NO SURGERY FOR NOW

kcinpdx said:

My surgical oncologist, the most experienced in our region in performing minimally invasive esophagectomies with a robot, recommended the second chemo/radiation therapy as an alternate curative treatment that the results have shown to eradicate esophageal cancer in ~20 percent of people who successfully complete it. The treatment leaves behind scar tissue that heals over. At our appointment last week the surgeon told me he saw one of his female patients last month who had the same cancer as I, underwent the same chemo/radiation as I, did not have surgery and has been completely clear and living a good life for over two years now. He cited other cases where esophageal cancer is cured without surgery. He also said that in some of the MIE's performed after chemo/radiation therapy, the removed esophagus tube and stomach tissue have been found to be completely free of viable cancer by post-op pathology test. I know from reading this forum you are a staunch advocate of surgery as the end all treatment for anyone who has cancer, regardless of staging. While I appreciate your perspective and admire your gracious willingness to help others and provide research information, I keep in perspective that you speak from one patient’s experience from 2003, NOT as a licensed and trained medical professional skilled and experienced in these matters. Much has changed in the last 8 years, and 8 years from now approaches to esophageal cancer treatment will be even different still. In my personal experience during the last year I have worked with nine doctors, specialists in their respective cancer and treatment disciplines, and I obtained second opinions and questioned absolutely EVERYTHING. In addition, I relied on the expert medical opinions of six other radiologists and pathologists who read my films and examined my tissue biopsies, blood work, and organ function tests.

In January 2011, looking like a skeleton at 132 pounds, experiencing horrifying radiation pain and feeling very near death I knew very well my life is at stake. Now three months later I wake up each day pain free, today a vibrant 157 pounds, able to eat everything and run a mile again without stopping. I simply thank god for my surgeon’s recommendation last November to give chemo/radiation a try. Consider why an ethical Surgical Oncologist would be willing to skip a significant payday performing a very expensive robot assisted MIE - does he really want me to die, or does he believe that surgery is unnecessary at this time given that clinical results, pathology tests, and direct examination by a Medical Oncologist, Radiation Oncologist, Gastroenterologist, Radiologist, Pathologist and Internist are in concurrence. I have faith in the opinions and guidance of the team of medical professionals I have worked with and trust they have my best interests at heart.

When I came to this forum I wanted to do what most others who come here do, learn about other people’s experiences, gain insights on self-help from survivors who’ve been there, get and provide all important encouragement, and share the things from my personal experience that proved to positive benefit me and could be helpful to others.

What I didn’t expect was to receive ill-mannered comments. In your message above you criticize my comment about surviving the worst of it. Yes William, try 10 straight months of daily vomiting, endless days of starvation being unable to eat most everything, 40 pounds of weight loss, terrible cancer pain that required daily doses of oxycodone each time before I attempted to eat, days when death seemed the better option, and the worst feeling of all that because of cancer that was trying to kill me, I was failing my wife and children. Now add on top of that a summer long chemo regime that included the debilitating effects of Epirubicin, then a second round with radiation that nearly put me down, and yes, I experienced the worst of it. Did I mention fear, mental anguish and side effects that go along with all of this? I could go on for pages on that but there is no need. Bottom line, I engaged in a horrific fight with cancer not of my choosing and managed to survive what does unfortunately take the life of other people, and I find your disparagement to be incredibly insensitive.

I also found an older message you wrote to me dated March 1, 2011 in which you said: “I can tell you emphatically that the chemo and radiation will not leave your Esophagus in any shape to be rebuilt on its own! It is ‘beyond redemption!’ It is beyond repair at this point, thus the reason for the removal.”

I had 10 endoscopies this last year. On 7 of those, about once a month, the Gastroenterologist literally kept me alive by stretching open the stenosis in my lower esophagus to restore my ability to swallow food and water that helped me keep a little of it down after vomiting. The Gastroenterologist has an entirely different opinion from yours. In late February he wrote my esophagus now looks “absolutely normal” from top to bottom. I find a doctor who explores GI tracts for a living is a credible source of opinion, especially since my esophagus is functioning as designed and has allowed me to gain back 25 pounds without vomiting in almost 3 months. That is a blessing. I no longer consider myself a cancer patient, I consider myself a cancer survivor, and I’m going to enjoy to the utmost however many days I have left and do my very best to be as kind as I can and help other people succeed. And for now that’s all I have to say about that.
Keith