Friday, May 20, 2016

My husband has esophageal cancer

April 1st my husband passed out at 5 AM on our bedroom floor. The night before we had walked five miles for our dinner date. He had felt nauseated and didn't eat. I called EMS and all of us thought he had a heart attack. Off the the ED he went. April 2nd we were told he had an esophageal bleed and possibly esophageal cancer.  We began his daily intake of freeze dried strawberries from research sent to us my Dr. Gregor. He has also started turmeric and ginger as well as apricot seeds.
The first biopsy was long high grade dysplasia with  Barrett's with a high amount of inflammation. The second, three weeks later, confirmed T1b esophageal cancer. Next was the CT scan, which had a upper left lobe lung spot in addition to the esophagus, and an endoscopic ultrasound to measure the depth of the tumor. Then the PET, the esophageal area as well as the lung lit up. In the mean time we had met with my GI for suggestions. He suggested Dr. Nick Shaheen for a resectioning of the tumor area and then cyrotherapy treatment for the Barrett's.
We have met with two oncologists, needing a second opinion. Both recommended an esophagectomy and a lung biopsy with a possibly remove of the upper left lobe if it isn't a metastasis. Neither thought that was likely but they wouldn't rule it out. The lung spot is shaped similar to a sweet gum ball (cancer like shape) but hollow.  The second opinion thought has less than a 45% change of being cancer.
We have also met with Shaheen. He is willing to do the resectioning and it is scheduled, but if it were him , Shaheen, he would go the route of the esophagectomy.

This is from my husband:
Dr. Shaheen explained that the cancer in the esophagus is at least slightly in the second layer. That means a 5 - 21% probability that it has spread to the lymph nodes. It could be in layer 3, which would mean a 22 - 54% probability. If they take out JUST the cancer and it IS in the lymph nodes, then it will eventually spread and show up somewhere else and I'll be on chemo or radiation or something to address that.

Meanwhile, every two months or so, he will go back in using same-day endoscopy to "clean up" the Barrett's esophagus and high-grade dysplasia that is a precursor for esophageal cancer. Then checkups every couple months to see if anything resurfaces.

We are putting the lung spot on hold. If it is cancer, it should be larger when we do the next scans two or three months after the resection of the esophagus. If so, we'll have it removed, biopsied and remove a lobe of the lung if it checks out positive for cancer. Then they can do extensive forensics on it and prove conclusively whether it came from the esophagus.

If it is positive AND came from the esophagus, I'll go on chemo and radiation therapy for metastasized cancer but I'll still have my esophagus. (And might already be on chemo and radiation from paragraph (1) above.)

There is still a point where the esophagus could go: If the resection cannot be done once they get in there because the tumor is deeper than the biopsy or pathology reports indicate they would take what they can and probably recommend strongly that the esophagus be removed.

Interestingly, the doctor today indicated that because of my excellent overall health and vitality, an esophagectomy would only have me laid up for two weeks (vs. the 6 to 8 weeks the other doctors quoted me).

So, again, I'm taking a small risk that could put me on chemo and radiation that I may avoid with the immediate esophagectomy. But for some reason I feel better about weathering that storm than the surgery.

You want to have a frustrating time, try figuring out how long you are going to live under various scenarios, including healthy ones! The average life expectancy of a 60-year-old male is 83. The average life expectancy of a 42-year-old male is 78. The fact that you made it to 60 actually increases your chances of living longer.

Now, if you have esophageal cancer of the mildest type (which I have) only 40% live five years. But who are those people who die before then? Do they die of the cancer or the treatment or an unrelated heart attack? How old are they? Are they otherwise healthy? And the biggest question: How long does someone live if they are otherwise healthy, 60 years old but feel like 45, have been drug and medicine free their whole lives, never smoked, drink in moderation, have exceptionally low blood pressure, no heart issues, etc, etc, etc?

No real answers. It is basically a crap shoot, right? So does it really matter if I have a 22% chance of metastasizing if my overall chances of living five years are 40%?

2 comments:

  1. I am so sorry to hear this. Please tell us your hubby is doing ok.

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  2. He is doing better, He had a lobectomy (stage 1) June 30th and an esophagectomy (stage 2) August 12th. He is working half days and hoping to be back to work full time the first week in October. I wish he ate like our son and I do instead of the SAD.

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