About 5 months into living at Agahozo-Shalom Youth Village (ASYV) in rural Rwanda (one of the most incredible places, look it up!), at the end of April 2016, I felt a small lump in my right breast. I wasn’t looking for it and certainly never did self-exams because I was in my 20s but I happened to feel it while in the shower. It felt like a bean, hard but mobile, located on the outer part of my breast. I could feel it between two fingers and with slight pressure it shifted from side to side. It felt small so I didn’t panic, but of course, I immediately googled it. Dr. Google advised that it could be a cyst that may go away by my next cycle, so I decided to monitor and wait. I was 25 years old and felt perfectly healthy so I was expecting it to just go away on its own.
Fast forward a month later and I felt no change. I knew if I wanted to get it checked out, I’d have to make my way into the capital city of Kigali for an exam, but I had no idea where to begin. I’d never had a diagnostic breast exam before and had no knowledge of the Rwandan healthcare system.
Lucky for me, I had recently given a tour of ASYV to three Human Resources for Health (HRH) members who were Americans embedded in the Kigali health system. I reached out to one of them for advice and she recommended that I go to a relatively new diagnostic center. She said I could simply walk in and ask for an ultrasound, no referral needed. While she offered to go with me, I felt comfortable going on my own but I promised to keep her updated.
On June 10th, I took a motorcycle taxi (moto) from ASYV to the nearest bus stop, an hour-long bus ride to Kigali and then a moto to the Kigali house (a house ASYV provides for weekend use in the city). While I had taken this journey many times before, the reason for this visit stayed in the back of my mind. That Friday, my friend and I fumbled with Google Maps to try to guide our moto drivers to the diagnostic center.
After some missed turns, we finally made it and walked up to the entrance. It was a small, one-story building with a blue roof. To the left were some exam rooms, in front of me was a reception desk and payment desk, and to the right was a small seating area. I simply walked up, requested an ultrasound of my right breast, received a ticket and paid approximately $15. I sat and waited until it was my turn, my stomach twisting with unease.
Before long, I was guided into that first room on the left and the doctor quickly performed my ultrasound. I watched the monitor and paid attention to each picture he was taking but at that point, I had no idea what I was looking at. I feel like it’s human nature to try to interpret these types of things before receiving results – maybe so that we can prepare ourselves before we get news. Maybe because waiting makes us nervous. Maybe it’s simply because we like the puzzle and want to see if we were right in our predictions. I think it was a combination for me in this situation. The ultrasound was over before I knew it and they sent me back out to sit and wait. They said the results would be ready in 10 to 15 minutes.
As I sat and waited, I felt the urge to put my fingers on the lump and feel around. It felt reassuring to me that it wasn’t getting larger, so feeling it became a common occurrence. I sat there, resisting the urge because it would look just a little weird to start feeling myself up in public(!). Instead, I sat quietly and thought about the possibilities. My only link to cancer was my maternal grandmother. She passed away from breast and lung cancer (or breast that metastasized to the lungs, we’re not sure) at a very young age. That was in the back of my mind, but it still felt unlikely.
Just as they said, about 10 minutes later they called me back to a room. The doctor looked at me and quite plainly said that it looked suspicious and he recommended a biopsy. It was at that moment I felt I had early stage breast cancer and started to mentally prepare myself. It wasn’t shock or fear that ran through me, it was logistics. I’m an action-oriented person so I immediately wanted to figure out how to get the biopsy, get a diagnosis and figure out next steps. Mind you, I was still in Rwanda so that added another layer of complexity.
When I asked the doctor where to get a biopsy, he actually didn’t know. He called around and then just decided to send me to the local hospital. Another moto ride, straight to the hospital, where I took the biopsy referral. It was a Friday afternoon, so when I handed the paper over to the pathology department, they said they couldn’t perform the procedure until Monday morning. I paid and was told to come back at 8am Monday morning.
A whole weekend to spend in Kigali, all whilst thinking about the likelihood of me having breast cancer. That weekend felt like forever. I remember talking to my friend and trying to decide at what point to tell my parents. I was halfway around the world and my mom lost her mom to cancer so this would be her worst nightmare. Plus I didn’t even know for sure yet. I told my parents about the lump, the ultrasound and upcoming biopsy but I may have eased them into it. I told them the ultrasound was inconclusive rather than suspicious, as I didn’t want them to panic. How do you convince your parents you’re okay in this situation? I wanted to maintain control and protect the people around me as best I could. I’m an incredibly rational person in these situations and was not letting emotion take over at all.
In the meantime, I updated my HRH friend and she once again offered to come with me on Monday for the biopsy. This time I agreed, as I knew the support would help. I wasn’t really scared, I just had no idea what to expect with the hospital system and the procedure. It felt comforting having her with me. Quite quickly I knew it was a good decision to have her there. She came into the procedure room locked and loaded, making sure they were not skipping any steps for sanitation or otherwise.
It took three people to perform the biopsy, something I later learned is not the same as in the US. In Rwanda, I had one person holding my breast still, one person holding the ultrasound probe with a condom as the cover, and the third performing the core needle biopsy. They used local anesthetic so it didn’t hurt but I felt a lot of pressure from the man holding my breast as well as from the core needle biopsy. It sounded and looked a lot like getting your ears pierced. They placed the needle into the mass, shot the ‘gun’ that took the biopsy sample, and then removed the needle. It was over pretty quickly and we then went to the pathology results area of the hospital to discuss when to come back for results.
Here’s where things got a bit crazy. They told us that I wouldn’t get results for about a month. ONE MONTH. You think I’m waiting with the possibility of cancer for an entire month? Not a chance. I had no idea what to do. My HRH friend (or earth angel, as I like to call her), came to the rescue. She worked with many of these people and pulled the Muzungu (foreigner) card to get them to agree to about 7 days turnaround time. I’ll write an entire post about my discomfort with that and my privilege, because it’s too much for this post, but ultimately that reduction in turnaround time is what I needed.
Anyway, that was it for the time being. I left the hospital and took the moto, bus and another moto back to ASYV. I continued on with my normal duties, giving tours of ASYV and supporting the students. Only a couple people knew at that point and I wanted to keep it that way until I got results. Over the next 10 days, my spare moments were spent feeling the lump, thinking about breast cancer and preparing myself. At that point I felt like I had breast cancer, even without a proper diagnosis, and all the time I had thinking about it helped me prepare for the worst.