Life after breast cancer: From reconstruction to preventing recurrence to long-term side effects, the journey continues after becoming cancer-free

For the majority of women who have been diagnosed with, are getting treated for or have beaten breast cancer, survivorship is a daily, ongoing journey.

"One of the fortunate things, I think, in the advancement of our treatment of breast cancer is that survivorship is now a huge part of that, and I think is a must," says Dr. Andrew Moore of Southeast Hospital's Cancer Center. "I think that recognizing survivorship starting at the day of diagnosis is of utmost importance, because even though many of our treatments are becoming much more effective, none are without side effects and without potential long-term side effects."

Moore says survivors who have higher body mass indexes, or BMIs, have an increased risk of recurrence, and that what the hospitals call "surveillance" is a necessary tool to help them stay on track physically and mentally. The hospital also has "patient navigators," or counselors who are readily available to help guide patients through survivorship.

"[We] really get into that healthy lifestyle modification, continued surveillance, especially for contralateral breast cancers, because many patients are at risk for a second primary," Moore says. "Making sure that they stay focused on surveillance and follow up for other, even age-appropriate, cancer screenings is very important."

Moore says the process from the diagnosis of breast cancer to treatment and recovery is intensive, with many doctors and specialists involved. He says once survivors are in remission, anxiety can build, since there are no longer weekly or daily updates or reassurances concerning the patient's condition. With several months to wait until the next checkup, survivors may begin to worry about the possibility of a relapse. This is where the patient navigators come in.

"The end of treatment time is very anxiety-provoking for a lot of patients," Moore says. "[The patient navigator] is a great resource to connect with and touch base with ... and she will be the mediator to us, me and my partners, as far as, 'Hey, not sure if you know this, but patient X is dealing with this,' because they many times will tell her a lot of things that they think to us it isn't important enough to talk to us. They just want to talk to us about, 'Is my cancer back or not?'"

Dr. Olivia Aranha, an oncologist and hematologist at Saint Francis Medical Center, says once patients go into the surveillance phase, they visit with doctors every three months for two years and every six months until the fifth year. She says once a patient gets past the fifth-year mark of being in remission, the risk of recurrence is much lower.

"We generally don't do scans, but we definitely continue to do annual mammograms and a bone density evaluation every two years," she says.

Moore says he tells patients entering remission there are still things they can do proactively to decrease the chance of recurrence.

"The main one is healthy weight and maintaining a normal BMI," he says.

Chemotherapy and other treatments could damage a woman's metabolism or affect bone health and accelerate osteoporosis, so Moore recommends calcium and vitamin D supplements along with doing weight-bearing activities for women who are done with treatment.

"I like to try and present that to them as active therapies. That's their new chemotherapy, and that's something they can control and can do. ... I think staying on a compliant surveillance plan, cardiovascular health and bone health would be the three areas that patients can have control in and are the most important," Moore says.

Moore mentions that some women who have strong family history of breast cancer opt for prophylactic mastectomies to decrease their chance of developing cancer later in life. He says there have been advancements in terms of breast-conserving surgeries as well.

"Just as each breast cancer is unique clinically, I think each patient is very unique in terms of their desires. I will say that the opportunities for breast conservation surgeries, where reconstruction or mastectomy may not be needed, those opportunities have increased dramatically with the sequencing of our chemotherapy treatments along with surgery. A lot of it is very patient dependent," he says.

Moore says the Cancer Center nurses and patient navigators organize celebrations for women entering remission.

"It is a big deal for all of our patients. It's a major milestone. It's a way for all of us to celebrate together them getting through that. ... For a lot of these women, especially someone who went through more of a breast conservation approach with a lumpectomy, they may go through surgery, possibly three to four months of chemotherapy followed by a couple months of radiation therapy. Their life has been altered dramatically for six to eight months straight, and so it is a way to celebrate being done with that phase and going into the next phase of survivorship," he says.

Aranha agrees that the main concern for a woman entering remission is to focus on her physical and mental health going forward, but also to enjoy the moment and realize she is now cancer-free.

"First thing, women are most anxious when they're first told they have the disease on a mammogram. I think that's the worst day in every woman's life, they'll tell you that was the worst day," Aranha says. "Once they've had surgery, we try to explain to them that they have no cancer in them, so whatever they're doing is just to keep it from coming back, so that's when we congratulate them. But once they finish chemo, we usually give them a little certificate saying they've beat it and now we're going to monitor them, and they start their journey on to be a survivor, a cancer survivor."

Aranha says getting back to "normal life" after treatment is one of the most difficult things for cancer survivors to do.

"I think every woman will tell you once they have had cancer that their life is never the same," she says.