This Woman's Lower Back Pain Turned Out to Be Stage 4 Rectal Cancer
This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
I'm no stranger to health issues. At 19, I was diagnosed with ulcerative colitis, an inflammatory bowel disease similar to Crohn's disease that causes diarrhea and abdominal pain. People with ulcerative colitis also have a higher risk of colon cancer because the disease can lead to changes in the colon lining. So I always knew that having my colon removed to prevent the possibility of colon cancer was a strong likelihood.
During a routine colonoscopy when I was 27, my doctor found precancerous changes; he actually said I had one of the worst colons he's ever seen. To prevent those precancerous changes from progressing to cancer, he removed my colon. That required me to live with an ostomy bag—a pouch connected to an opening in my abdomen that collects the waste that would normally be routed through my colon.
After that surgery, I went about my life for several years. I had regular checkups with my gastrointestinal specialist while working as an assignment editor for TV station in Rochester, New York and waitressing or tutoring kids on the side. Seven years later, however, I started feeling pain that would changed my life forever.
A sudden sharp back pain
It was Fall 2014. At my waitressing job, I bent over to pick up a box of bottles for the bar and felt a very sharp, stabbing pain in my back. I chalked it up to getting older (I was now 33) and didn't think much of it. But the pain stayed with me and become progressively worse, evolving into a dull ache I'd feel while sitting, driving, and even trying to sleep. I couldn't sit down comfortably for more than a few minutes at a time. So I visited my primary care doctor to see what was going on.
My doctor had me do lots of stretching exercises and then said she thinks I "pulled a muscle" in my sacrum—the triangular bony structure in the lower back that's also known as the tailbone. It seemed like a really difficult part of the body to hurt, but I accepted her diagnosis. She prescribed me a mild muscle relaxer to ease the constant ache.
That weekend, I was supposed to visit my family two hours away. I said to my mom, "There's no way I can sit in the car for that long." I simply couldn't do it. The muscle relaxer wasn't doing a thing. So I called my doctor's office, telling them I needed something stronger. This was when the opioid crisis was really brewing publicly, and doctors weren't giving out certain pain medications like they used to, which I understood. The nurse I spoke to told me to give the muscle relaxer a little more time. I did make the drive to see my family that weekend and got through it, but I was definitely in a lot of discomfort.
A late-night trip to the ER
A few weeks later, I noticed that I was really altering my behavior to accommodate this pain. When I drove, I would position my body to the side so I wouldn't put a lot of pressure on the right side of my butt and my lower back, where the pain hurt the most. When I sat down in a chair, I would turn a little bit very gingerly. I also tried to lose some weight. The weight loss wasn't drastic, but it seemed like it was coming off easier than in years past. It was also harder to get comfortable at night. I tried to grin and bear it, thinking it was going to get better. Then one night the pain was just raging, so I got up and drove myself to the hospital.
At the ER, they ran a few tests. I was told I had a rectal abscess, where a cavity in my anus became filled with pus. It's a very painful condition that's been linked to ulcerative colitis, and I would need surgery the next day to stop the pain and prevent it from getting larger. Obviously I wasn't happy to hear that, but it sounded like they were on the right path. I was given pain meds to sleep in the ER overnight, and I finally started to feel relief mentally and physically.
The next morning, I had a small surgical procedure where a needle was stuck in my rectum to drain the abscess. My surgeon, who's very well-respected in Rochester, told me the abscess was pretty bad, and it was possible that it could come back. Roughly three weeks later when the pain and discomfort started again, I knew not to wait. I went back to the surgeon for another draining, but the abscess just kept returning. Around the fourth visit, I knew I couldn't go on like this. Toward the end of that visit, my surgeon came in and told me after a more thorough exam that he believes he found a tumor.
News you can't prepare for
I was shocked, but I also remember saying to him, "I knew it." It all made sense. Everything that I was experiencing crystallized in that moment. He wasn't sure if it was malignant and said I had to wait eight days for the results to come back. It ended up being exactly what I had feared: stage four rectal cancer.
During the eight days I waited for those results, I would tell myself I had cancer. I kept trying that positive diagnosis on, trying to get acclimated and prepare myself fully. I needed to get used to the idea. I felt confident going into that appointment, knowing that I had prepared myself. Yet when my doctor actually said "You have cancer," I remember grabbing the arms of the chair I sat in, feeling like I had been knocked backward. I was not prepared at all. You just can't prepare yourself for that. I don't care if it's a tiny mole or a giant brain tumor, you're just never prepared to hear the words "You have cancer."
I wanted surgery immediately, but it wasn't that simple. My tumor was the size of a softball, and it pressed against a number of nearby organs, including my vagina. I needed chemotherapy and eventually radiation to shrink it down for what would be a major 10-hour surgery to remove what remained. After removing the tumor, a plastic surgeon would have to rebuild my vagina, since getting the tumor out would require taking a part of my vagina. On the bright side, I often joked that I'd have a "million dollar vagina" thanks to cancer.
To make things even worse, I would have to go to a major cancer hospital, like one in New York City or Boston, where I knew no one, because my oncologist said I needed the biggest guns possible to fight this.
Two years of chemo and radiation
I knew my disease was serious, and going through chemo was just the half of it. It left me with cracks all over my feet and made walking painful, so I'd have to bandage and bind them for comfort. It felt like I had paper cuts along my fingernail beds. If I touched something acidic like a tomato, my skin would burn. When I cried, the tears felt like they were burning my face. I had spontaneous nosebleeds without warning. The inside of my mouth became so sensitive that even bland food tasted as if it were covered in hot sauce, like I was chewing razors. In total, I did three round of chemo, which took roughly two years.
Radiation was a lot easier to deal with physically but much more emotionally taxing, as it sent me into early menopause. I started having hot flashes, waking up drenched in sweat with my hair sopping wet. I'd be extremely hot and extremely cold in the same minute. Nobody wanted to ride in a car with me because I was so particular about the temperature. I had to have a hot drink and a cold drink near me constantly. I was emotional all time time. I remember one time seeing a guy driving like an idiot—and I followed him for blocks so I could yell at him! I felt like a hormonal teenager all over again. I spent five weeks going for radiation treatment, including pelvic radiation, which is typical for rectal cancer.
"I'm not going to let this kill me"
By Spring 2016, I'd completed chemo and radiation at different cancer centers between New York and Boston, and I was ready to have the surgery at University of Rochester Medical Center to finally remove the tumor. That's when doctors discovered the cancer had spread to my liver and lungs, and it could no longer be surgically removed. I had gone from finally being in a place to have surgery and move on from cancer. Then with the news that the cancer was inoperable, I was told that there's nothing I can do but try chemo again to try to buy time. To make things worse, my mom passed away that April, a few days before my 35th birthday.
It was really hard losing my mom. Even in my first bout of health issues with ulcerative colitis, my mother was right by side. She'd stay at the hospital with me. She nursed me back to health, all while she was dealing with her own COPD and lung cancer. For a while, we thought we were both going to die at the same time. I would apologize because I was too sick to do anything for her. We were both were useless to one another except for emotional support. Her death added a whole other level of grief.
A novel cancer treatment
Back in Rochester, I underwent genetic testing for my cancer. No genetic link was found, meaning this type of cancer didn't run in my family. I also went for genomic testing, through Foundation Medicine, looking at mutations in the tumor itself. That's when my oncologist suggested I try immunotherapy, a type of cancer treatment that works with your immune system to fight off the cancer.
Immunotherapy was still new at the time, and I didn't really know anything about it. I asked what would happen if I don't do it, and my oncologist said I would have at most two months to live, which rattled me to my core. I kept telling my doctors 'This cancer is not going to kill me, I'm not going to let this kill me," so I had to do everything I could to make that come true.
My immunotherapy treatment involved a short infusion, similar to chemo. It had very few side effects; they were similar to that of the flu. It was easy, actually. The treatment worked so well that the tumors shrunk—especially the rectal tumor. We saw results in two weeks. One year consisting of two immunotherapy treatments have extended my life.
Now my doctors encourage me to see my cancer as more of a chronic illness instead of a death sentence. I outlived the initial predictions. Once I got to my five-year point, my tumors had shrunk so much that I'm able to live with them. I felt such a sigh of relief. I'm 40 now, an age I didn't think I'd live to see. Since the five-year survival rate of stage four rectal cancer is abysmal, my goal was just to get to 40. Now I feel so cautiously optimistic that I'll make another decade at least.
Life with cancer
Aside from having cancer, losing my fertility to pelvic radiation is something I still wrestle with. That has been the most painful thing, honestly. I said I would do anything to fight my cancer, but I always wanted to be a mother and didn't want to jeopardize that. I wanted to freeze my eggs, but my team said I simply didn't have time; I couldn't delay treatment and had to start immediately. Taking away my chance to be a mother was the cruelest thing cancer did.
However, immunotherapy gave me back my life. I started working full-time again after four to five years dealing with cancer. I have two young nephews that I help take care of, sometimes for a whole weekend. I'm not who I was before cancer, but I'm the best I've been since cancer.
Right now, my cancer feels far in the background. I know the tumors are still there, but they've remained shrunken. I would love for them to be gone, but I don't know if it's going to happen, so I just live with it. I haven't had to have any immunotherapy treatments since Winter 2017. My doctor gets more and more confident after my regular scans, telling me my life is being extended more and more.
I don't like to think my primary care doctor made a mistake when she diagnosed a pulled muscle. I still see her and I trust her, because she did the best she could with what she knew at the time. Most people wouldn't conclude that back pain is cancer. When she found out about my diagnosis, she called to apologize to me, telling me how bad she felt that I was going through this, offering up anything she could do. She was also my mother's doctor, and she encouraged me to fight like her. I give her a lot of credit for that.
Because I had health issues at a young age, I've always been grateful for the good things in life, so I really don't take things for granted. I don't make the most of every single second, but I surely make the most out of more of them than ever before. Now I'm happy just to hear a bird tweet simply because I can hear it. I'm elated when the sun shines. Even on bad days I'm mostly happy, because I'm alive to have had that bad day.
To anyone suffering from mystery symptoms and looking for the correct diagnosis, you are your own best advocate; you have to listen to yourself if something is nagging you or doesn't feel right. Speak up, because no one else is going to do it for you. You're not being selfish if you fight for yourself. Keep making noise until you feel like your needs are being addressed.
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