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Living With Stage IV Colon Cancer, With Jana Downing

Jana Downing

Living With Stage IV Rectal Cancer, With Jana Downing

Jana’s Story:

I was diagnosed with Stage 4 colon cancer on October 30th, 2014 after having complained of rectal bleeding and thin stools to my primary physician for close to a year. Due to my age, 39 at the time, my symptoms were originally discarded as likely hemorrhoids and I was not referred for a colonoscopy until after a lot of time had passed and symptoms did not resolve. Once I had the colonoscopy, they found a near obstructing tumor in my sigmoid. An immediate CT scan revealed 3 tumors in the liver, one of which over 5cm, as well as several indeterminate lung nodules. I had just turned 40. I was urged to start immediate treatment to avoid colon obstruction. I got opinions at Swedish Cancer Institute on First Hill as well as Seattle Cancer Care Alliance, and both teams recommended neoadjuvant chemotherapy followed by liver resection and more chemotherapy after. Since Swedish had earlier availability for my treatment, I opted to start treatment with them at that time.

My first CT scan after starting chemotherapy showed very good response to Folfox+Avastin, and after 8 cycles I was scheduled for a combined colon and liver resection which took place On March 25th, 2015. I had very quick recovery and was able to resume chemo within 3 weeks completing all 12 cycles of Folfox.

I had my post-treatment CT scan 1 month after completing chemotherapy and was told that I had no evidence of disease and I was to be scanned again in 3 months with no additional treatment. However, after reviewing my radiology report myself I noticed that it made reference to increased lung nodules. I went back and reviewed previous reports and noticed that my pre-existing lung nodules had grown slightly while I was off chemo for my liver/colon surgery. Having read a lot about my cancer since my diagnosis, I became very alarmed and asked my oncologist for reevaluation and referral to a thoracic surgeon. I met with the thoracic surgeon 2 weeks later, but he opted to wait for my next scheduled CT scan at 3 months to determine whether a surgery might be needed. Both my oncologist and the surgeon were of the opinion that the chances of these nodules being cancerous was fairly low in my case. I spent the 3 months worrying and doing everything possible I thought I could do to help keep my cancer under control, which included eating better, multiple supplements, and daily hiking. I also continued reading and educating myself on everything related to colon cancer.

Unfortunately, my October 2015 scan confirmed my suspicion, and noted that 2 lung nodules in my right lung had almost doubled. I was quickly scheduled for a surgery, which took place right before Thanksgiving 2015. During the surgery, another tiny nodule was found and all 3 were confirmed to be cancerous. According to my surgeon, that was bad news of recurring disease. On a positive side, my lymph node biopsy around the lungs was negative.

After another 6 weeks after the surgery, I had another CT scan. It listed another 5 nodules – in both lungs – and made reference that they have increased from the previous scan in October. What this meant is that the 5 nodules had been there in October, but were missed by the radiologist at that time. It also listed a new larger nodular opacity right at the resection site, concerning for local recurrence. I felt devastated. It was my oncologist’s opinion, after meeting with my thoracic surgeon and the tumor board at Swedish, that my disease was recurrent and systematic and I needed to be placed on chemo for life. They would no longer offer me a surgery.

I was not satisfied with my prognosis and treatment plan at Swedish and again sought a second opinion at SCCA. Dr. Andrew Coveler was recommended to me as someone who would be a good fit for my own personality and tendency to ask a lot of treatment questions, so I requested an appointment with him. After reviewing my scans and records, Dr. Coveler was not convinced my disease was systematic, because the majority of the nodules had been there and I had no other disease recurring elsewhere, coupled with the fact that my CEA had been in normal range (1.7- 2.2) ever since my liver was resected. However, to be sure, he wanted me to have another scan in 8 weeks to determine if new disease would pop up. If not, he would refer me to Dr. Douglas Wood for thoracic surgery on each lung.  Again, while waiting, I focused on eating better, daily hiking and supplements to try to help keep my cancer under control.

The next scan in March 2016 showed slight increase in some of the existing nodules but no new disease, clearing me for referral to Dr. Wood. Dr. Wood recommended an open thoracic surgery of my left lung first, and surveillance and reevaluation of my right lung to determine if another surgery there would be feasible as well.

I had my left lung resected at University of Washington on April 25th. 3 out of 4 nodules removed were cancerous. My follow-up CT showed new suspect nodules in the lung that was just operated on, and my right lung surgery has been put on hold pending verification that those are cancer. Unfortunately the nodules were too small to call either way on the CT scan. My next CT will be in Mid-September and I remain off treatment till then. Again, I am spending this time doing what I can researching my disease, eating better and hiking daily. I am also looking into back up options such as the laser lung surgery available in Germany and the UK which allows for the removal of multiple lung metastases.

About me

I am a 41-year old Creative Director, Graphic Designer, photographer and fine artist. I have been married to my spouse Daryl for 15 years and together we have two children – Jasmine, 13 and Jeremy, 8. I have lived in the Seattle area for 11 years, after having spent years on the East Coast and in the Midwest. I am originally from Sofia, Bulgaria.

After my cancer diagnosis, I rekindled my passion for fine art and started actively painting again, something I had put to the side while being busy with my Creative Direction career. I have recently started showing my art and participate in the Kirkland Art Walk. It is my goal to have an art exhibition benefiting local colon cancer patients through a foundation I have started to work with closely – Washington Colon Cancer Stars. My artwork Big Blue Hope was also recently selected for the 2017 Expressions of Hope Calendar.

Almost 2 years into my diagnosis, I still work full time and have not stopped doing anything I used to do before diagnosis – to the contrary – I make a conscious effort to enjoy every moment and get the most out of each and every day. One goal I have is to walk or hike outdoors every single day. I do so after work in one of the many Seattle parks or beaches, and in the Cascade Mountains over the weekend.

I also became passionate about helping other colon cancer patients anywhere in the world through online support groups. After participating in a number of existing groups, in late 2015, I started a Stage 4 colon cancer support group on Facebook, which in less than 6 months has more than 450 members. I try to use my recently acquired knowledge of the disease to help others ask the right questions and navigate their own treatment options with more ease. I clearly remember how scared and isolated I felt when I was initially diagnosed, and our group is there to give people an immediate access to first-hand experience and many success stories of others who also face a Stage 4 colon cancer.

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