Featured Survivor Story:
Por Vallerie A. Malkin
“I do not wish melanoma on anyone,” says Tonia Sylvester, a 56-year-old retired school teacher who has lived with the disease for the past nine years.
Tonia, who resides in Michigan, has a matter-of-fact attitude that belies her sensitive disposition. She is stoic when she discusses the technical details of her melanoma, yet vulnerable when she talks about the emotional aspects – like having to tell her parents she was ill.
She will forever be thankful that before they both died – her mother in 2017 and her father in 2018 – she was finally able to report the good news that she was cancer-free.
There are no guarantees that Tonia’s melanoma won’t return, but she takes her luck one day at a time.
Si ves algo, haz algo
It was 2011 when Tonia learned that a quarter-sized mole on the calf of her right leg was malignant. She had discovered the growth a full year before, but ignored it and hoped it would go away.
What kept her from getting it checked out?
“Fear of what it could be,” says Tonia, who admits she wasn’t a “huge fan of doctors” and considers herself the “poster child” for what not to do when you find a strange mole on your body.
“It was very dark and asymmetrical,” she explains, “and I ignored it for way too long.” When the mole started to spill over its margins into a “muffin top,” she knew it had to be looked at.
“When I finally got my butt to a dermatologist at the end of May, I scared the daylights out of her,” she explains. Tonia was referred immediately to a general surgeon, who scheduled resection surgery in early June.
As she was wheeled to the operating room it began to sink in: “The fact I might have cancer finally clicked,” she recalls. They removed the mole and as much tissue around the margins as they could and sent it out for biopsy.
“I had heard of melanoma, but did not know the back story,” says Tonia, who had an even bigger worry on her hands: her parents. They had already dealt with a sick child when her brother fought testicular cancer at age 27.
“My mother was younger and in better health and able to help him when he needed her,” says Tonia. “Now my mother and dad were older and facing health issues of their own.”
When Tonia met with the dermatologist in mid-June to go over the results of her biopsy, she handed her the pathology report, which described Tonia’s condition as melanoma. She was stunned.
Tonia’s dermatologist referred her to the Michigan Medicine Comprehensive Cancer Center in Ann Arbor, which was affiliated with the University of Michigan.
The Fight Begins
Tonia had a supportive work environment and two “sisters” – Sonia (by blood), and Setta (her closest friend), who came with her to every doctor’s appointment from there forward.
She began working with the highly respected surgical oncologist, Dr. Alfred Chang: “He is a wonderful man and I trusted him with my care completely.”
In early July, Dr. Chang performed her second surgical resection to take more margins, and conducted a sentinel lymph node biopsy.
She went back to work the day after surgery, but her legs began to swell from standing on them all day, so she took five sick days to recuperate, then returned to her fifth graders.
In mid-July, the results of her biopsy showed she had Stage III melanoma. In August Dr. Chang extracted lymph nodes from her groin area, which she said was far more painful than the resections because they had to go so much deeper.
Tonia says her resilience is hereditary: “I have kind of a high threshold for pain from my father.” Still, removing 15-20 lymph nodes was “a bear” even for Tonia, who had to rely on a walker for a few weeks, turning it backwards because that was the only tolerable position.
One of two drainage tubes was removed a week later, but the other had to be left in for two more weeks until the fluid retention subsided.
There was bad news: 75 percent of Tonia’s lymph nodes came back positive for melanoma. Tonia returned to the doctor the Friday before Labor Day to get the second drain removed and another mole was spotted outside the surgical site, so the doctor scheduled another resection for October.
While she was healing from the surgery, the medical team noticed a cluster of tiny little brown spots on her lower leg, which is referred to as melanoma satellites; some punch biopsies determined the melanoma was spreading.
Drill, Baby, Drill
In November after an MRI scan of her brain turned up clear, blood work was ordered and a full-body PET scan lit up at her right collar bone, her right breast, and the femur of her left leg.
Tonia’s doctor ordered a bone biopsy for her femur using CT scans to target the spots that had lit up on the PET scan. Then she did something unorthodox: “I wanted to be in control of my body again, so when they wanted to give me sedation, I said, ‘No, I don’t want to pump more stuff into my body.’”
The manual drill goes into the bone to extract the cells, but the head needed to be changed once because it became dull. The surgical team kept offering her sedation but Tonia dug in: “If I need something, I will tell you … I know my body.”
Later that month, after her medical team reviewed all recent test results, she was told by her medical oncologist that her melanoma had advanced to Stage IV. “That scared the hell out of me,” says Tonia.
It was time to think about alternatives: “They were chasing the melanoma with surgery, but surgery wasn’t getting it. I told my sister, ‘I think it’s time we started treating it from within my body,’”.
Tonia was referred to Dr. Christopher D. Lao at the same hospital and in mid-December, she was tested for the BRAF gene (about half of all melanoma patients have the BRAF gene mutation), and she was BRAF positive.
The BRAF gene is an acquired mutation that occurs on a cellular level within the tumor – it is not handed down from one family member to another.
On the upside, Tonia’s BRAF positive status made her eligible for the targeted therapy Zelboraf (vemurafenib) which had just been approved by the FDA for Stage IV melanoma in August. Prior to August, it was only used in clinical trials. The great thing about this treatment is that it can be taken orally at home.
“God was looking down on me,” says Tonia.
Tonia’s side effects were manageable, though by Christmas a warm, itchy rash appeared from head to toe. Treatment was stopped, steroids were prescribed, and when the rash was gone, Tonia resumed taking Zelboraf.
Another complication of the drug was de-hydration, so Tonia learned to be fastidious with her water intake. Doctors would keep her on the targeted therapy five more years. Because she found the side effects of treatment manageable, Tonia resumed work in mid-January of 2012.
Back To School (and Life)
Although she could have taken early retirement due to medical issues, Tonia says she needed to be doing something besides sitting home thinking about melanoma. She wanted to go back to work.
“When you’re body isn’t 100 percent, sometimes you just try to focus on dealing with what’s in front of you,” explains Tonia. “Mentally, getting in front of the kids in a totally different, non-medical environment helped me.”
In preparation for her return, her close friend talked to the children in the class to prepare them to see their teacher whose eyebrows had disappeared. To disguise the thinning hair on her scalp, Tonia bought bucket hats that she coordinated with her wardrobe.
It was a rough winter with Tonia catching every virus in the school, but she says she loved being with the kids again.
She had another checkup in March and another PET scan, and was showing improvement: “I was praying, ‘Please God, at least no more new spots.’”
Tonia saw the doctor again in June. Another PET scan showed even more improvement. The spot on her breast wasn’t shrinking with the targeted treatment though. She would return in three months to see if anything had changed.
In August, Tonia had a mammogram and was disappointed to find out there was a small tumor the size of a pea behind her right nipple where the milk ducts are; two biopsies were scheduled, one for the mass, and one for the ducts.
That week Tonia was told she had breast cancer unrelated to the melanoma. “When it comes to cancer, I call myself an overachiever,” jokes Tonia.
She saw Dr. Chang again and elected to have a double mastectomy so that she would not have to deal with any more cancer in her breasts.
“I knew I’d still be Tonia with boobs or without boobs,” says Tonia. Surgery was scheduled the day before Labor Day.
At the end of August, true to character, Tonia got things in order before she went to the hospital. She set up her classroom, met with the substitute teacher, briefed her co-workers, attended all the in-services, wrote letters to be sent home with students to the parents, and attended a parent open house.
Then she had one final test at the hospital, and headed to her mastectomy.
Once again, Tonia opted not to take any post-op sedatives; she took Tylenol over the counter and relied on the nerve blocks on both sides of her chest that had been put there by the surgeon.
The doctor was very confident when he met with her sister that the lymph nodes he removed were not riddled with cancer. He did not think Tonia would require chemotherapy. She was thrilled to tell her parents the preliminary good news.
In mid-September after another PET scan, she learned her breast cancer had only been a Stage I and that there were no new developments with the melanoma. She was put on the breast cancer preventative Tamoxifen for five years and told to see a medical oncologist for checkups.
Tonia will never forget December 14, 2012, because that’s when she was able to tell her parents that she was melanoma- and breast cancer-free.
NED is a Cancer Patient’s Best Friend
In 2014, she retired from teaching and was able to take care of her parents until their deaths in 2017 and 2018. Doctors had taken her off of targeted therapy in October of 2016, and in September of 2017, she ceased the Tamoxifen.
Until a cure is found for melanoma, there is always a chance of recurrence, but the efficacy of treatments has improved significantly, increasing the quality of life and longevity for melanoma survivors like Tonia.
Today, Tonia sees a doctor every six months and has her blood work checked. For the last three years she has been having one brain MRI, and she gets a full-body PET scan once a year. She also sees a dermatologist once a year for a full-body check.
Any spots she has had removed since her initial diagnosis have been benign.
Tonia continues to stay connected with children by volunteering once a week at the local elementary school: “I like being back in touch with the kids without all the stress and responsibilities.”
She also likes to crochet hats for sick children at the University of Michigan’s C.S. Mott Children’s Hospital.
What has she learned from having melanoma?
“I guess I’m stronger than I thought I was,” says Tonia. “That comes from my mom and dad – they were very strong people. They taught me by example.”
Is she doing anything different since her diagnosis?
“I’ve become more active in keeping my body healthy,” says Tonia. “I am obsessive about physical activity – I was a couch potato!” These days, Tonia usually jogs on a mini-trampoline a couple of hours a day five or six days a week.
Although she was never a sun worshiper, Tonia makes sure she is covered head to toe when she goes outside. She has adopted a plant-based diet and no longer eats meat.
Tonia’s Advice to New Melanoma Patients
When you are diagnosed with melanoma, Tonia recommends finding a good medical team first and foremost, but she also suggests finding a mental health professional and nutritionist. It’s important to have a good support team outside the medical arena as well, says Tonia.
But her best advice for new patients is this: “Don’t let a melanoma diagnosis run your life. Run your OWN life.”
For Tonia, it was helpful not to ask doctors for a prognosis and just do the work of getting better: “If they would have given me a prognosis right at the start, it could have done more harm than good because I’m a worrier.”
Adds Tonia, “And remember to breathe. That was my motto when I was in treatment, I’d tell myself, ‘Just breathe, Tonia, breathe.’”