The diagnosis was terrifying, and the following surgery was intensive, but the look on her doctor’s face when he walked in is the moment Theresa Siefker still remembers.
At her follow-up appointment after surgery, the question on everyone’s minds was whether the aggressive cancer on Siefker’s face had spread. But her doctor’s smile told her all she needed to know.
“I don’t often get to give good news,” he told her.
Months later, she still remembers that relief with a catch in her throat.
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She also has the barely noticeable scarring on her face reminding her of the significant surgery she had to remove Merkel cell cancer from her face, a serious, aggressive cancer that she luckily caught early.
Both Theresa and her husband Bob Siefker have survived cancer, and both credit their recovery to catching the disease early.
Bob Siefker, 74, was diagnosed with prostate cancer in 2004, the No. 2 killer in men after heart disease.
Theresa Siefker, 71, was diagnosed in 2015 with Merkel cell cancer, a very rare, but very dangerous form of skin cancer with a high rate of spreading to other parts of the body, recurrence and death.
Both are now huge advocates for people to be aware of what is happening with their own bodies. If you see or feel something that is off, get it checked out, they said.
“Early detection was key for both of us,” Bob Siefker said.
“If it hadn’t been for early detection, one of us probably wouldn’t be here.”
On a whim, Bob and Theresa Siefker had decided to attend a health fair at their church in 2004, which was offering a PSA, or prostate-specific antigen, blood test. He decided to take the blood test that detects a protein made by prostate tissue that can indicate if a person has cancer.
The next day, he got a call from the lab that his level was elevated and he should see his doctor. Two weeks later, his PSA level was a little higher, and he was referred to a urologist.
An exam didn’t find anything unusual, but the doctor ordered a needle biopsy of 12 locations on his prostate. The result indicated cancer in three of the 12 sites.
“Nothing prepares you for that,” Bob Siefker said.
The diagnosis came early in the summer, and surgery was scheduled for Sept. 26. Bob Siefker was terrified to wait that long. He asked to be on a waiting list, but no one ever cancels surgery to remove cancer.
His doctor assured him that his cancer was very slow growing, and waiting a couple months wouldn’t hurt him.
“We prayed a lot about it and said we’re going to trust the doctors,” he said.
Finally, the surgery date came. Doctors removed his prostate, and testing showed the cancer had not spread anywhere else in his body, he said. He initially had to do PSA testing every six months, then once a year, and since none of his results have shown elevated levels, he is back to seeing his regular doctor, he said.
The surgery, which was done laparoscopically in a da Vinci robotic-assisted surgery, went smoothly. Bob Siefker, a retired engineer, caught a glimpse of the machine when he was wheeled into the operating room and immediately wanted to know how it worked.
Once his surgery was done, he contacted his surgeon, Dr. John Scott with Urology of Indiana, and asked to check out the machine, which was relatively new at the time. Scott offered to have him come to the training center at Indiana University Health Methodist Hospital.
Scott showed him how they practiced using the machine, using rubberized plastic with a loop of wire at the top where they would need to feed surgical thread through. And Bob Siefker told Scott how the machine worked from an engineering perspective, he said.
Living without a prostate isn’t much different than living with one, except slightly more urgency with urination at times, Bob Siefker said.
And while no one likes a prostate exam, he makes sure to keep up with his and encourages other men to do the same.
“It’s a little personal to have a rectal exam, but you get over that fact, this is a doctor,” he said.
Cancer screening guidelines have continued changing over the years, which has made it more confusing for patients, with past information suggesting the PSA test — the one that detected Bob Siefker’s cancer — is not valuable, Scott said.
Currently, the recommendations are that men in good health between the ages of 55 and 69 should have an exam and PSA testing, Scott said. But years ago, the recommendation was age 50, he said.
In his 29 years in practice, Scott has seen plenty of different information and different sources, which divides doctors. Now, some are not as diligent as they were 20 years ago. That means less screening is being done and it is less consistent, when doctors who have seen the impacts of prostate cancer should know the value of appropriate screening, Scott said.
Often men say they feel fine, and don’t want to get the testing. Scott shares the current guidelines and asks them to decide, but makes sure they understand they are responsible for managing their own health, he said.
Some of his best advocates are former patients, like Bob Siefker, who can share first-hand why men need to get checked, he said.
For Bob Siefker, talking about his experience could help someone else, and that makes sharing his story worthwhile, he said.
After her cancer diagnosis, Theresa Siefker cringes when she sees young women outside sunbathing or going to tanning beds.
“If they only knew what they were doing to themselves,” she said.
In November 2015, she noticed a small spot on her cheek that resembled a pimple, but also looked bruised with a blue tint. At the time, she was in Ireland and made a note to schedule a doctor appointment.
After she got home, she went to the dermatologist who thought the spot looked like a cyst, and tried to take it off. When that didn’t work, she was sent to see a doctor who specialized in the Mohs technique, where layers of the skin are removed in an attempt to get all the affected skin. The spot looked like a cyst but deeper.
But that afternoon, while she was at a funeral, she got a call that she needed to come back. The doctor told her that what they removed wasn’t a cyst and had been sent for testing, but it looked like Merkel cell cancer and they needed to remove more.
Theresa Siefker began looking through her calendar, and was told to throw her calendar away: she needed to come back now.
“We don’t mess around with Merkel cell cancer,” the office told her.
During the appointment, the doctor felt an enlarged lymph node and knew she needed to see an expert. Within an hour of the call to Dr. John Goldenberg, a head and neck surgeon with IU Health, she had an appointment that day.
Bob and Theresa Siefker began to see the urgency and soon learned why: Merkel cell cancer is one of the fastest growing cancers and can spread quickly.
Immediately, she was scheduled for a full body scan to see if the cancer had spread anywhere else. And she was told she needed surgery immediately.
By then, it was mid-December, and everyone was trying to schedule procedures before the end of the year. The struggle would be finding an operating room, but one was found and her surgery was set for Dec. 28.
The surgery was intensive, with an incision that would run down from her ear to her neck and her skin peeled back to remove any cancer in her face and any affected lymph nodes.
Bob Siefker looked up the procedure on the internet, but he didn’t show his wife, fearing it would scare her.
“I didn’t see any point in showing her. I just tried to tell her how extensive it was,” he said.
The next step in her treatment, such as radiation or chemotherapy, would be depended on what was found during the surgery. They were told to come back a week later.
That week was tough, waiting for the pathology report and knowing how serious the cancer was — including carrying a high mortality rate, Bob Siefker said.
Then came the appointment, the smile from Goldenberg and the huge sigh of relief. The cancer hadn’t spread anywhere else and hadn’t gotten into any of Theresa Siefker’s lymph nodes.
Goldenberg doesn’t remember that moment, but notes that he is a serious guy with a serious practice, and if he did smile, it was significant.
“I don’t smile very much, so when I do, most of my patients pick up on it,” he said.
Goldenberg has dealt with Merkel cell cancer several times in his career, and though it is rare — occurring in less than 1 percent of cases — it is very serious, with a high rate of spreading, coming back and killing patients. The typical skin cancer — a basal skin cancer — has a survival rate of 99 percent. Merkel cell cancer has a survival rate of 20 to 50 percent, he said.
“It is a particularly bad cancer to have,” he said.
The main treatment is surgery to remove the cancer. The procedure requires mapping out the cancerous spot and then also clearing the area 1 inch around it, so something that started out the size of a fingertip would require surgery on an area the size of a silver dollar in order to be sure to get all of the cancer, he said.
In Theresa Siefker’s case, the cancer was in a noticeable area — the middle of her face. The procedure, which took about two hours, consisted of removing the cancer and then reconstructing her face. The procedure was similar to a reverse facelift, where instead of pulling the skin back to stretch it, he had to bring it forward to fill the space he had cut out, he said.
Amazingly, she has only a small scar, which is healing up well.
“It’s just enough to remind me of how lucky we are,” Bob Siefker said.
Theresa Siefker now has to do routine follow-up exams and testing, looking for any other spots, including visiting the dermatologist a few times a year for a full body exam.
“If I have to go back to my doctor every three to four months for the rest of my life, I’m going to do it,” she said.
Catching the cancer early was key for Theresa Siefker, because she is now cancer free and didn’t have to undergo radiation. She likely wouldn’t be in that position had she waited six months, Goldenberg said. Addressing cancer earlier, especially such an aggressive form, leads to better survival rates, he said.
“It’s always easier to be dealt a straight flush than it is a pair of twos,” Goldenberg said.
In addition to regular checkups, Theresa Siefker also takes extra precautions in the sun. And she doesn’t just wear sunscreen; she also has protective clothing to wear when working outside and carries an umbrella to block the sun when she is out walking.
“It hasn’t kept me from going out in the sun, I just have to prepare,” she said.
She also is an advocate for self checks and not putting off going to see the doctor if something isn’t right. Decades earlier, a relative had noticed a spot on Theresa Siefker’s arm, encouraging her to get it checked out, and it turned out to be pre-melanoma, she said.
When she initially had the spot on her face looked at, she was told she could have it taken off or wait.
“Anytime there’s anything on the skin that’s out of the ordinary, even if it’s just a little cyst, get rid of it,” she said. “Until they do the pathology, doctors are just guessing.”
Name: Bob Siefker
Residence: Center Grove
Diagnosis: Stage 1 prostate cancer in 2004
Treatment: Prostate removal through robotic laparoscopic surgery
How cancer changed me:
“It made me much more sensitive to my mortality. The end is not an indefinite period away.”
What cancer taught me:
Praying may or may not mean you will be cured. “You accept what is happening as part of God’s plan, because God does have a plan for us.”
What I would tell someone just diagnosed:
Early diagnosis is essential. See your doctor regularly. And pray, he strongly believes in the power of prayer.
Name: Theresa Siefker
Residence: Center Grove
Diagnosis: Merkel cell cancer
Treatment: Removal of the cancerous tissue and surrounding tissue on her face
How cancer changed me:
“I avoid the sun like the plague.” It hasn’t kept her from going out in the sun, she just prepares with sunscreen, protective clothing and carrying an umbrella. It also puts you in touch with God, that one day you will meet your maker.
What cancer taught me:
The power of prayer helped us so much. We don’t know if we will be healed or what life holds, you just have to trust in God.
What would you tell someone just diagnosed:
Aggressively attack it. If you don’t feel your doctor is doing the right thing, get another opinion. Have hope. This is not the end.