Her insurance wouldn't pay for reconstruction after mastectomy — so this Joliet mom of 6 found help elsewhere

The first time Heather Allen of Joliet learned her family had a strong history of cancer is when her mother was rushed to a hospital emergency department.

That tragedy led to Allen’s own cancer diagnosis and getting connected with the Alliance in Reconstructive Surgery (AiRS) Foundation, on the receiving end and as an advocate.

The AiRS Foundation is a 501(c)(3) a non-profit that helps women who've had a mastectomy and can't afford breast reconstruction pay for the reconstruction, according to a news release from the foundation.

As an AiRS advocate, Allen supports other women going through a similar situation.

“I’ve had the chance to speak with a lot of women and I love it,” Allen said.

Allen’s mother was subsequently diagnosed with ovarian cancer and died a short time after her diagnosis.

Allen, a home-schooling mother of six, soon learned that other members of her family had battled breast and prostate cancer, including one aunt who stayed with the family while Allen was undergoing treatment.

So Allen was advised to get genetic testing done. She tested positive for the BRCA2 gene and had a screening mammogram done, which was normal.

One night shortly after her mother’s while taking a bath, Allen found a lump. Allen called her doctor, which led to a second mammogram, an ultrasound and a biopsy.

Allen had triple negative breast cancer in her milk duct and the tumor was two centimeters long. Allen was 37. She turns 40 next week.

Triple negative cancers tend to grow faster than other breast cancers, are more likely to recur and can be more common in African American women, according to the American Cancer Society.

Consequently, Allen was advised to have chemotherapy, a double mastectomy and a complete hysterectomy.

Allen said she asked the doctor to leave the room so she could process it.

“Honestly, I just mentally broke,” Allen said. “It was mind-blowing; it was heartbreaking; it was just really hard to deal with. I thought, ‘It can’t be true. It must be a mistake.”

Allen researched her options, eventually realized the doctors were right and began chemotherapy.

The plan was 16 rounds of chemotherapy followed by a double mastectomy and reconstruction. The tumor started shrinking with the first does, but the treatments themselves were rough, Allen said.

She reacted to the very first dose with shortness to breath and a racing heart and needed steroids to abate it, she said.

But although chemotherapy made Allen tired, she remained positive throughout the process, thanks to the advice of her oncologist.

“I remember her telling me, ‘This chemotherapy is not going to feel good. You’re not going to like it,’” Allen said. “But you have to act happy. I need you to do everything you were doing...You need to remain upbeat and stay busy.’”

As the date for Allen’s surgery approached, her health insurance changed. The new insurance did not cover the reconstruction. So Allen balked at the surgery.

She felt if cancer was going to take parts of her away, Allen at least wanted some of them returned. Cancer, Allen decided, wasn’t going to make all the decisions.

“This was already a battle,” Allen said.

Allen researched options online and found AiRS, which paid for most of Allen’s reconstruction, she said. Allen said AiRS supported her through the entire process.

Allen had the double mastectomy on March 9, 2017 and that took longer than she expected.

“It was only supposed to be for a few hours,” Allen said. “I went in at 7 or 8 in the morning and came out at 10 o’clock at night.

Allen went back for a second surgery for an infection on her left side. Then on March 9, 2018, she had surgery to receive her implants.

On March 29, 2018, Allen had her hysterectomy, which resulted in hot flashes, anxiety and mood swings, she said.

Allen said she was offered hormone replacement but Allen decided against it.

“I just wanted to go through the process with no more medicine, no more shots, no more anything,” Allen said. “I just wanted to handle it however it comes.”

Allen said she’s had some trouble with the reconstruction in terms of tightness, one of the reasons why some women choose to forgo it, she added.

But she’s satisfied with her decisions regarding treatment and reconstruction. Her only follow-up, currently, is an annual ultrasound, she said.

“I’m happy to be able to see my kids grow up and to live my life,” Allen said. “I’m still alive and I still have my family. At the end of the day, I’m grateful.”

For more information about AIRS, visit airsfoundation.org.