Putting a face on disease

Three years after a breast cancer diagnosis and two years after a double mastectomy, an Indianapolis woman still struggles with the effects of a disease that she was never supposed to get.

Heather Densmore never had cancer in her family. She tested negative for the BRCA gene markers that can come with a family history of breast cancer and can cause breast and ovarian cancers in young women.

If it could happen to her, it could happen to anyone.

“It was so odd to me, you wonder how that happened,” she said.

Instead of lamenting about what happened, Densmore decided that she would use what she went through to help people.

She was approached by the American Cancer Society and has given speeches to middle school students about cancer, told 400 college-aged women her story about how she felt a marble size lump in her breast one day and told a roomful of men for a breast cancer campaign aimed at men how the cancer turned her life upside down.

Densmore’s age at the time of her diagnosis, 29, is powerful because it shows that the disease can happen to anyone, said Beverley Stafford, senior community development manager for the American Cancer Society.

She is young, charismatic and in shape and didn’t have cancer in her family, she said. And she looks healthy and delivers the message of her story well, making her an ideal candidate for presenting at events, Stafford said.

At the event that was specifically targeting men, most of the men attended because an older relative had gone through cancer. Densmore was their age and was telling them how her life flipped upside down. Her story gave them more appreciation for the disease, Stafford said.

“She really put a face on it,” Stafford said.

Densmore decided to start speaking while she was still going through treatment to give herself an outlet for what she was going through. Telling her story to others helped her cope and get through treatments, she said.

For me, it taught me to be truthful, for not only myself, but for people who care about me.

This experience was given to her for a reason and she wanted to turn a negative into a positive by helping others, she said.

“It kind of helped my spirit and confidence,” she said.

After treatment was over, she no longer wanted to talk about having cancer. Even hearing the word was bothersome, and she needed to take a break from advocacy, she said.

“I got to a weird spot where I didn’t even want to hear the word ‘cancer,’” she said.

Her ordeal started when she was 29 and felt a marble-sized lump in her breast while showering. She chalked it up to hormones. Two weeks later, it was still there, so she had it checked.

Doctors weren’t worried. She was young and had no history of the disease in her family. They took an ultrasound and biopsy of the lump on a Friday. Densmore went about her weekend never thinking that it could be cancer, she said.

On Monday morning, they called her with her diagnosis.

Densmore was at her job at an Indianapolis law office and fell to her knees and began sobbing.

“I just fell to my knees, I was in shock and hysterical,” she said. “It was almost like my mind shut off.”

She couldn’t think straight enough to form words. Co-workers began to look at her as she hysterically sobbed and walked to her boss’s office. Her boss drove her home instantly and she called her family.

She moved in with her sister’s family while going through treatment.

Chemotherapy started and Densmore was so sick from the treatment that she couldn’t work. Gastrointestinal side effects kept her in the restroom at least eight times a day. She worried that she could have an accident even during a walk to her car.

She told her sister she thought she was dying.

It definitely matured me. I grew up a lot from the experience. I am able to brush things off. Before, I took everything to heart. Now it is not a big deal.

“It felt like it was shutting my body down, almost,” she said.

Treatments made her depressed, which was compounded by a break-up with a boyfriend who said he couldn’t deal with her diagnosis and the new normal that was her life as a cancer patient.

“It was just a bad time,” she said.

Then she found out that the chemotherapy was not shrinking the tumor and that the cancer had spread and was now under her left armpit. She had surgery to have 26 lymph nodes under her left armpit removed.

No one on her treatment team had heard of tumors actively growing and spreading while on chemotherapy. Her next treatment option was to go to the St. Vincent and Community Hospital tumor board, who took a look at her treatment plan.

“I was like, ‘what, what do you mean you have never seen this,” she said.

She did a round of radiation, which charred her skin slightly at the treatment site, but was considered a slight side effect, according to her medical team.

Then she decided that she wanted a double mastectomy. She never wanted to deal with cancer in her breasts again, she said.

So, as a 31-year-old woman, she asked surgeons to remove both her breasts.

“For me, it wasn’t a question. I don’t want them, get them out of my life,” she said.

Recovering from a double mastectomy was worse than the decision to lose both of her breasts. She lived with her sister and brother in-law, who were covering her bills while she wasn’t working because of treatments.

And her sister was her caregiver who daily drained the five tubes that were hooked to her surgery sites. Her sister helped bathe her and in some instances, cleaned her up after she went to the restroom, when Densmore couldn’t lift her arms above her hips.

After the mastectomy, doctors wanted a second round of chemotherapy to make sure that the cancer would not come back. Densmore resisted.

She had a new job and wanted to find a new normal without surgeries and cancer treatments.

“I wanted to be done so bad,” she said.

A few days later, she relented and knew that she should do what the doctors recommended to make sure that the cancer was taken care of, she said.

After chemotherapy, radiation, the removal of dozens of lymph nodes and a double mastectomy, she is now considered cancer-free. She had her breasts reconstructed in January of 2016.

The ravages and scars of what she went through remain.

Credit cards were nearly maxed out to help pay for treatments. Her jobs offered her insurance, but the expenses were not covered 100 percent. She paid for the rest of it on her credit cards, and is still paying those off.

“It is so hard to make a dent because the interest is so high,” she said. “It will take me a while to get back to where I was at.”

She also faced a surgery to deal with lymphedema, a disease that accompanies the surgery to have dozen of lymph nodes removed. The lymphedema caused swelling in the arm where she had the lymph nodes removed.

Before the surgery, there were days when she struggled to lift that arm, Densmore said.

Cancer has made her a stronger person in some ways.

Small issues in life are easily brushed off when you have been through cancer, and obstacles in life are almost always smaller than fighting for your life during cancer treatments, she said.

“I grew a lot from the experience,” she said. “I am able to brush things off now.”

[sc:pullout-title pullout-title=”Heather Densmore” ][sc:pullout-text-begin]

Age: 32

Residence: Indianapolis

Date diagnosed: Aug. 11, 2014

Type: HER2 breast cancer

Treatment: Chemotherapy, surgery, radiation, double mastectomy

What cancer taught me: For me, it taught me to be truthful, for not only myself, but for people who care about me.

How cancer changed me: It definitely matured me. I grew up a lot from the experience. I am able to brush things off. Before, I took everything to heart. Now it is not a big deal.

What I would tell someone: It sounds silly to say it, but everything will be OK. It will be OK. I would get mad when people said that.

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