Couple finds support in one another during simultaneous breast cancer battles
One couple's journey to 'new normal'
One couple's journey to 'new normal'
One couple's journey to 'new normal'
Michael Caruso was on the phone with his daughter in January 2017 when he handed the phone to his wife, Xiomara. While stretching, he said, he felt a tug in his chest. Upon further inspection, he realized there was a lump under his right nipple.
"After she was off the phone, I had her (Xio) check it, and she said, 'Yeah, we gotta get you to your primary care physician.'"
He credits his wife's insistence that he go to his doctor as the thing that allowed them to catch his breast cancer so early.
This isn't the first time Michael experienced growths, though. In his 20s, he had to have some benign growths removed.
"If I was still a single guy and I didn't have the good common sense of a wife, I probably would have chalked this one also up as the same thing," Michael said.
After a quick few days of testing, including a mammogram, an ultrasound and a biopsy, it was confirmed: Michael's tumor was stage 2B breast cancer and it had spread into his lymph nodes. He needed surgery to remove the nipple and all the breast tissue, plus the layer of cells underneath and his lymph nodes.
"I was pretty much in shock from the beginning," he said.
Michael thought his family history of prostate cancer would be a concern for him. But further genetic testing found that he carried the , the gene associated with being a carrier for breast cancer, according to Cancer.gov.
Michael had his surgery in February 2017 and has been through months of chemotherapy and radiation. He will have to be on a maintenance medication for the next 10 years. He said that while he still has some neuropathy and numbness in his fingers and toes from one of the chemotherapy drugs, he's taking medication now that has significantly improved the side effects.
Then, in March 2018, as the Carusos were making plans to celebrate Michael's birthday and the approaching end of his chemo, they were dealt another blow.
"For some reason, I started having my memory loss when he started with (his) breast cancer, and a lot of people were saying to me, 'You're just overwhelmed because of everything you're going through with your husband.' But I said, 'No, I'm too young to be going through this stuff.'"
Once her memory problems started affecting her job, Xio went to her doctor, who sent her for testing.
She was diagnosed with a rare but treatable breast cancer, mucinous carcinoma.
Xio said she got the call and immediately got in touch with her and Michael's now-shared oncologist.
"I just broke down to the insurance person. I was sobbing like a child and I kept apologizing and she was like, 'No, I understand."
"Oh, great, here we go again," Michael said he thought at the time.
"My own battle — I was fine. I just accepted it. Being retired military, I follow rules. So when the doctor told me, 'This is what you gotta do next,' I'm like, 'Roger that.' But there were several times I broke down on my own just because she had (cancer, too). I just didn't know how to handle it."
Xio's cancer was considered stage 1 did not require chemotherapy or radiation, but she still opted for a double mastectomy in May. They had caught the cancer early and mucinous carcinoma has a high survival rate.
Michael had to return to work while his wife was still recovering, so their daughter and Xio's mother helped care for her. Later that summer, Michael received his second mastectomy, and their daughter volunteered to take care of them both.
"It's a whole different thing when you're a woman. You're going to lose your hair and now you're going to lose your boobs. And go(ing) through what he went through, I thought I was prepared but I really wasn't. I was expecting that," Xio said, referring to the harsh reality of chemotherapy her husband and been through.
Xio was attending group therapy while dealing with Michael's cancer and she continued to go after her own diagnosis. Since her cancer was not severe in comparison to even her husband's, Xio said she still feels guilt.
"I kind of felt guilty because you go to group therapy, and you have a bunch of people with different cancers and, some of them, you can see the outward signs of cancer, and with me, you can't because I'm covered up. You can't see what my cancer is. You can't see my scars and that I'm still healing. So I kind of told the group how guilty I felt that I was there. I felt like I didn't belong, and I hoped they didn't mind. They were really, really nice and basically told me, 'Of course, you belong. We all have the same journey even though we have different scars.'"
Xio says she is still "a work in progress." Her surgery had some complications and she developed necrosis in one breast, prolonging her recovery time and pushing back her reconstructive surgery. She's looking to get that surgery by the beginning of 2019.
Throughout both of their journeys, not only have they relied on each other for support, but the community around them. Xio said she's thankful for Facebook and online forums for connecting them with people in similar situations.
Michael and Xio have become advocates for male breast cancer awareness, working closely with the to increase awareness about the disease. They attend various health expos, walks and charity events, and said having a unified mission has brought them closer.
The biggest problem, said Xio, is the misinformation surrounding male breast cancer. Not only is it incredibly underreported by the media, but Xio was shocked at how little medical information is available.
"We live in a world of pink," said Xio. "When I Googled 'male breast cancer,' there was really nothing, except men are treated like the women. There was no data, and we kept hearing that from the doctors."
As an example, Xio said that at a recent event a man told them he wouldn't get breast cancer because he "wasn't gay." Another said he gets his urine tested at his annual physical every year. While in some cases it is offensive, this is the kind of ignorance Xio and Michael said the Male Breast Cancer Coalition faces regularly.
They also said there they've seen a considerable amount of shame surrounding male breast cancer.
"A lot of guys do not want to talk about it. They're embarrassed. When we do meet a guy who has gone through breast cancer but has kept it quiet, the joy of them knowing other guys that have the same disease, and that there's nothing to be ashamed of — it's gratifying," said Xio.
Xio said they're starting to meet more men who were first responders or lived close to the Sept. 11 terror attacks in 2001. In September 2018, , claiming there is link between their breast cancer and their exposure to the area immediately after the attacks, but Xio said that number is much higher now that other men have come forward.
The couple continues to advocate for men to get genetic testing done, perform self-exams and insist that doctors perform a breast exam during their annual physicals.
"We want every man who goes to a physical to insist on getting their breasts checked," said Xio. She pointed out that even medical professionals are often uninformed regarding male breast cancer.
They also donated Michael's tumor to so that it can be dissected and used for medical research.
After her parents' ordeals, their daughter underwent genetic testing and the family is happy to report she is not a carrier of the BRACA2 gene.
The Carusos, meanwhile, will continue to find their "new normal."