Originally published at The Western Carolina Journalist.
One in 8 women will develop invasive breast cancer during their lifetime, according to the American Cancer Society’s data from 2013. My mother, Sue Simkiss at age 56 is now the 1 in 8.
She was watching the morning news in early May 2013 when the anchor said that a local Belk store would be hosting a free mammography clinic that day. Because she did not have health insurance, it had been three years since her last mammogram, so she took the opportunity to go and get a new screening done.
Sue’s mother, Rita Lohman, had undergone genetic testing several months before to see if she carried the BRACA I and II genes, which are two genes that have been linked to breast cancer.
Two of Lohman’s nieces had been diagnosed with breast cancer, and wanted to know if there was a possibility that there was a genetic link, and asked her to try the testing.
Lohman decided to undergo the testing so that her nine children and her grandchildren would know whether on not they had a possibility of carrying these genes. The genetic tests showed she did not have the genes, so getting a diagnosis of breast cancer was the furthest thing from Sue’s mind.
Sue received a phone call from the mobile mammography unit within 24 hours of her screening saying that they found an abnormality, and needed to seek immediate re-testing at the nearest hospital, which was the Raleigh Rex Hospital.
“My first thought was that this was likely a false positive, since we just had the genetic testing and since many of the tests do have some false readings,” Simkiss explained.
After retesting, it was discovered that there were three tumors in her right breast and one in the lymph node under her right arm.
“I … had so many questions. I had no symptoms and the tumors could not be felt by the radiologist or subsequently by any of the doctors treating me.”
The radiologist doing the retesting told her that getting the mammogram was “one of the best decisions I have likely ever made. That by getting the mammogram I had just saved my own life.”
Simkiss was officially diagnosed within the next two weeks with two types of breast cancer – invasive ductile carcinoma and metastatic non-small cell carcinoma. She was staged between stage 2 and 3 for both types of cancers.
According to WebMD, invasive ductal carcinoma begins in the milk ducts of the breast, but “can grow through the duct walls and into the surrounding breast tissue. And it can metastasize. That means it can spread to other areas of your body.”
Her first call after her diagnosis was to her friend Kelly Whitney, who had finished her treatment for breast cancer a few years before. She needed to know what steps she needs to do first. Whitney was supportive, but told Sue to get her financial paperwork together and take it to Rex, where Whitney had had great experiences with her treatment.
“I decided that I did not want to freak everyone out in the family. It was finals week for you [Ceillie] and Kirstie, and Alec was just about to open in his play… I actually was more distressed about telling you [kids], more than finding out I had cancer myself. My friend Dina [Matthews] helped me make a plan that we thought would be the least disruptive to your education and to Alec in his play, and a plan to tell the extended family,” Sue explained.
It was a hectic time in all of our lives, even before we knew about the diagnosis. Alec is a high school actor performing in “Ghost Detective,” and Kirstie and I had come home from college the day before. Alec’s play had closed, and she sat us all down on the couch and told us that she had gone to get a mammogram, and that it had come back abnormal.
She had already undergone the retesting, and told us about the tumors and the doctor’s assurance that it was definitely breast cancer – they just didn’t know what kind yet.
Kirstie was shocked and “felt like the rug had been pulled out from under us all.”
Alec’s mind immediately went to the worst possible conclusion. “My immediate thoughts were ‘What the hell am I, are we, as a family going to do when she’s gone?’ and I didn’t really have an answer…It was a huge punch to the gut. I didn’t expect it. None of us did.”
His second thought was, “Why her? Why someone who is such a good, kind, and caring individual who still has retained her hope in the world? Why her, of all people?”
In just two weeks, Sue went from working with Retail Data – a price checking company- and actively volunteering in the Drama Program at the high school with Alec, to telling her extended family, having to cancel work, and attending numerous doctors’ appointments for testing, scans, and biopsies.
One of the worst things about being diagnosed with cancer was the loss of control over her own schedule, according to Sue.
“I was always firmly in charge of my calendar/schedule. Doctors appointments, tests, biopsies seemed to take over my calendar. Many of them I had no control over …[the] time and date because time was of the essence. Trying to work on top of that was a real challenge. Work dwindled in favor of my health as did our financial stability.”
Sue had to cut down on the days that she worked because her energy levels dropped so much from the chemo and it’s symptoms, as well as the type of work that she does.
Sue’s work for the company involves driving to area grocery stores and checking their prices for their competitors. Because of the suppression of her immune system, she was much more susceptible to diseases like the common cold and the flu.
Although Sue’s boss, Pam Brody, was accommodating to Sue’s health needs and giving her work that she could handle without feeling overwhelmed my mother was unable to work as much, causing a significant financial strain on the household because of the extra medical and travel expenses. My father, William Simkiss, tried to pick up more income, but there’s only so much one person can do.
“I’m trying…to fill in the gap. And be home more often. And do the chores. And occasionally sleep. So I need to be home more and away from home building up my business more.”
Something that has helped their financial troubles is calling on their support system to help out with meals on weeks when Sue has her chemo treatments.
“The help that people give us, the simple dropping off of a meal, saves us surprising amounts of time and energy,” William said.
Their support system includes their own friends and family, but also other cancer survivors.
“I have found people that I don’t even know supporting me because they had a sister, or mother, or aunt who went through breast cancer or some other cancer,” Sue said.
Sue also said that she wouldn’t know what she would have done without being accepted for Medicaid, due to her lack of insurance. The Susan G. Komen Foundation estimated an average cost of $22,000 to manage the early stages of breast cancer, whereas stages 3 and 4 of the disease are associated with treatment costs in excess of $120,000. Sue estimates that she would already have over $100,000 in costs for treatment, not including radiation and the continuing treatment.
Six months after her original diagnosis, Sue had her double mastectomy on November 5, with radiation to follow. The surgery went very well, according to William, and after 24 hours of rest in Rex’s recovery ward, Sue was released to recover in her own home. Her recovery is going well so far, but is expected to take a while.
Sue is not supposed to lift anything at all that weighs over five pounds for the next few months, and she has taken a leave of absence for 60 days in order to give herself time to recover from the mastectomy.
She will also be on a receptor-blocking medication called Herceptin via infusion for the next year, and by mouth for the next five in order to prevent the already low chance of the cancer’s return.
“I’m hoping to find some new sort of normal after this is all over. But what will normal look like?” Sue asks herself.
This process has definitely given everyone in my family a whole new set of experiences, but we are all looking forward to the day when Mom’s able to do more than wait for her body to heal. It’ll be really wonderful for her to be able to be up doing what she loves.