Breast cancer is one of the most commonly diagnosed cancers in American women. A diagnosis can leave you feeling unprepared for health and treatment decisions you have to make. It can also put unexpected stress on your everyday life, your family and your job.
At LBBC, we know one of the best ways to learn about living with breast cancer is by hearing from others who have been there. This blog is part of a series called What I Wish I Knew, which features people diagnosed with early-stage breast cancer in the past who want to share their knowledge with those who are newly diagnosed. What I Wish I Knew will update once a month.
Editor’s Note: In order to make sure the exact same spot is radiated during cancer treatment, your radiation oncologist identifies where small tattoos, dots of permanent ink about the size of a small freckle, will be placed on your body. Many women say that getting the tattoos feels similar to a pin prick. But sometimes, personal, religious or cultural reasons make getting tattoos of any kind unwanted.
On June 29, 2016, I got tattoos. I wasn’t expecting this. It caught me off guard.
I wrote a journal throughout 2016 detailing my medical appointments, reactions to treatment and everything I felt like expressing during my year of fighting cancer. My husband, Gerard, supported me through it all. I had stage III breast cancer, a mastectomy in December 2015 and four months of chemotherapy. Overall, I was fortunate to feel nurtured and comfortable with my doctors and other medical professionals. But when it came time for radiation, although I had a long consultation with the radiation oncologist, tattoos were never mentioned.
Up until radiation, all my treatment was at my local Kaiser Permanente medical facility. They have a wonderful team and approach for breast cancer patients. I felt fully informed and supported throughout my mastectomy and chemo treatments.
But for radiation, I was farmed out to a different provider. I felt the difference. My initial appointment to meet the radiation oncologist didn’t feel quite as warm. He was young. He was technical. He knew how to line up the angles on the computer. He showed me the areas to be radiated. But it felt like he was uncomfortable connecting with patients.
Once I started radiation, I was able to switch to a more experienced radiation oncologist, in the same office, and I was very pleased with him. The rest of the staff were all wonderful. Aside from this early episode, I moved on in peace. But at the time, working with the first radiation oncologist, I was upset. Here’s an excerpt from my journal written during that time.
Wednesday June 29, 2016 4:55pm
[Yesterday] Dr. A met us briefly to discuss what’s needed to start radiation. First on the list is a CT scan. He told us, “No contrast is involved. There will be no needles.” The CT scan is to do measurements. Dr. A needs that to make the plan for radiating the left breast and lymph node area.
We drove another 15 minutes on the freeway to Dr. A’s other office with the CT scan machine. (This extra drive was a surprise.) A few minutes after 3:00 we were on our way to get the scan done. We arrived by 3:15. I was taken in right away and rushed into the back. Gerard was told, “Stay in the waiting room.”
Once in the back room, I was told, “We’re setting you up for three tattoos needed for measurement purposes. Sign here please.”
What?!? I felt pressured. I had no time to think. We were also rushing to get back to take care of Gerard’s dad. I signed the paper. I wanted to get on with it and I didn’t think I had a choice. I was worn down, and eager to get radiation finally set up after various delays.
The technician poked me with a needle three times. This was after being moved back and forth in the big doughnut machine that is familiar to me from previous tests. This time there were no jackhammer sounds. I thought about the sound track for the pelvic scan a month or so ago. This scan for tattooing sounded like a washing machine.
When I was done, I came out and told Gerard about the tattoos. I told him, “They are supposed to be very tiny, like little freckles.” I was a little upset about it and so was Gerard. It’s against our religion to have tattoos of any kind. Why didn’t Dr. A mention the tattoos? We were talking about needles. It should have come up.
I showed my underarm area to Gerard. He got very upset. There was a lot of ink. “Why didn’t you insist on having them come get me when they told you about tattoos and asked you to sign more paperwork,” Gerard asked. I should have. (Looking back from now, I realize it’s always good to have a trusted someone with you when you go for new procedures.)
We asked someone else who worked at the office to look at the marks on me. The tech explained, “It’s extra ink that washes off.” He cleaned it, showing Gerard that the tattoos were actually very small. They can barely be seen. Gerard checked me again after my shower. He could see the tattoos are little dots like freckles.
Still, not being informed about this ahead of time at the consultation didn’t feel right. Our doctor spent considerable time telling us about the radiation routine before referring us to Dr. A. He never mentioned anything about tattoos. Gerard thinks there must have been some way to do this without tattoos. We should have been given an option, or at least an explanation for why this was necessary.
Tuesday July 5, 2016 8:17am
Radiation starts today.
First we saw Dr. A. Gerard had questions. Gerard complained about the surprise tattoo markers. Dr. A assured us, “There will be no more marks made.”
Right before my first treatment, Dr. A must have let the radiation therapists know not to do anymore tattoos. Instead, they used stickers. The first radiation treatment took about 30 to 45 minutes. Most of it was measuring and marking. After that, most treatments took only about 10 minutes. Every week or two, there was a recheck with more measuring and marking, but only once did it take as long as the first day.
Over a year later, a friend of mine needed radiation for breast cancer. She told me she insisted they use removable markers and no tattoos. The tattoos are not necessary. It makes it a little easier for the radiology therapists. Oh come on! The patient should have this information and the choice to make.
Today, I have no real issue with the tiny tattoos. They’re like insignificant little freckles. This story is about a bigger point.
There is a lot to deal with in the fight against breast cancer. If anything feels wrong or confusing in your gut while going through it, say something. Take charge. Learn all you can about your treatment and your options. Find your voice. That’s what cancer helped me do.
Teri Sulc was 55 years old when she was diagnosed with stage III breast cancer. You can learn more about her at her website and on her blog.
If you are recently diagnosed and need information about what to do next, be sure to check out our Guide for the Newly Diagnosed. If you want to participate in the What I Wish I Knew series, you can share your story with Living Beyond Breast Cancer.