer.
“After the surgery, I found out it had not spread to my lymph nodes, but it was in my blood supply,” she said. “Even though it didn’t stay within the confines of my breast, it was smaller than they thought. The size of a pea. The oncologist finally gave me specifics of the cancer. It was stage one by then, and there were additional tests they had to run to find out the sub-type of cancer, which ended up being HER2-positive.”
Only one in every five breast cancers tests positive for the protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells, according to the Mayo Clinic.
The rare cancer does not run in Macias’ family, and she did not test positive for either breast cancer genes, BRCA1 or BRCA2. In fact, no one in her family has had breast cancer, as far as she knows.
Her first oncologist suggested three chemotherapy drugs, a total of six times, and then 33 rounds radiation. She got a second opinion from an oncologist who had treated her friend with colon cancer, and he recommended Perjeta, a drug that specifically treats HER2-positive cancer, on top of the six rounds of drugs and 33 radiations. She went that route.
Her treatment proved to be grueling. She lost 8 pounds in 3 days.
“I couldn’t eat sometimes,” Macias said. “That chemo is wicked ... I had mouth sores, but I never shared the negative with people. I tried to focus on the good days. Whenever I went in to get my treatment, I saw tons of people who were in a worse condition than I was. So I concentrated on being appreciative for what I had, and I tried to focus on the positive. But it was hard. It wasn’t easy.”
Instead of losing her hair, she opted to shave it.
“I chose to shave it on my own before I lost it, because it gave me a form of control to decide when to let go of my hair or not,” she said. “My husband took pictures of me while I was getting my head shaved. I felt like I was in control, and my husband was there with me while I was shaving my head.”
A St. Louis salon made her a wig that looked exactly like her real hair, and she posted a video at youtu.be/xAsvvsNsvrE of her shaving her hair and wearing her wig for the first time.
“The wig helped me keep a form of normalcy in my life when it was turned upside down,” she said. “The wig prevented people from feeling sorry for me. I didn’t want a pity party. This was the hand I was dealt and I was going to deal with it. In the meantime, I wanted to educate people on the importance of self-exams. I wanted to educate as many people as I could to do self-exams. I had a mammogram and I thought I was fine.”
Macias has shown no signs of cancer since January. She stressed that one in eight women get breast cancer in their lifetimes, a fact backed up by the American Cancer Society.
“You have to do monthly exams, because the mammograms do not catch everything,” she said. “Now looking back, I noticed some changes, also. My breast was itchy, and the nipple was getting smaller. Knowing what I know now, these were signs of my breast cancer.”
Macias will continue to see her oncologist every three months until next January, when she will still go back every six months. Ultimately, Macias feels her experience was more of a blessing than a curse.
“My heart was touched by so many people, including strangers,” she said. “They said prayers, were generous, gave me lots of support and most importantly they were kind. I have learned from this that truly life isn’t about the things. It’s about people and relationships. I received two small tattoos for my radiation treatment, but my heart will forever have a permanent tattoo from everyone’s kindness.”
October is Breast Cancer Awareness Month, and it happens to also be the month Sue Heinz of Godfrey found out she had breast cancer.
“It was October 2012, the beginning of the month,” Heinz said. “It is so ironic that October is Breast Cancer Awareness Month, and that is when I was diagnosed.”
Because of a family history of breast cancer, she already had a mammogram at age 35 and was due for one that November, when she would turn 40. But while showering, she found a knot in her armpit about the size of a ping pong ball and quickly saw a doctor.
“At first, they thought it was cancer, so they did a biopsy,” Heinz said. “But after the biopsy, my surgeon didn’t think it was cancer. It was presenting itself in a strange way. He sent the biopsy off, but he ended up calling to apologize and tell me I had cancer.
“It was like the floor dropped out on me.”
The phone call came on a Friday, and Heinz had to wait until Monday to do something. Wanting to get started on a plan of action, Heinz said that was one of the longest weekends of her life. She also felt another lump near her collarbone.
“I was devastated,” she said. “We have two girls, who were 12 and 9 years old at the time. I thought, ‘Oh my gosh, I can’t die and leave these two kids without a mom.’ I had to survive. I had no choice. I had to, not only for me and my husband, but for our kids.”
Heinz decided to get a second opinion, but both of the treatment plans were the same. She opted to stay close to home and sought treatment in Alton.
“I knew if something happened to me, at least I would be close to home with my family close by,” she said.
After her first round of chemo, Heinz’s blood count plummeted, and she ended up in the hospital.
“I was young, I exercised, and I was fit,” she said. “I think my doctor thought I could take a strong dose, but my body couldn’t. I got out of the hospital on my 40th birthday. I was only going to do three rounds of chemo, but the first round knocked me down. So, the doctor backed off for the second and third rounds, and I also had a fourth.”
Heinz was diagnosed with stage three invasive ductal carcinoma. She believes she was probably only two or three weeks away from being stage four, because the cancer spread so quickly. It was malignant. And it was metastatic, because it had spread into the lymph nodes.
She decided to work throughout her treatment and to let her hair fall out naturally.
“I went to my hairdresser when I first started treatment,” she said. “She cut it really short, because I didn’t want to lose long clumps of hair. When I started to lose my hair, I wore scarfs. I didn’t do a wig.”
After chemo, she underwent a double mastectomy in February 2013.
“I chose to have both of my breasts removed,” she said. “The cancer was only in the left, but the decision was preventative and cosmetic. I wanted to look normal, and I didn’t want the cancer to come back.”
Heinz had to wait until after her radiation treatments to get reconstruction surgery. She said doctors put expanders into her chest and inflated them to keep her skin stretched while she waited.
“One side got in the way of the radiation; so they deflated it, and I had a uni-boob,” Heinz said, laughing. “I didn’t mind, and it wasn’t for very long anyway.”
With her children on her mind, she journaled throughout her treatment process, except during her radiation treatments. She was simply too exhausted to do so.
“I regret not journaling during my radiation treatments, but I was tired,” Heinz said. “I am still glad I did the rest of the time. I can share my journal with my children.”
Heinz finished treatment in 2013 and has had no signs of cancer for three years.
“From the time I was diagnosed to the time I was finished, it was less than a year,” she said. “I go in every four months and get my blood work and exam, and everything is fine.”
She credits her recovery to the love and support of her family and friends.
“I have the best friends and coworkers — some of them were better than family,” Heinz said, laughing. “Seriously though, I couldn’t have done it without my family and friends. It is cliché. People credit their friends and family all the time, but it is so true.”
Heinz said she did not do self-exams before she was diagnosed and encourages women to examine both their breasts and armpits often.
“If you find anything that is odd, you should go right away,” she said. “I am so glad I only waited two days to get it checked out. You have insurance for a reason. Also, get your annual mammogram. It is painful, but only for about 10 minutes. It can save your life. With the technology now, they hardly miss anything.”
She also has advice for those who have been diagnosed.
“Keep your nose to grindstone, and push through,” Heinz said. “Every day of treatment is one day closer to your health, and the treatment will come to an end. I had a friend who survived cancer. She helped me through. She was on the other side, and she gave me hope.
“I want to do that for other women now.”