Advocating for Your Health
- After seeking medical attention for a sore throat and a “papery whisper” of a voice, Jen Hardy was eventually diagnosed with metastatic breast cancer.
- Metastatic breast cancer is technically not curable, but with ongoing advancements in treatments and options to dramatically reduce symptoms, there are many reasons to be hopeful.
- Being your own advocate can be key to coming to a correct cancer diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
Hardy, 54, went to the doctor thinking she had a throat infection and left with a diagnosis of laryngitis and a recommendation of rest. Unfortunately, this would prove to be a misdiagnosis.Read More
“I had lost my voice for weeks, but I never thought that it would be cancer and had no concept of the urgency when I was told to come straight home,” she told BBC Scotland. “And even when I was told it was incurable I still didn’t appreciate what it meant.”
Four hours after receiving the news of her stage four breast cancer in October 2017, Hardy hopped on plane in Dubai to head back to her home in Edinburgh, Scotland. Looking back, her diagnosis was shocking but there were signs. She didn’t have any lumps in her breasts, but there was a small lump near her collarbone that she thought was a knot in her muscle. And her lost voice was the result of a tumor near her vocal cords.
“I always checked my boobs and had never found anything that would flag up breast cancer to me,” she said. “So, to hear I had advanced breast cancer, I couldn’t understand it.”
Hardy’s voice came back to almost full strength after doctors injected a filler into her vocal cords, but she can no longer sing. She then had chemotherapy and radiotherapy. Now, she’s on a maintenance regime of daily letrozole and intravenous Trastuzumab (Herceptin) every 3 weeks. With her new medication, Hardy’s been given several more years to live – a wonderful change in prognosis from the original estimate of two or three years at the time of her diagnosis.
“I thought I was going to die and that I only had months to live, and so did my family,” she explained. “It feels so surreal, mind-blowing to suddenly have a future… To hear I now have years and years is incredible. I don’t think I will make it past 60 but I’m thrilled I get some future and that it won’t all be about cancer, treatment and hospitals.”
Hardy’s focus today is enjoying time with her family, working out with her cancer fitness class, traveling as much as possible, seeing her daughter graduate from college next summer and – last but certainly not least – trying to launch a charity dedicated to providing resources to other people with cancer.
Jen founded Cancer Card in 2020. The Scottish organization gained charitable status this year, and now she’s working towards a launch in 2022. Her goal is to create “a single place for anyone affected by cancer to find access to everything they need.”
The website will have links to charities, mastectomy pillows for sale, support services and much more.
“It will be the Google of cancer,” she said. “I have found so many amazing charities over the last few years that help to improve the lives of those affected by cancer and others who give free chemo boxes full of items you need… It has taken me a long time to find them all and I want to have a place where others can go to find all the information very easily. I don’t know why there isn’t one already.”
Understanding Metastatic Breast Cancer
Hardy has proven that an advanced cancer diagnosis does not require that you stop living. But like many others, she didn’t realize you could live with an incurable cancer when she first received her diagnosis.
“My concept of cancer was you either get cancer and you are cured or you die, I had no idea about living with it,” she said.
Metastatic breast cancer – also called “stage four” breast cancer – means that the cancer has spread, or metastasized, beyond the breasts to other parts of the body. It most commonly spreads to the bones, liver and lungs, but it may also spread to the brain or other organs.
And while there is technically no cure for metastatic breast cancer, there is a wide variety of treatment options used to battle the disease including hormone therapy, chemotherapy, targeted drugs, immunotherapy and a combination of various treatments.
In a previous interview with SurvivorNet, Dr. Elizabeth Comen, an oncologist with Memorial Sloan Kettering Cancer Center, explained how she tries to manage breast cancer when it has progressed to a later stage.
“With advanced disease, the goal of treatment is to keep you as stable as possible, slow the tumor growth and improve your quality of life,” she said.
The American Cancer Society reports that there were more than 3.8 million U.S. women with a history of breast cancer alive at the start of 2019. Some of the women were cancer-free, and others still had evidence of the disease, but they also reported that more than 150,000 breast cancer survivors were living with metastatic disease, three-fourths of whom were originally diagnosed with stage I-III. And with ongoing advancements in treatments and options out there today that can dramatically reduce systems, there are many reasons to be hopeful.
Advocating for Your Health
As we’ve seen in the case of Hardy, it’s always important to pay attention to the changes happening to your body and ask professionals why.
“I didn’t have any lumps in my breasts and had no idea anything was wrong,” Hardy said looking back on her diagnosis. “There was a small lump near my collarbone, but I had just thought it was a knot in my muscle.”
You have every right to insist that your doctors investigate any possible signs of cancer, other avenues for treatment or the potential of a different diagnosis. And if you simply don’t know what’s causing a change to your body, you should still seek professional help. You never know when speaking up about a seemingly unimportant issue can lead to a very important diagnosis – cancer or otherwise.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn’t feel right.
“I wanted my doctor to like me,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you’re getting the care and attention you need.
Another thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.