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Allison Rosen (Colorectal Cancer Survivor)

Allison Rosen (Colorectal Cancer Survivor)

It started with a stomach problem

One night, after dinner with friends, I felt like my food was stuck inside me. My bowel habits had also become noticeably different over the last few weeks. But I chalked it up to the food I had been eating or possibly a stomach bug. Finally, when it was obvious to me that something wasn't right, I reached out to my gastroenterologist, who ordered an X-ray. Initially, she had me drink something to help move what they thought was a blockage out of my colon.

After a few days of minor relief, the same feeling of food being stuck inside me reappeared. I went back to the doctor, and we decided it was time to schedule a colonoscopy since it had been a year and a half since my last one. When I awoke from the procedure, my mom told me what my doctor had said. There is something weird growing inside her colon and it is blocking the path. The doctor had done biopsies, and she didn't think it was cancer, but she had no idea what it was.

The diagnosis changed my life forever

On June 7, 2012, I was diagnosed with colorectal cancer. My life as I knew it was changed forever. The irony of it all was that I worked in cancer research and had been doing so for seven years. I was all too familiar with what people go through when fighting cancer. Being so young and naive, I was confused about how this could happen to me, I only knew older people who had colorectal cancer, I didn't think young people were at risk. Through the tears and whirlwind of emotions of the next few days, I was determined to fight and beat the disease. I had a lot of life left to live.

Treatment was not easy

I had a combination of chemotherapy and radiation for five and a half weeks. I had a little bit of a break, then I had surgery, and then I had chemotherapy again. And unfortunately, I have had a few extra surgeries along the way. But if something came up during chemotherapy, they would give me some medicine or treatment. If something came up during radiation, they would give me medicine to help with that. So they really know what might happen, anticipate what might happen, and they give you medicine like nausea meds, pain meds, all sorts of different medicines to go along the way.

After two years with the temporary ileostomy, and after several long discussions with my surgeon, I made the hardest decision I have ever had to make: to make my ileostomy permanent and go under the knife again to remove my failed J-pouch, clean up adhesions, and excise all residual rectal tissue. This was a complex, major surgical intervention involving multiple specialists. This was in December of 2016. Today, I am back to work and regular life again, with a little extra baggage, my permanent ileostomy.

Screening is important

I go around talking and telling my story because screening did save my life. If I hadn't realized something was wrong and seen my doctor, I am confident I wouldn't be here now talking to you. And I just want people to realize that it can save their lives, it is not that bad of a screening, you know, a method to have. We didn't even go into the fact that you don't even have to do a colonoscopy to be screened, other screening modalities are easy, affordable, at home, you know, stool-based tests that you can do as well. But screening saves lives. And then, unfortunately, if you are diagnosed, you are not alone. There are organizations and support groups that can be there for you and people within the organization can connect you with other people and your voice, your story can be heard and help save lives when you are ready, but also the support that you need, they can help you find the resources that you need.

Support was tremendously helpful

The treatment was very difficult, but I had an amazing support system. I had an amazing care team, family, and friends. And they were there every step of the way. With the support of my family, friends, and work, I faced the biggest obstacle I had ever encountered in my life. I knew it wouldn't be easy, but I was determined. I knew a little about colorectal cancer, including that chemotherapy, surgery, and radiation were all in my future.

I am cancer-free now

Six years after my initial surgery, I am cancer-free and living life to the fullest. The biggest thing I kept telling myself was to stay positive and that I could conquer anything. Along the way I lost friends who were not there for me, sometimes didn't know how I would survive the week and dealt with fertility and body image issues. But with my doctors and amazing support system, I got through it all, I can proudly call myself a survivor.

Life after cancer 

 I still struggle daily with side effects related to my cancer, but those seem very small compared to what I have already dealt with. Anyone who knows me knows that cancer has not stopped me from doing anything. If anything it has motivated me to do more. I am a nine-year survivor, and I am living my best life possible with my ostomy. But at the beginning, it's not as easy as, Okay, this is no big deal.  And this is why I got involved in the coalition. I met my first patient survivor when I went to that race when I was first diagnosed, and they just understood what I was going through and they helped me get it. They were a perfect stranger, but they helped me get through some of the hardest times throughout my treatment because no one I knew at that time had gone through what I was about to go through or what I was currently going through. 

Message for others 

I tell my story to anyone who will listen to open their eyes to the fact that cancer can happen to young adults when they least expect it. Helping others has helped me heal from all I have gone through over the years. I volunteer my time on committees for young adult cancer patients, for groups working on effective patient experience, and for policy work at the state and national level. I utilize both my work experience and personal battle with cancer to help clinical staff deliver and patients receive the best care possible.

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