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Advocacy group helps breast cancer patient overcome fear and channel her anger to battle the disease.
“My reaction the day I was diagnosed was anger. My gut knew, so I wasn’t particularly surprised by it, but it was anger and a lot of fear.”
In 2001, Chicago, IL resident Megan, who wishes to remain anonymous, found a lump in her breast. After having it checked out right away, the results came back benign. However, years later she would find a lump again. This time, fear would prevent her from seeing a physician for several years.
“I think this time my gut just knew and I think I was scared,” Megan said.
The 38-year-old Ohio native was diagnosed on October 1, 2015 with stage 4 breast cancer. She is estrogen and progesterone receptor positive (HER+) and tested negative for BRCA1 and BRCA2.
Since her diagnosis, Megan has undergone 4 out of 6 chemotherapy treatments using trastuzumab, pertuzumab, and docetaxel, as well as a monthly estrogen shot called goserelin. Because her tumor is overexpressed, she was able to use several new medications, as well.
The side effects from these therapies began to take a toll on her. After the first treatment, Megan completely lost her hair.
“The hair ironically, was the hardest one for me because I loved my hair and I always had long hair,” Megan said. “I’m very girly, so I wear wigs.”
After the second treatment, her physician told her that the primary tumor already felt much smaller, in addition to 2 cancerous lymph nodes under her arm. A primary concern for Megan prior to treatment was if she would be able to stay in Chicago.
“I absolutely love Chicago, it truly is my home,” Megan said. “I moved here nearly 5 years ago. A couple of family members had really shaken me up and upset me. They were adamant in saying, ‘you’re not going to be able to do this. You’re going to have to move back to Ohio, in with your mom.’”
Her other concern was whether the treatment would affect her ability to exercise.
“I’m very physically active,” Megan said. “I absolutely love running. It’s extremely important to me emotionally and I was concerned about the treatment taking so much out of me that I wouldn’t be able to do it.”
Fortunately, Megan was able to remain physically active and continues to go for runs, but there have been some side effects from treatment, such as feeling on edge and nausea.
“I’m a bit edgy right now,” she said. “They put me on a steroid that protects me, but at the same time it makes me very antsy.”
After Megan’s latest appointment with her oncologist, she received good news. Her physician declared that he could no longer feel any lumps.
“For someone with stage 4 breast cancer, this is huge. My primary lump and the 2 lymph nodes under my arm were quite sizable prior to chemo,” Megan said. “Yet, after just 4 treatments, he can no longer distinguish them during a physical examination.”
Megan still has 2 more chemotherapy treatments left in this round, followed by a CAT scan on April 4, 2016. The scan will provide a definitive update on her primary tumor, cancerous lymph nodes, and the tumor in the lining of her lungs.
Despite the initial devastating diagnosis of stage 4 breast cancer, Megan saw a glimmer of hope just 4 days after her diagnosis. A friend of hers encouraged her to reach out to Jonny Imerman, a 2-time cancer survivor and founder of Imerman Angels.
“He talked to me on the phone that night and met up with me the next day,” Megan said. “He has been a great source of support ever since then.”
Imerman Angels was created around the idea of providing one-on-one support from cancer survivors (Mentor Angels) to cancer fighters. Megan currently has 2 Mentor Angels who she keeps in contact with on a regular basis.
“One has no evidence of disease, she beat cancer a few years ago,” Megan said. “She beat stage 4, and that is my ultimate goal. My other Mentor Angel is great as well. She hasn’t beaten it, but she is stable enough that she’s only on like 1 medication a month. She’s no longer going to chemo because her cancer has stabilized.”
She has also become a member of Imerman Angels Professional Board, in addition to volunteering at events.
“Imerman Angels has really become my second family and a critical support system for me as I go through this,” Megan said. “Especially with stage 4 cancer, because it’s considered incurable by the medical community. In the medical communities’ eyes, it’s a death sentence.”
This lack of support from health care providers has been her biggest challenge fighting the disease.
“You’re not going to get any encouragement from your doctor at all,” Megan said. “In their mind it’s not curable, in their mind the statistics say that I will likely be dead within 2 to 3 years, and I would say that is the biggest challenge right there.”
Megan admits that she does have some dark days, but has found that the support from Imerman Angels has helped her approach her situation with positivity.
“I can’t emphasize enough what a blessing it has been,” Megan said. “I know that sounds weird. I mean, I have cancer so why would I be happy about an organization that came into my life because of that? But it has enriched my life in so many ways and they’ve given me opportunities that I didn’t have before.
“On the one hand, of course cancer is never a good thing, but on the other hand, through Imerman Angels I’m getting an opportunity to have a second family, as well as go out and do some public speaking and write about my experience. I really get to demonstrate a positive role model for other stage 4 breast cancer patients — that there’s still life, there’s still hope, and it’s not the end for you. I do believe I will beat this disease.”
Many doctors have told Megan that a positive attitude has the potential to drastically change the outcome of cancer treatments.
“My attitude wouldn't have been nearly as positive without my 2 Mentor Angels and the undying support at Imerman Angels,” Megan said. “I can't emphasize this enough.”
For patients who are recently diagnosed she suggests they find a support system and be sure to get all the information needed from physicians.
“I would tell them to go to Imerman Angels for one-on-one cancer support,” Megan said. “It’s free, I have 2 Mentor Angels and they really help to give me a lot of hope and comfort. So go online to the website and get registered. The second thing I would say is ask all of your medical providers tons of questions, be your own patient advocate, don’t ever assume that people are going to be telling you everything that you need to know. Ask questions. And don’t assume just because a family member or friend tells you that you have to do your treatment a certain way, that that person is correct. You can work it out the way that you need to for yourself.”
As far as what caregivers can do to better help those suffering from this disease, Megan believes that listening is key.
“I think listening is extremely important. Even though you’re doing a wonderful thing by being their caregiver, this is still their journey, it’s their disease,” she said. “Yes, you’re walking along with them and you should definitely be commended for what you’re doing for them, but at the same time they’re the ones who are going through it, so really listen to them.”
For those who are going through the cancer journey, it’s important to not lose hope.
“Anyone who’s diagnosed with stage 4 breast cancer, don’t be satisfied with just seeing it as a death sentence. Your life isn’t over,” Megan said. “More and more people are beating stage 4, its rare still but the numbers are increasing. So just don’t lose hope.”