Fortunately, I was allowed to proceed with the trial, since the imaging results were inconclusive. But my surgeon recommended that I get my ovaries removed at the same time as my stomach, just to be safe, since this type of cancer is known to spread there.
The surgeon I met with was reluctant. She said I had a bad prognosis, and that removing my ovaries — which, to her, looked healthy — would eliminate my ability to have kids. I thought, I don’t take this decision lightly, but I feel like this is the best thing to do to prolong my life. I figured, I can handle menopause at the age of 33 — I’m okay with that.
On January 30, I had my ovaries, fallopian tubes, and entire stomach surgically removed. It was a success, but it turned out the growth on my ovaries was, in fact, cancerous. The surgeon apologised to my husband at the hospital, but never communicated this news to me. I think she was embarrassed.
Shortly after, my other surgeon contacted me to discuss the pathology report. The cancer, he said, was “very angry” — it expanded throughout my stomach and climbed further into my oesophagus. It was detected in 27 lymph nodes, which indicated it metastasised to other parts of my body. I wasn’t cancer-free at all — instead, I was dealing with an extremely aggressive form.
I was in shock, but focused on what was next. I talked to my support group, and they helped me jot down follow-up questions. When I met with my doctor again, he said it seemed like the initial chemo did nothing and he wasn’t sure if it made sense for me to take more. But my medical team decided it was best for me to finish the trial, so I did the final three more rounds, which took about a month and a half. This time, it caused intense burning and excruciating pain in my abdomen, I think because I was still recovering.
After surgery, I had to relearn how to eat. I was such a foodie before I was diagnosed with cancer, but now I have to be so mindful of what — and how — I eat. My oesophagus is directly connected to my intestines — it’s a straight line. I don’t have a stomach, which would tell me that I’m hungry or full, so I have to be very careful to not consume too much or too little, making it much harder to maintain my weight. I have to chew very thoroughly to help my intestines digest food and get regular B12 injections and iron infusions, since it’s harder for my body to absorb nutrients. It’s been a massive change, and I’m still getting used to it.
On April 11, I had a follow-up endoscopy to examine how the cancer responded to the trial. The doctors took one biopsy and said that everything looked good. But the surgeon didn’t get good margins during my surgery, which suggests there are microscopic cancer cells remaining in my oesophagus. I also did a Signatera test to see if the DNA from my tumour was also in my blood. I tested positive, which indicates I still have cancer, but it’s unclear where in my body it is.
Currently, I’m in this strange position where I know I still have cancer, but it’s not being treated. It feels weird to just leave it alone. I’m going to get a full-body scan to see where it might have spread in my body, but imaging tests aren’t great at picking up my type of cancer. Still, I’m hoping it will give me some answers so that I can press my team for other treatment before it gets worse.
I sometimes wish I asked my doctor about cancer back when this all started — maybe they would have ordered the endoscopy sooner to get me an earlier diagnosis. Throughout this entire journey, I’ve had to fight for my medical team to run more tests — some of which they weren’t even aware of. But I did my research, talked to my support group, and explained to the doctors I saw how different tests might help. I’ve always been the type to embrace life, but I’m also a planner and very focused on what’s next. Right now, I feel so lucky to have been paired up with an amazing team that helped me get involved in the trial and continues to listen to me. I’m so blessed to be here.
This article originally appeared on SELF.