Two weeks after Michelle Hughes, then 34, gave birth to her son in 2021, she collapsed on the floor. Her husband, Ty, rushed her to the hospital. A CT scan revealed something worrisome: Hughes had numerous inoperable lung and liver tumors.
“I had an incurable cancer and it’s an ultra-rare sarcoma called epithelioid hemangioendothelioma, EHE for short,” the now 37-year-old from Prince Edward Island, Canada, tells TODAY.com. “(I was) devastated and heartbroken thinking that now I have Stage 4 cancer.”
Doctors told her there were few treatments for this cancer and she’d likely only live three to five years. Then she met with a sarcoma expert who shaped how Hughes has been living her life since then.
“She said, ‘I’ve seen people with your cancer. Some do really well. Some not so well. But I know a patient living for 20 years with your cancer, and I have hope for you,’” Hughes recalls. “It completely shifted my entire mindset, and I thought there is hope out there.”
Sharp pain eventually leads to diagnosis
When Hughes was pregnant with her first daughter, Juliet, in 2016 she began experiencing an unusual ache.
“I developed this awful pain on my upper right side (of her abdomen), and it was a really sharp pain that came out of nowhere,” she says. “(The doctors) said basically what I was describing … was a gallbladder issue.”
At the doctor’s request, she underwent an ultrasound, and it showed a hemangioma, a non-cancerous, vascular mass, on her liver. But it didn’t explain her symptoms because doctors told her “it really shouldn’t be the reason for the pain,” Hughes says.
Doctors decided to monitor it and planned to scan it again a year later. But after Hughes gave birth to Juliet, she threw herself into motherhood.
“(I) was so happy to be a mom because our first baby will stillborn,” she says. “I put her needs first and I ignored the pain that would come and go over the year.”
A year later, she underwent the ultrasound again and doctors saw the hemangioma remained but it had not grown. Doctors decided again on monitoring. Life continued. Hughes and her husband underwent IVF and had another baby, Adeline, now 5. The mass on her liver did not grow, but “the pain got significantly worse,” Hughes says.
It became so severe she visited the emergency room, but doctors could not explain her pain.
“(The hemangioma) wasn’t the reason for my pain again,” Hughes says. “They said, ‘We’re not sure what’s going on, but you’ll be fine.’”
Life continued and Hughes became pregnant again. But at 35 weeks, her placenta ruptured, and she delivered son, Hatton.
“It was quite a serious matter,” she says. “But I recovered fine.”
Soon after Hatton was born, Hughes collapsed on the floor at home. After that, doctors discovered the tumors spotting her lungs and liver and diagnosed her with epithelioid hemangioendothelioma. At the time, her son was 3 weeks old, and her daughters were 2 and 5. While Hughes held her infant in her arms, Hughes’ mom asked the doctor how long her daughter had to live.
“He said, ‘I’ve never even heard of this cancer, but we’re going to find the very best and we’re going to see what we can do for her,’” she says. “I looked at him and said, ‘My son’s never going to remember me.’”
The drive home felt long as Hughes grappled with what sounded like a death sentence. Doctors ordered a PET scan to understand where the cancer spread in her body. She had 17 liver tumors, numerous lung tumors, a tumor in her left thigh and a tumor in her left knee.
“They said, ‘(We) don’t have a treatment option for you, unfortunately, and we’re going to see what happens,” she says. “It was very scary.”
Another oncologist told her she’d live another three and five years at most.
“I just looked at them with heartbroken eyes,” she says. “He said, ‘I’m sorry. I’ve seen this cancer before, and my last patient died within in a few months.’”
Hughes finally met with a the sarcoma specialist who took a different approach. She had treated patients with EHE before and some of her patients really thrived. That doctor changed Hughes outlook on having a rare, incurable cancer.
The doctor told Hughes, “You’re just going to live your life.”
“I took that slogan, and I ran with it,” she says. “If I’m going to live, I need to set myself up for success, and I need to live for my children.”
After becoming very ill with a common cold, Hughes doctor put her on an “experimental treatment” and within two months her cancer became stable and was no longer growing. Because the tumors weren’t growing, Hughes was able to set herself down a new path.
So, Hughes decided to do everything in her power to be the person who thrives with this cancer. In January 2022, she began walking then running. Eventually, she taught herself how to bike and swim. Working out helps her grapple with the pain.
“Exercise does help but my mental and physical pain because it’s a mental game as well, hearing that you have Stage 4 cancer that is unpredictable, that can turn aggressive at any time,” she says. “The mental pain that has on me as a mom of three beautiful children and the wife of a husband I adore. I need to exercise.”
While exercise, healthy eating and other habits boost her health, Hughes embraces activities that makes her “feel alive.”
“If you want happiness and joy to happen you need to make it happen,” she says. “You can’t sit back and wait for it to happen.”
Epithelioid Hemangioendothelioma
Epithelioid hemangioendothelioma is a rare cancer that occurs mostly in people ages 30 to 50, according to the National Cancer Institute. Worldwide, only one in one million people are diagnosed with this cancer.
It forms in the cells that make the blood vessels and can be found throughout the body, but most often flourishes in the liver, lungs and bones.
Signs of EHE include:
- Cough
- Breathing troubles
- Abdominal discomfort or pain
- Fever
- Pain
- Swelling
- Unexplained weight loss
- Difficulty moving
- Red or blue skin lumps
- A cough with blood
- Broken bones
There’s no standardized treatment protocol for EHE because of its rarity, the NCI notes. People with the condition could receive surgery, chemotherapy, radiation, immunotherapy, targeted therapy or a procedure that cuts off the blood flow to the tumor. In some cases, doctors simply monitor the growths, as they are doing for Hughes. If her tumors were to grow, however, she could become more ill.
Living ‘life out loud’
In July 2024, Hughes stopped the experimental treatment she had been receiving at the advice of her doctor.
“The medicine started to turn toxic in my body and I had dealt with a lot of side effects from this medication over three years, but I was able to work past them,” she says. “(But) they became so severe.”
The medication caused mouth sores that made eating and drinking painful. Now, Hughes is only on anti-inflammatories for pain. Doctors were going to conduct a scan in October to see if her cancer grew but she recently was in the emergency room with severe abdominal pain (the reason is still unclear). The masses in her lungs, liver and knee grew from anywhere from 2 to 5 millimeters but the growth is so slight that it could be within the margin of error.
“We’re waiting to see what the sarcoma specialists say,” she says.
On the third anniversary of her cancer diagnosis, August 20, 2024 Hughes finished a triathlon.
“I did my own personal triathlon, running out of the hospital in Moncton, New Brunswick where I was diagnosed,” she says. “I ran 21 kilometers, hopped on a bike and biked 103 kilometers and then I jumped in the ocean and swam home two kilometers to my beach, to my children to give them another example of cancer not defining me.”
Still, Hughes knows she’s lucky and sometimes she faces survivors’ guilt that she’s doing well.
“I am beyond grateful that I can do the things that I do with Stage 4 cancer. I never take any moment for granted,” she says. “I always say choose hard. And people think choose hard means running and doing triathlons … that’s not what choose hard means.”
To Hughes choose hard means to “do what makes you feel joy.” She also wanted to “live my life out loud” and began sharing her life social media. While she started living out loud to create memories for her children, she also did it to change others’ perspectives of Stage 4 cancer.
“I wasn’t dying. I’ve been living,” she says. “I wanted to live my life out loud so my children can go back and see all the beautiful things that we did as a family and how I worked to stay alive as long as my body and soul could stay alive.”
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