Meet Betty Leubner, salivary gland cancer survivor
Betty Leubner is a cancer survivor in every sense of the word. She has essentially lived with the reality of the disease for over half of her life. At 77, this is no small feat.
Betty keeps smiling through life’s challenges.
Betty was first diagnosed with salivary gland cancer on the right side of her mouth in 1967 at 37-years-old.
“I began to feel something between my cheek and gums about the size of a fingernail and experienced shooting pains which I later learned were from my trigeminal nerve.” After having oral surgery to excise part of the mass, Betty learned the diagnosis. “For whatever reason, the term carcinoma did not register with me, but when the doctor said, ‘You have cancer,’ I felt like the rug was pulled out from under me…like being socked in the stomach.”
Surgery was scheduled two weeks before Christmas with radiation to follow. Betty says it was the first Christmas she ever felt ready for in her life. She did not want to skip a beat, especially since she had a husband and four children to think about.
A custom sewer, Betty talks about making a dress for her daughter before surgery. “I remember crying while sewing because I didn’t know if I’d actually get to see her wear it.”
She then decided she couldn’t undo what was already done and focused on moving forward. “A calmness came over me and from then on I came to be the one comforting everyone else. My family and friends were coming to me for reassurance that everything would be alright. It takes a lot of energy to support other people through your own diagnosis.”
Betty and her 4 children enjoy a treat during their annual weekend together.
The tumor was the diameter of a baseball and an inch thick. Doctors told her it had probably been growing there for a long time, possibly even ten years.
Just after surgery, Betty began Cobalt Radiation Therapy, a very early form of radiation treatment, for six and a half weeks. Halfway through her radiation regime, she had to take a break because her mouth was so burnt it was painful to eat or talk.
Five years later, she was pronounced cancer free.
Betty moved on with her life with a renewed sense of gratitude. She began working full-time as an instructor for non-clinical nursing staff and started night school to earn her college education. “I took classes for almost 20 years and in 1982, at the age of 52, I graduated magna cum laude with a degree in education and an emphasis on community education,” Betty says with obvious pride.
But, 25 years after being told she was cancer free, Betty began to feel little pinheads on her tongue and cheek. “I knew it was a recurrence before the doctor even spoke. It was obvious when the receptionist whisked me into the room. No one talked or smiled. I’m not sure I was even surprised when the doctor finally delivered the bad news,” says Betty matter-of-factly.
It was at that point Betty was referred to Bruce Campbell, MD, a head and neck cancer surgeon at Froedtert and the Medical College of Wisconsin Cancer Center.
While a recurrence a quarter of a century later seems very unlikely, Dr. Campbell says it is not that surprising given Betty’s type of cancer. “Adenoid cystic carcinoma arises in the salivary glands and tends to have an odd behavioral pattern. It can lie dormant for years and then grow along the nerves adjacent to where the main mass was located. In Betty’s case, her tumor began growing again years later and became more aggressive.”
Dr. Campbell says that while initial treatments did seem to work, the area probably was not treated widely enough to completely kill all cancerous cells.
Over the next few years, Dr. Campbell surgically removed the nodules as they cropped up. Betty endured surgeries in 1997, 1999, 2000 and 2003 with further reconstruction in between.
“With some cancer patients, you can never tell they have been treated. But not with me, I wear my cancer on my face,” says Betty. Her inner strength shines through when she talks about her appearance:
“One day, I looked in the mirror and said, ‘Betty, you are not your face, you are so much more than that. I decided that I can laugh, smile and have a good time so that is what really matters.”
Years of surgeries became more than just a cosmetic issue. They took their toll and left Betty with a limited ability to open her mouth and little sensation on the right side of her face.
When Betty had another cancer recurrence in 2005, Dr. Campbell said honestly, “Betty, I could keep cutting and cutting, but you really won’t have much of a face left.”
He suggested she consider TomoTherapySM radiation treatments.
“We were backed against a wall and our current treatments did not make the best sense. We really had nothing, other than TomoTherapy, that seemed like a viable option to give Betty a chance of finally having this cured,” says Dr. Campbell.
Dr. Campbell explains that because Betty was already treated once with radiation in 1967, this would essentially be a re-treatment. Unfortunately, records were not kept of how much radiation Betty had received the first time around. Still, Dr. Campbell was confident this was her best option, “With TomoTherapy, there was a major shift in the mindset to re-treat. Our institution was involved in some trials with re-treatments. We found that we could give our patients, who did not have many options due to previous radiation, a new choice.”
Dr. Campbell continues, “TomoTherapy just made sense. Since this new technology is so tightly-focused, radiation is taken to the next level. This not only holds promise for cancer cure, but also for a decrease in side effects.”
Christopher Schultz, MD, a radiation oncologist at Froedtert and Medical College of Wisconsin Cancer Center, oversaw Betty’s TomoTherapy radiation treatment.
“TomoTherapy allowed us to deliver the radiation dose to the target that we needed to treat, while conformally avoiding critical structures that had been previously irradiated. We didn’t have another approach available that could do as good of a job at painting the three-dimensional dose,” says Dr. Schultz. “We could also eliminate set-up error by taking a pre-treatment CT scan just before the radiation treatment was delivered. This allowed us to use the smallest treatment field possible because we knew the patient was set up in the same position each day.”
Betty talks about the difference she remembers when being treated with Cobalt radiation. “In 2005, I was treated for about 6 weeks with TomoTherapy radiation and it made me realize how imprecise my Cobalt treatment probably was. Now, they make a mask and line up the fields so accurately.”
As for the TomoTherapy treatment itself, “I found it was not unpleasant,” says Betty. “I was told they weren’t certain how my body would respond since I’d had previous radiation and no one knew the exact dose. I had a little redness on my face, but nothing real serious.” Betty did have to take a short break around the 4th week of treatment, but she attributes that to simply spreading herself too thin. “I was preparing three meals a day for a church retreat so I became a little worn out and dehydrated. I guess I needed a reminder that whether you are getting radiation or not, your body is telling you to take it easy!”
Through it all, Betty has learned to take the positive out of her experience.
“The cancer is a gift because I don’t think I would have done a lot of the things I’ve done in my life. Every time something came up with cancer, I said it’s another gift. I learned to focus on the moment and the desired outcome,” explains Betty. “Of course, it didn’t come overnight and took conscious practice. If I thought of some dreadful thing like dying from cancer, I’d turn it around and say, I’m going to live with cancer. It’s really like taking baby steps… you just have to keep going.”
She has even gotten to know her caregivers on a more personal level and says that often her appointments end with talk of family and children.
Betty’s son keeps Mom laughing.
As Dr. Campbell puts it, “Betty is very memorable. It never fails that when Valentine’s Day rolls around, she drops off Hershey kisses for us. She is wonderful, like everyone’s favorite Grandma.”
Four children, 10 grandchildren and 3 great grandchildren later, you can tell Betty is proud of the family that has grown around her. Her husband died in 1995 and she remembers her son’s girlfriend saying, “Ms. Leubner, you’re the head of the family and your husband is the heart.”
Once every year, Betty and her 4 children spend a weekend together. She says they started the tradition by going to places that reminded them of the good times they had camping and traveling as a family growing up. Betty says, “Each of these children are individuals, not carbon copies of my husband or myself. For all of our likes, dislikes and agreements, disagreements, there is abiding love.”
Betty continues with check-ups every six months, and has remained cancer free since 2005.
As for the future, she says she is planning to live until 100.
“I do think you can make the choice to live life to the fullest. So, let’s just jump in, do it and not dip our toes in it. We all know we have limited time on this planet, but we don’t like to think about it. I know I have more life behind me than ahead of me, but I focus on what gives me joy and look ahead. It’s been a good life, it is a good life and I know it will continue to be a good life.”
