Pushing for Answers
- Despite excruciating back pain and four dismissals from doctors, 22-year-old hairstylist Nothando Nhliziyo fought to be taken seriously before scans revealed the truth.
- She was diagnosed with metastatic angiosarcoma, a fast-growing and incurable cancer that had spread to her spine, pelvis, and beyond, and the National Cancer Institute explains this rare cancer is treated with surgery, radiation, and chemotherapy.
- As Nhliziyo prepares for palliative treatment, she hopes to raise awareness for rare cancers that often lack visibility and treatment options, and also put an emphasis on getting multiple medical opinions.
- Second opinions provide benefits such as ensuring diagnosis accuracy, revealing more effective treatments, and giving patients peace of mind in healthcare decisions.
- Some health insurance companies will cover the cost of a second opinion. Still, it’s a good idea to find out if yours does before you visit a new doctor, as some insurance companies have stipulations on the extent of coverage they will provide. Keep in mind that you don’t need to stop at a second opinion. Provided that you have the time and financial resources.
“I couldn’t sleep. I couldn’t turn over. I couldn’t get out of bed. I would crawl to the bathroom. My back made crunching noises, I had spasms, and my whole body would stiffen. It was pain beyond anything I could describe,” Nhliziyo told The Sun.
What they found was devastating: lesions across her spine, pelvis, and other parts of her body. The diagnosis was metastatic angiosarcoma, a rare, aggressive cancer.
“Life has drastically changed in so many ways, physically, mentally, and emotionally,” Nhliziyo said in a GoFundMe post.
According to the National Cancer Institute, angiosarcoma develops in the inner lining of blood and lymph vessels. Though it can occur anywhere, it most often appears in the skin, breast, liver, or spleen. Fast-growing and relentless, it is typically treated with surgery, radiation, and chemotherapy.
“Life has drastically changed in every way—physically, mentally, emotionally,” Nhliziyo said.
The moment she received her diagnosis was shattering. “I just wanted to vanish. Both my parents burst into tears. I didn’t know what to say. It was traumatic.”
Now, as she prepares for palliative treatment to manage her pain, Nhliziyo is determined to use her voice.
WATCH: With Palliative Cancer Care, The Sooner the Better
Palliative care is a type of care that’s meant to address the symptoms and side effects that your cancer or its treatment brings. These symptoms may include psychological experiences such as stress and fear, physical experiences such as pain and discomfort, and financial difficulties.
She wants to raise awareness for rare cancers like angiosarcoma, which often receive far less attention and funding than more common cancers.
“I want people to know about angiosarcoma and how it affects lives. Because it’s rare, treatment options are limited. That needs to change,” she said.
Helping You Understand Late-Stage Cancer Care
The Palliative Care Nhliziyo May Receive
“Palliative care means the care or support of symptoms in patients with terminal diagnoses, like cancer, for example,” gynecologic oncologist at Stanford University, Dr. Lisa Diver, tells SurvivorNet.
“It’s not the same thing as hospice,” Dr. Diver adds.
WATCH: Palliative care improves your overall treatment by focusing on comfort.
The main difference between palliative care and hospice care is that during hospice care, no efforts are made to cure the illness, while palliative care may also provide treatment “intended to cure” the illness.
Some oncologists have adjusted how they talk about palliative care because of the common misconception compared to end-of-life hospice care.
Dr. Ishwaria Subbiah, a medical oncologist and palliative care physician at the MD Anderson Cancer Center, shared a fascinating experiment from 2009 (published in 2011). Rather than trying to eliminate the deeply ingrained end-of-life connotations of the term “palliative care,” Dr. Subbiah’s MD Anderson colleagues changed the name altogether, rebranding their palliative care center as the “Supportive Care Clinic.”
Within a year of changing the name, MD Anderson’s Supportive Care Clinic saw its referrals (patients from their medical oncologists and tumor-directed cancer treatment to access its symptom management services) rise 41 percent. “And it has been consistently increasing in the double digits ever since,” Dr. Subbiah said.
Why Self-Advocacy in Healthcare Can Be Life-Saving
When patients actively advocate for their health, it can lead to earlier diagnoses, broader treatment options, and ultimately better outcomes—especially when initial symptoms are overlooked or dismissed.
Part of this advocacy means not settling for a single medical opinion. Persistence matters: revisiting your doctor, pushing for answers, and seeking additional perspectives from other healthcare providers can be crucial steps in the journey.
WATCH: The value of getting a second opinion
Dr. Steven Rosenberg, Chief of Surgery at the National Cancer Institute, underscored this point in a conversation with SurvivorNet:
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to date with the latest information is important,” Dr. Rosenberg said.
His words are a powerful reminder that having the right medical team can make all the difference—and that begins with being your own strongest advocate.
Getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. “So there may be a conflict of interest if you present to a surgeon who is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer
- You have a rare type of cancer
- There are several ways to treat your cancer
- You feel like your doctor isn’t listening to you, or isn’t giving you sound advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
- Your insurance company wants you to get another medical opinion
- Your cancer isn’t improving on your current treatment
WATCH: The Importance Of Getting A Second Opinion: Tara Lessard Shares Her Cancer Story.
Tara Lessard is another woman who refused to follow the lead of just one medical opinion. After her 2015 stage 4 ovarian cancer diagnosis, she underwent 21 rounds of chemotherapy and battled severe side effects, including neuropathy that left her temporarily wheelchair-bound.
Unwilling to settle for standardized treatment, Lessard sought multiple opinions—ultimately choosing a cancer center that offered tailored care, including a spleen removal, alternative chemo, and a PARP inhibitor that kept her cancer-free for a year. Despite recurrence in 2018, Tara’s key message was clear: your opinion does matter when it comes to your own cancer treatment. So, get a second opinion if you want one.
Some health insurance companies will cover the cost of a second opinion. Still, it’s a good idea to find out if yours does before you visit a new doctor, as some insurance companies have stipulations on the extent of coverage they will provide.
Keep in mind that you don’t need to stop at a second opinion. Provided that you have the time and financial resources, you may want to consider getting a third or a fourth opinion. Just don’t get so many opinions that your treatment options overwhelm you.
With each new doctor you visit, bring a copy of your:
- Pathology report from your biopsy or surgery
- Surgical report
- Imaging tests
- The treatment plan that your current doctor recommended
Helping You Cope With an Unexpected Cancer Diagnosis
If you are facing a cancer diagnosis, your emotions are likely to run high, which is completely normal. Psychiatrist Dr. Lori Plutchik says emotions are often fluid when coping with a diagnosis.
“The patient or person going through the stressful event should accept that emotions will be fluid. You may feel fine one day and then feel a massive wave of stress the next. It’s also important for those you look to for support, whether that’s a therapist, friends, and family, or both, to understand the fluidity of stress-related emotions,” Dr. Plutchik said.
WATCH: How to cope with complex and changing emotions.
If a stressful event affects how you think and feel, it may be time to seek mental health treatment. This could mean traditional talk therapy, medication, changing lifestyle habits (like exercise and diet), seeking a support group, or many other approaches.
SurvivorNet experts suggest that women who need a little extra help coping with a breast cancer diagnosis.
- Let your family and close friends know, and let them help. So many cancer survivors tell us they want and need support, but are often too preoccupied to make specific requests. Urge those close to you to jump in with whatever practical help they can offer.
- Keep a journal. It can be extremely cathartic to let those feelings loose on paper. Grab a pen and a nice journal and chronicle your thoughts throughout the day.
- Join a cancer support group. Groups in nearly every community offer opportunities to connect with others going through a similar journey. You’ll learn constructive insight from others who can tell you what to expect and how to stay strong on tough days.
- Consider seeing a therapist. Ask your doctor to refer you to a therapist so you can discuss your fears and concerns in a safe space. Often, vocalizing your thoughts and feelings rather than internalizing them can provide relief.
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