I was diagnosed with Stage 4 Esophageal Cancer in June of 2018. It is September of 2019 and I’m still alive. I still have my esophagus, too (more to come on this). I made it through nine months of treatment including 20 rounds of chemotherapy and 28 rounds of radiation therapy and my last two sets of scans and biopsies revealed no visible cancer. My feet and fingers are numb due to chemo induced peripheral neuropathy (CIPN). I still have fatigue and a bit of confusion. Did I mention I am still alive?
If you can see the photo it may seem somewhat simple, right? Oh just take the old esophagus out and yank the stomach up to replace it! A couple staples and some pain pills and you will be back running marathons in no time! (nobody is saying this, I will turn off the sarcasm for a minute)
Esophagectomy surgery basically means I will live with my stomach in my chest, never get to eat a full meal again (multiple snacks throughout the day) and I will often have to sleep sitting up for the rest of my life. Many people who’ve had the surgery swear by it (because doesn’t everyone swear by something they’ve purchased in order to validate the decision?). Also, many people who’ve had the surgery aren’t here to talk about it.
You see, there is very little historical evidence regarding esophagectomy surgery being a guarantee for prolonged life after late stage esophageal cancer treatment. I have done my research in the past year. I joined groups and forums and read through the archives. What I found out is more than half of the people who had the surgery dealt with horrific post surgery issues. Many loved ones left behind state they wish their loved one never had the surgery due to the suffering and quite often, eventual death (days, weeks or months following surgery). I honestly can no longer read the stories because they are depressing. Yes, there are good stories, too. A few of them in comparison. Angie even followed one of the Facebook groups and over time, it got depressing. This isn’t because we aren’t emotionally equipped to handle the good and the bad. It is because over time we realized there are a lot more horror stories than good ones.
What are the Statistics?
I have Stage 4 Esophageal Cancer. This means I fall into the “distant” metastases category and therefore the 5-year relative survival rate that applies to me is 4.8 %. This means I have a 4.8 % chance of being alive in 2023. I don’t believe this or that I am a statistic however it is still a bit daunting. Try telling someone to walk into a fire and they will be an exception regardless of the fact only 4.8 % of people who do this make it out alive. My point is I am all for optimism but let’s cut the bullshit, this is scary stuff.
What if I have Esophagectomy Surgery?
Here is an article that pretty much sums up my feelings on the surgery. I will summarize with a somewhat direct citation from said article.
“Researchers found that median survival rates were significantly higher in the surgical group (32 months) compared with the nonsurgical group (22 months; P < 0.001). ” – source: Healio Gastroenterology
This means patients who chose surgery lived an extra 10 months on average (in this particular study). It is much more complex than this but you get the gist. I could share many more links with granular documentation on similar studies and honestly a lot of it is a wash for me. I am younger than the vast majority of patients in these studies but regardless, the consensus is “if you have esophagectomy surgery there is no guarantee the cancer won’t return and realistically it may only prolong your life a short while”.
I Can Still Swallow
After I finished both radiation and chemotherapy on May 3rd, 2019 I got very sick and came down with pneumonia. I ended up in the hospital for four days. Doctors tried three unique regimens of antibiotics before getting my blood counts stabilized. There were many moments in that four days where I realized this is how it ends for cancer patients. It was as scary as it was revealing. Following that short stay I spent the next few months dealing with the cumulative effects of cancer treatment. By July, I was not doing well. The fatigue kicked in full force, radiation had damaged my right lung and humidity was making it hard to breathe. My feet and fingers were still numb (and still are) and overall I just felt like complete ass for quite a while. Sometime in August I started feeling better. I started exercising again. I am down 30 lbs. since March and I feel so much better. I haven’t had any treatment since May 3rd and I don’t want anymore. I can still swallow food and enjoy meals. I want to get back to work and am working towards that goal every day as energy allows.
Did I mention I can still swallow?
For now, I am not letting them cut out my esophagus. I am focusing on quality of life and getting to my “new normal”. I understand I may never feel like I did before cancer treatment. I accept this. I also understand that having the surgery realistically means my life would be altered significantly for what time I have left and whether or not that is 12 months or 30 years, I don’t want to live my life with my stomach in my chest eating snacks and having every physical activity be restricted, forever.
If you want to know more about esophageal cancer, overall survival and esophagectomy surgery you can use the Google all day long and read a lot of good stories and hell of a lot more terrible stories. I am done reading this stuff. It is time to get my life back and focus on the future. If my cancer comes back, I will do chemo again and beat it again. After all, I am Stage 4 and there is an incredibly high chance the cancer will return. I am granting myself an incredibly high chance of continued survival and I plan to live my life accordingly.