Advocating for Your Health and Finding Support
- Stephanie Clark, 34, struggled with back, neck and shoulder pain, grew uncomfortable sleeping on her left side, noticed her breasts were fuller, developed a lump on her back, began sweating excessively, lacked energy and had a low libido for years. She said it was dismissed as a weight issue or anxiety.
- Clark was eventually diagnosed with a desmoid tumor, a noncancerous but serious growth that can occur in the connective tissue and most often appear in the abdomen, arms and legs that has dramatically impacted her life.
- Instead of letting it get the best of her, she’s choosing to support others with similar rare conditions and encourage others to advocate for their health. Clark has found support throughout her journey by creating a Facebook community.
- One of our cancer experts says healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources. So, listening to your body and being your own healthcare advocate are a must.
- There are many people out there for cancer warriors to be vulnerable with, if they'd like. And whether that's through social media or simply connecting with your closest family and friends, it's worth it to at least try. One cancer warrior told SurvivorNet her TikTok community helped her immensely during her battle with a rare cancer.
Clark, 34, spent a long time thinking she was the problem. She struggled with back, neck and shoulder pain, grew uncomfortable sleeping on her left side, noticed her breasts were fuller, developed a lump on her back, began sweating excessively, lacked energy and had a low libido.
Read More“I was just stunned,” Clark said. “I remember having this overwhelming sensation, at 32 years old, that I wanted my mom.”
Clark would soon discover that she had a desmoid tumor. Although her tumor was not cancerous, she would still need extensive treatment.
According to the Mayo Clinic, desmoid tumors are noncancerous growths that occur in the connective tissue and most often appear in the abdomen, arms and legs. Some desmoid tumors are slow growing and don’t require immediate treatment, but others grow quickly and require surgery, radiation therapy, chemotherapy or other drugs. Even though they aren’t considered cancerous, these tumors can be very aggressive and act like cancers by growing into nearby structures and organs. That’s why people with desmoid tumors are often cared for by cancer doctors, or oncologists.
For treatment, Clark underwent three months of oral chemotherapy, but the tumor who she named “Hank” continued growing. Five months of intravenous chemo, when chemotherapy drugs are given through a tube inserted into a vein, did cause it to shrink in half. But she also needed several operations to freeze parts of the tumor off.
“Hank” has since eroded six of her ribs and grown a tendril that pushes into her backbone and causes extreme pain. For ongoing treatment, she takes about 27 different daily medications. She may need surgery later down the road, but the complicated procedure would be “a gamble” since her tumor could still grow back. She’s currently unable to work, and her parent’s care for her teenage son.
“I’ve had to dig deep and become my own advocate to deal with the members on my team who I don’t feel give me the time of day,” she said of her ongoing health battle. “I’ve had to learn how to stick up for myself and demand better care.
“And that’s a challenge, especially when you don’t feel well when you’re already in pain.”
One thing that’s helped her through all these challenges has been Facebook. After her diagnosis, she created a page to raise awareness for desmoid tumors and support others with rare disease. Now, she makes posts about advocating for yourself, explains how to improve your mental health and writes poems to “Hank” for her online community. She also volunteers for clinical trials, mentors people who’ve been newly diagnosed and raises awareness for rare diseases.
“Will an effective treatment or cure be found before my desmoid tumor gets the best of me?” she said. “I don’t know. I hope so, but I’ve made the choice to not sit back idly while this desmoid tumor continues to invade my healthy tissue.”
“For me, the question is not, ‘Why did this happen to me?’ The question I ask myself now is, ‘What am I going to do about it?'”
Advocating for Your Health
Navigating the medical world can be daunting. And Stephanie Clark's story showcases the unfortunate necessity for self-advocacy both before a diagnosis as well as after.
Jenny Saldana, another woman who's spoken up about advocating for yourself, knows what it’s like to me dismissed by doctors. The breast cancer survivor says she was told, "you can't keep coming back here taking up resources for women that really need them" when she was trying to get her diagnosis.
"The squeaky wheel gets the oil," she said as advice for others.
Advocating For Yourself While Navigating the Medical World
Evelyn Reyes-Beato also urges others to advocate for their health. The colon cancer survivor says it’s important to "get knowledge" ahead of appointments so you don't feel intimated by your doctors.
Her advice? Make physicians "earn that copay."
Speaking from a healthcare professional’s perspective, Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, says healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources. So, that means listening to your body is a must.
"The truth is you have to be in tune with your body, and you realize that you are not the statistic," he said.
Be Pushy, Be Your Own Advocate… Don't Settle
Dr. Murrell says not every patient will "fit into" the mold, so it's important to "educate yourself and be your own health care advocate."
"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. Murrell said. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
Finding the Support You Need
In addition to advocating for yourself, it’s also crucial to find the support you need during an emotionally taxing health battle. For Stephanie Clark, creating a Facebook community proved to be very useful. For Kate Hervey, TikTok was the answer.
Hervey was diagnosed with synovial sarcoma, a rare type of cancer that tends to form near large joints in young adults, after seeing her doctor for tenderness and lumps in one of her legs. Being a young nursing student at Michigan State, Hervey was shocked.
Her cancer battle began during the COVID-19 pandemic, so she had to scale back on her social activities as a high-risk patient. That's when she turned to TikTok as a creative outlet and inspired thousands.
Inspiring College Student, 20, Builds Community on TikTok Sharing Her Cancer Journey During COVID-19
"One thing that was nice about TikTok that I loved and why I started posting more and more videos is how many people I was able to meet through TikTok and social media that are going through the same things," she says. "I still text with this one girl who is 22. If I'm having a hard time, I will text her because she will understand. As much as my family and friends are supportive, it's hard to vent to someone who doesn't know what it's really like."
Hervey is now cancer-free, and she says she couldn't have done it without the love and support of her TikTok community.
"I feel like I've made an impact on other people, and they have made an impact on me through TikTok, which is crazy to say,” she said. “I can help people go through what I've been going through as well."
So, while sharing your story to a vast TikTok audience might not be your thing, it's important to consider opening up to others during your cancer battle. Even if it's with a smaller group, friends, family or a therapist, you never know how much the support can help you and even help those you share with unless you try.
Learn more about SurvivorNet's rigorous medical review process.
