38 and diagnosed with stage 4 esophageal cancer
I am a 38 year old male from Minnesota. Non smoker my entire life and pretty much a social drinker until recently. Since essentially Christmas of 2016, all I can say is I have just felt "off". Not really depressed, just unmotivated, undriven, and lethargic. It has happened a few times in the past 2 years that I woke up choking on stomach acid. 5 months ago I began to have some pretty noticeable pain swallowing food.
In June, I went to the doctor because I was beginning to have severe acid reflux in addition to the swallowing problem. (Usually the 1st 3 to 4 bites of every meal need to be taken gingerly and slowly, and red meats and bread or a combination of those cause the most problems.) I told the doctor my symptoms in detail, The doctor barely looked at me, told me I had heartburn and threw a prescription for prilosic at me. The heartburn itself went away quickly, but the swallowing problem did not. and I have since switched to Zantac due to the long term side effects of PPIs)
Knowing the doctor was an idiot, I set up an appointment with a GI specialist at the Mayo clinic in Rochester in August. I detailed all my symptoms, and immediately they began with bloodwork, scans, biopsies, endoscopic ultrasounds...On day 1 I asked the original doc could this be esophageal cancer? "Highly unlikely, infinticimile numbers of people get it at your age. Usually people in their 50s, 60s, 70s who drink and/or smoke their whole lives develop it."
1 day later I find out that I have two abnormal tissue growths in my esophagus, 1 literally a mere inch or so above my stomach sphincter causing my esophagus to be 70% constricted. The other one in the mid of my esophagus, with a tiny amount of tissue connecting the two. Next day, suprise surprise, I find out that it is in fact adenocarcinoma. Next day, I found out it is in my lymph nodes, as far as my shoulders and abdomen, officially making it an early stage 4.
The good things I have going for me are that
1. My appetite is still normal as I write this.
2. Although I don't feel 100%, I have a decent amount of energy, and am able to exercise, even vigorously, if I give myself enough recovery time.
3. It has still not spread to any major organs, I do have a tiny spot on my liver, so small that a biopsy or MRI would be pointless...they think that if it is cancerous, chemo would kill it very quickly.
4. I have a touch of youth left, and my blood work is as close to normal as a 38 year old moderate obese guy can be. No high blood pressure, no diabetes, no severe anemia, vitamin and mineral counts are very close to normal.
At this point I am doing a chemo coctail every two weeks with an experimental immune system booster. I just started round 2 today, and have a take home pump hooked to me until Friday. The goal is to shrink the 2 tumors enough and knock the cancer out of the lymph nodes to where we can at least do radiation.
At this point, I am not even a candidate for surgery, though they haven't completely ruled it out. It is just too thick and too close to too many vital organs.
The surgery they want to do is to cut the top part of the stomach and bottom part of the esophagus out, match it up as best they can. Has anyone ever done this, survived, and had any quality of life or lived close to a normal life after it? They flat out told me even without complications, the first year after that surgery can be hell.
Looking back, I would guess that I have had this cancer at least 2 years, if not longer. There were just too many little hints of things being wrong that I wrote off as just "getting older"
1. Occasional metallic smelling stools for the last 2.5 years.
2. I became a very slow eater without realizing it, and subconsciously I would eat slower and smaller portions.
3. Acid reflux problems that slowly got worse over two years but suddenly became severe earlier this summer.
4. Mild lethargy and a lack of motivation for well over 2 years.
5. Pain in mid to low esophagus after swallowing food that gradually got worse and worse.
6. Dull, throbbing pain directly around and below the sternum. Sometimes it felt like light burning or poking (very different from heartburn, I tried to explain this to the first doctor).
7. Sometimes with along with severe heartburn, pain and itching would radiate to the mid to upper back.
8. About 8 or so episodes in the past 2 years where I woke up choking on stomach acid. Anyone who has experienced this knows it can be 2 to 3 times more painful that simply vomiting. I sleep with my bed inclined now.
9. I get the hiccups now if I eat too fast, probably due to the bigger tumor pushing the esophagus in odd directions.
While I don't feel 100% like I mentioned, I surely do not feel ready to drop dead anytime real soon. The first chemo kicked my **** for about a day, but I was recovering from a cold to begin with. With #2 I am not feeling the greatest right now but I kind of know what to expect.
I know doctors love to throw numbers and stats at everyone and lump people into groups, but I am optimistic that I can fight and beat this. They wouldn't bother treating it if they didn't feel I at least had a fighting chance. The continuous pain around my sternum has all but disappeared, I managed to eat a steak tonight with very little complications. People who look at me do not even believe that I have cancer, I just don't look sick.
I think it is all about your own attitude, even your own spirituality. And the people who support you. Good luck and my thoughts and prayers are with anyone going through this or any type of cancer right now. I am curious to hear everyone's story and experiences.
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