By Deb Song
I just want to thank everyone for the overwhelming response to part one of the video series on my cancer journey at Rush.
Testing and diagnosis have been key parts of this wild ride I am currently on.
Like most women, I dreaded the idea of having to take time out of my busy schedule to get a mammogram.
In my career as a media relations expert covering breast cancer stories, I have filmed many mammograms.
They looked uncomfortable and unpleasant.
The doctors and technicians are so nice and make such a huge effort to make it seem less scary, but let’s be real. Who wants to have their breasts examined and squished in a machine? Definitely not me.
So, when it was time for me to schedule my first mammogram, I wasn’t really up for it. I could have made every excuse to put it off or ignore it.
I had a good excuse, too! I just had an unrelated major surgery and was recovering from it. I had a huge abdominal scar that hurt and was still healing, and I had just started back at work. Did I really want to be back in the hospital for more tests and procedures? I just wasn’t in the mood to do it, and I didn’t want to take the time off to get a mammogram.
But I scheduled my mammogram anyway and headed to the Regenstein Breast Imaging Center at Rush.
Why? Because I believe strongly in screening, early detection and prevention. It’s what I have helped to promote in my role as a media relations specialist covering breast cancer stories for 18 years.
So I went ahead with it. My first mammogram was not bad. It didn’t hurt. It wasn’t awkward. I wasn’t scared. My technician was friendly and calming.
This first mammogram confirmed that I had dense breast tissue. The problem with having dense breasts is that it’s hard for a mammogram alone to detect cancer. That meant I needed to have an ultrasound too.
Diagnostic radiologist Lisa Stempel, MD, did my ultrasound. She explained what she was looking for and put me at ease as she did the test.
The ultrasound identified a couple of questionable spots on my right breast and one on my left. So I was scheduled to have the three spots checked and underwent three core needle biopsies.
Within a few days after my biopsies, I received my pathology report that said the spots were benign growths. The imaging team then recommended that I come back in a few months for a follow-up.
After going through a major surgery a few months earlier, three core needle biopsies, multiple mammograms and an ultrasound, I was tired and glad to get a break.
I got back to my normal life. I was recovering well from my previous surgery, getting stronger, staying active and working hard. I didn’t have a worry in the world.
Six months after my first baseline mammogram, ultrasound and core needle biopsies, I got the letter reminding me that it was time for my follow-up imaging.
I remember sighing deeply and not wanting to be bothered with making the appointment. I had put it off for a few weeks, telling myself, “Oh, I’ll schedule it when I have more time.”
I made excuses. In the meantime, I was working, working out seven days a week, hanging out with friends and doing self-care such as manicures, pedicures and haircuts.
Then, during a high intensity interval training class, I thought, “Wow! I’m working this hard for my health and I can’t even be bothered to go for my six-month follow-up?”
I scheduled my follow-up the next day.
Before I went in for my six-month follow-up, I had noticed a spot on my right breast that seemed sore. I never noticed it before. I thought it might be scar tissue from one of the previous core needle biopsies I underwent. I made a note to bring it up to my imaging doctor.
At the six-month follow-up, I had another ultrasound. At this visit, diagnostic radiologist Janice Dieschbourg, MD, was taking care of me. I pointed out the spot I recently found and was convinced it was scar tissue from the previous biopsy. Dr. Dieschbourg sensed my concern and calmly said, “Let’s just take a look at it and compare to your previous ultrasound images.”
It turned out it was something new. At this point, she recommended an MRI and possibly another core needle biopsy. I wanted to cry. I had been through a lot of tests and a big, unrelated surgery. I just wanted it all to stop and go away. This was really starting to cramp my style!
She sensed my sadness and worry. She sat me down and said that we should just be thorough and make sure it was nothing. With the other markers and this new spot, she also recommended that I consult a breast surgeon.
I spoke with my breast surgeon Andrea Madrigrano, MD. She agreed with Dr. Dieschbourg and recommended the MRI to get a better picture of what was going on and that might tell us more.
The MRI did tell us more.
A ‘complicated’ case
It told me and my team of doctors that there was something there.
That there was something wrong.
This is the moment that changed my life.
I heard many times from my doctors, “Deb, your case is complicated.”
Working in media relations and covering breast cancer for 18 years, I knew what my doctors meant when they called me a complicated case, but I kept telling myself to stop making assumptions. We wouldn’t know until we did further testing.
I needed to undergo another core needle biopsy to confirm.
The testing and diagnostic phase can be such a daunting time. I felt anxious and worried. I couldn’t sleep. I couldn’t eat. I still went to work, worked out and saw friends, and I was pretending that everything was OK.
Waiting for pathology results was the toughest thing I have ever had to go through. I went through it by myself. I couldn’t bring myself to tell my parents. I didn’t want to alarm them. I told a few close friends and my boyfriend at the time.
Your mind swims with emotions and thoughts.
I would say things like:
- The first three biopsies turned out to be benign. I’ll be totally OK. This isn’t happening.
- If it turns out to be pre-cancerous, I will just continue to hide my diagnosis from everyone until it does become cancerous and then I will tell my friends and family. In the meantime, I have to keep my diagnosis a secret. I have to protect my family.
- If I have cancer, will my boyfriend break up with me?
- I guess this means I won’t be able to have a family or a future with someone.
I lost weight and sleep, cried and was stressed. I went through a phase of denial where I would tell myself:
- I can’t possibly slow down now.
- This isn’t happening to me.
- This doesn’t happen to people like me.
- I don’t want to die like my two cousins who had breast cancer.
Every day, I would continue to go to work and work out, pretending like nothing was happening. Then, I would go home and cry.
‘It is breast cancer’
I finally got the results, and it wasn’t what I wanted to hear.
The sample taken showed that it could be atypical ductal hyperplasia, which is precancerous tissue that can potentially be medically managed and watched, or that it could be ductal carcinoma in situ (DCIS), which is breast cancer.
I would need a lumpectomy to diagnose and stage me.
It turned out to be DCIS.
I had breast cancer.
Dr. Madrigrano said to me, “I’m sorry, it is breast cancer, but it is still within the ducts and we caught it super early.”
My care team told me the bad news that having a bilateral mastectomy (surgically removing both breasts) would give me the best fighting chance to live.
If I didn’t get my mammogram or continue to follow up, I would not have known I had something killing me. The cancer would have had more time to grow. It could have spread.
So with that, I strongly urge you to go get screened. Go to your follow-ups if you need them. Don’t make excuses. Don’t be afraid. In most cases, it really will be nothing.
If you think about it, a mammogram and ultrasound are pictures. We live in a culture of perfect selfies and pictures.
So take the time to get the ultimate selfie — a mammogram.
It’s the ultimate act of self-care. And it saved my life.
Deb Song is associate director of media relations at Rush University Medical Center.