For Renee Robinson of Westphalia, finding breast cancer early may have saved her life. Learning to live after reconstruction took considerably longer.

Robinson was diagnosed in April 2021 after years of close monitoring because of dense breast tissue and recurring benign cysts. She had undergone a mammogram that January with no sign of cancer. Three months later, an MRI found a 2-centimeter spot in her left breast, which testing showed to be an aggressive cancer.

“If I was a normal person and was going in yearly, I don’t know what would have happened,” Robinson said. “That is why it is so crucial to test and to catch it early.”

The diagnosis also frightened Robinson for reasons that had nothing to do with her own future.

Her sons, Levi and Lucas, were both teenagers when she was diagnosed. Robinson paused as she recalled what it was like for them to watch their mother begin a battle none of them had expected.

“It was just tough,” she said.

That fear was still fresh when Robinson was asked to begin making decisions about surgery and reconstruction.

Robinson could have undergone surgery to remove the cancerous area, but given her history and risk factors, she chose a double mastectomy.

Then came another series of choices she had barely had time to consider.

Doctors discussed reconstruction and breast implants, and Robinson remembers how quickly the conversation moved from a cancer diagnosis to decisions about what her body would look like afterward.

“You’re diagnosed with something, you’re thinking about your family, your kids, what’s going to happen, and then you’ve got to make this life-changing body vanity question right then too,” she said. “You just want it done.”

Robinson chose reconstruction.

“I just wanted to be me,” she said. “I wanted to look like I used to look. I wanted my life back.”

After the mastectomy, Robinson learned she would not need radiation treatment, removing one major concern from an already overwhelming diagnosis.

For a brief time, it appeared the worst might be behind her.

Instead, within months of receiving her implants, she began feeling as though something was wrong.

The cancer had been addressed, but Robinson did not feel as though she was recovering.

She ached. Her complexion changed. Her hair began falling out in the shower. She struggled to sleep and developed problems with memory and concentration.

“I kept feeling like I was dying inside,” Robinson said.

Doctors initially suspected other causes. Medications were changed. When problems developed on her left side, she underwent another surgery in which the implant was replaced and the area washed out.

Then the right side began causing problems.

Another procedure followed.

What had started as breast cancer treatment became an eight-month ordeal after reconstruction as Robinson tried to understand why she continued feeling worse instead of better.

She eventually began researching her symptoms and found accounts from women describing what has become known as breast implant illness, or BII.

The U.S. Food and Drug Administration describes BII as a term used by some patients and health care professionals for a collection of systemic symptoms reported by women with breast implants. Symptoms can include fatigue, memory and concentration problems often described as “brain fog,” joint and muscle pain, hair loss, anxiety, depression, rashes, and weight changes.

The symptoms have been reported with both saline and silicone implants and can begin soon after implantation or years later.

The FDA says the cause of the symptoms and the extent to which they are related to breast implants remain unclear. BII is not currently recognized as a formal medical diagnosis, and there is no specific test for it.

For Robinson, however, the turning point was unmistakable.

Her husband, Glen, had watched her struggle through months of pain, sleeplessness, and emotional changes. Eventually, he accompanied her to a doctor’s appointment.

“He was tired of it,” Robinson said. “I was not the same person. He didn’t know, ‘Is she going to be crying? Is she going to be hurting?’ I wasn’t sleeping at all. In the shower, my hair would just fall out.”

When the doctor asked what Robinson wanted to do, Glen had an answer.

“Take them out.”

Robinson underwent explant surgery in May 2022.

“Within 10 hours after my surgery, I started feeling better,” she said.

Research has not established that implant removal will resolve systemic symptoms for every patient. The FDA says some women report improvement after explant surgery, while researchers continue trying to determine why that happens and which patients might benefit.

Robinson has no such uncertainty about her own experience.

“I can vouch for breast implant illness any day,” she said. “I am a true believer in that and what was happening to me.”

A patient account Robinson shared described another woman with many of the same symptoms — fatigue, brain fog, muscle and joint problems, and a feeling of declining health — who also reported improvement following implant removal.

For Robinson, the physical improvement brought another realization: cancer treatment does not end when surgery ends, and neither does recovery.

“People don’t talk about after, during your treatment and afterwards,” she said. “You don’t just heal right away. It’s more of a mental thing.”

That can include the decisions surrounding reconstruction.

Robinson said she initially viewed implants as part of getting back to normal. Eventually, she had to redefine what normal meant.

“It took a while for me to figure out that it’s okay not to be normal,” she said.

There are still reminders.

Swimsuit season. Sitting at one of her children’s basketball games. Looking in the mirror.

“It’s always in the back of your mind,” Robinson said. “But you just have to be stronger. It’s more of a mental thing. There’s no treatment to be prepared mentally before, during, and specifically afterwards, because it takes you longer to heal mentally than it does physically.”

The American Cancer Society notes that anxiety, worry, and depression can continue during survivorship and encourages patients who need help to talk with their cancer care team, counselors, support groups, or others who have shared similar experiences.

Robinson found some of that help online.

At first, she did not personally know anyone experiencing the same problems she associated with her implants. Online groups introduced her to women with similar stories.

Now, she tries to provide that same connection to others.

When Robinson learns of someone locally who has been diagnosed with cancer, she routinely offers her phone number.

“Everybody’s story is different,” she said. “Everybody’s cancer is different. But sometimes people don’t understand, and they just need to talk. They need to know that they’re not alone.”

She has spoken with women locally and elsewhere, including people she had never met.

Sometimes, she said, that is exactly what someone needs.

“Your closest friends or your family — sometimes you just need to talk to a stranger,” Robinson said. “There’s no judging.”

That support does not replace medical advice, she emphasized. Ultimately, each woman must make her own decisions with her medical team.

But she does not believe she should have to make them alone.

Robinson continues follow-up care with her cancer doctor, undergoing blood work every six months and watching for changes around her lymph nodes. She said there has been no confirmed recurrence of her breast cancer.

Her experience also reinforced the importance she places on screening.

Recommendations vary depending upon age and individual risk. The U.S. Preventive Services Task Force recommends mammograms every two years for average-risk women ages 40 through 74, while the American College of Radiology recommends annual screening beginning at 40 and earlier risk assessment to identify women who may need more intensive screening.

Dense breast tissue can both increase breast cancer risk and make cancers more difficult to identify on mammography. Women with dense breasts should discuss their individual risk and whether supplemental imaging is appropriate with their health care provider.

Robinson knows firsthand why that conversation matters. A mammogram had found nothing three months before an MRI found her cancer.

Her message to other women is considerably less clinical.

“If you can book a pedicure, you can book a mammogram,” Robinson said. “Trust me, it’s worth it.”

She also knows something now that she did not when the process began in 2021.

Surviving cancer is about more than removing the cancer.

It is also about what comes next.

“If I can help anybody out there, I think that is what I’m here for now,” Robinson said. “I don’t want anybody else to think that they’re going through this alone.”

Her advice is simple: listen to the doctors and to others who have walked the road, but also pay attention to what your own body is telling you.

“Sometimes you just need to listen to yourself and listen to your body,” Robinson said.