Karin N.

My mother died of cancer when she was just 48 years old, so I have always been diligent about having annual physicals and routine mammograms (even though she did not have breast cancer). I have always taken good care of myself. I eat healthily, walk and hike in the mountains.

But two weeks after my annual physical in 2012, I was doing a breast self-examination and noticed that something didn’t feel right. I called my doctor immediately, and she told me to come in the next day. A mammogram did not reveal any abnormalities. The next day, I had an ultrasound, which showed suspicious areas. That led to a biopsy. Two days after the tissue samples were taken, my doctor called. Initially, she wanted me to come to her office, but I told her I wanted the results right then on the phone. Knowing I had some medical knowledge from my work history, she agreed. She told me that I had infiltrating lobular carcinoma breast cancer.

The diagnosis was somewhat shocking, but because of my mother’s history, I was not completely surprised. I knew that I needed to stop for a moment and think, and take some time to digest the news. I wasn’t scared, but I was concerned. How was I going to get through this?

A moment of hesitation

It didn’t take too much time to realize that the first step toward eradicating the cancer was a mastectomy. Even though I didn’t know the extent of the cancer yet, I knew that I would have a mastectomy. My husband and I had a trip to Mexico planned that started two days after I was diagnosed, and my doctor assured me that I could wait until we returned to start treatment because the cancer was a slow-growing type.

After our trip, I had a mastectomy and then went to see a local oncologist for a consultation. Afterwards, it was my husband who raised the idea of seeking a second opinion. I agreed immediately. Soon after we arrived home that day, we happened to see a commercial for Cancer Treatment Centers of America^® (CTCA)* and decided to call.

The CTCA^® representative I spoke with gave me all the information I was missing, and he took his time on the phone. He answered every question. He informed me about scheduling a consultation and what I needed to do next. I felt so much more at ease just from that first call, and knew that I had found the place where I wanted to be treated.

Treatment and challenges

During my mastectomy, the surgeon found that the tumor was 7 centimeters, larger than was previously thought. A lymph node biopsy had revealed that two were microscopically positive for cancer. Seeing those results, the surgeon removed 21 lymph nodes, a precautionary measure that would soon have some serious consequences.

At CTCA Chicago, I had six rounds of chemotherapy. I also worked with a naturopathic oncology provider and a nutritionist to identify a diet that would be beneficial to keep me strong during this time, as well as supplements and vitamins that might help, too.

But soon after completing this treatment, my arm and hand started to swell. After having so many lymph nodes removed, the lymph fluid had nowhere to drain, leading to lymphedema, a common side effect of this procedure. A physical therapist at CTCA recommended that I wear a specialized glove.

In the meantime, my CTCA oncologist recommended that I find a local radiation oncologist near our home in Indiana because I would need about 37 radiation treatments. I found a local radiation oncologist and a local physical therapist, but the lymphedema worsened.

After the glove, I tried wraps designed for lymphedema treatment. When that didn’t work, I tried a compression sleeve. A pump helped keep the swelling down a bit, but I was still extremely uncomfortable. The lymphedema was also disheartening. Here I was, having been through a mastectomy, chemotherapy and radiation; I was done with cancer treatment, and yet, this pain would not go away. It was like a constant reminder of cancer, and it also made daily life very difficult. I was self-conscious about my swollen arm and hand. I could not fold laundry or make the bed. I could not type, which I need to be able to do at my managerial job with the postal service. It was embarrassing and exhausting.

Finding a solution in treatment advances

Shortly before a consultation with my surgeon for breast reconstruction, I started wondering what other treatments might be out there for lymphedema. I saw that some people were trying a new procedure called lymph node transfer. At that next appointment, I asked my reconstructive surgeon whether someone could do it at CTCA, and he told me someone was joining that fall who performed these procedures. That September, I underwent the lymph node transfer surgery.

The procedure is exactly what the name implied: Lymph nodes are transferred from one place to another. For the breast reconstruction surgery, my surgeon performed abdominal free-tissue transfer, in which tissue from my lower abdomen was used to reconstruct my left breast. During that procedure, another surgeon also moved adjacent lymph nodes from my lower abdomen and upper groin to my left underarm. 

Three days after the surgery, I saw veins in my hand that I had not seen in a year and a half. The swelling diminished week by week. Soon, my ability to grip and fold and do other routine actions with my hands, and movements we all take for granted returned. The pain is virtually nonexistent—occasionally I feel a slight twinge, but that is nothing compared with how I had been feeling. Life is back to normal. Four weeks after the surgery, I was able to return to work.

Finding the right option

Discovering that I had options for cancer treatment was very empowering for me. Realizing that I can get a second opinion, as many opinions as I want, really, was vital to my recovery. I found a place that gave me the knowledge that I needed. Later, when it came to addressing the lymphedema, CTCA was right there at the cutting edge, offering the right treatment.

I was also touched by how the providers there treated my husband. He was my caregiver, and it meant so much that he was included in everything. My Care Team was concerned about his welfare, too. That’s supportive care for real.

Today, I can play games with my twin grandchildren. I can play bass and keyboards again in our basement sound studio, and I can high-five my co-workers. Not long ago, all of these movements were impossibly painful. Sometimes, I still wear the compression sleeve, but this will reduce over time.

I’m grateful for the care I received at CTCA and for the support I had from my family and friends during my treatment. That support really strengthened me, and has left me wanting to help others. Many people experience lymphedema as a side effect of cancer treatment, and I want to tell as many people as I can that there is a solution. We don’t have to live in pain. I want to see others glowing with happiness, as I am after the care I received.

* Cancer Treatment Centers of America® (CTCA) is now City of Hope®, working together to expand patient access to personalized, comprehensive cancer care. Because this patient testimonial was written and published before CTCA® and City of Hope joined forces, mentions of legacy CTCA locations have not been updated in the interest of maintaining the patient’s original voice and story details.