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An Unusual Case of Small Cell Esophageal Cancer

brave222
Posts: 3
Joined: Feb 2019

An Unusual Case of Small Cell Esophageal Cancer

    My mother was feeling unwell, and we were forced to have her admitted to hospital because her sodium level was at 120, while a normal level is between 135 and 145. After a number of tests and days spent monitoring and regulating her sodium levels, she was diagnosed with Syndrome of Inappropriate Antidiuretic Hormone (SIADH), which causes life-threatening, low sodium levels. After spending almost a week in the hospital on a restricted fluid intake, and undergoing many CT scans, she was sent home with urea which is a medicine that is meant to help correct her SIADH condition. This seemed to help for a limited time, but after finishing the dosage she began feeling the same symptoms as before (nausea, weakness, and incoherence).  

  I took her back to Emergency and after bloodwork her sodium level was at 116. During this admission to the hospital they performed a barium swallow x-ray, and the doctors found an abnormality in her esophagus/stomach. After, they proceeded with a scope and biopsy of the affected area. Once receiving many sodium IV drips, my mother’s sodium reached safer levels, and was sent home. Now we just had to wait for the results of the biopsy.

   She was forced only days after to be readmitted to the hospital because the effects of the SIADH. While in hospital, the biopsy results came back showing that she had small cell carcinoma of the esophagus, which is a rare and aggressive disease. Only one other person in our city had dealt with a similar diagnosis. Because of the location of the tumour and type of cancer she was told that surgery would be out of the question. After performing more CT scans, they found several lesions in the right and left lobes of the liver, and the cancer had metastasized to the lymph nodes as well.  

   My mother began her chemotherapy treatment which lasted a total of three days and corrected her SIADH almost immediately. It is of note that the saline drips were struggling to control the SIADH during this last admission. Now, after many months later she has just finished her chemotherapy treatments for the time being, and is going through tests. Her bone scan results were positive, and shows no cancer. A CAT scan shows that the cancer in the esophagus is still present, but smaller. Now she will be meeting with another doctor to decide whether radiation is the next step, or if surgery could ever be a possibility. We are hoping to get second opinions elsewhere as well.

   This is where we are currently in her journey. We want to reach out for the small chance that anyone out there has been diagnosed or knows anyone facing the same type of rare cancer as my mother. Any type of advice, information, or help is greatly appreciated.

  

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello brave222,

I'll start out saying that I have no knowledge or experience with small cell esophageal cancer.  But I am very familiar with being in uncharted waters with esophageal cancer.  I just had surgery a couple of weeks ago that removed a metastatic EC tumor from my lung.  This is now my third go around with EC and my second go around with stage IV EC.  My wife asked the surgeon about a prognosis, and she was told, "I don't want to make predictions about your husband, he's an outlier."  It's difficult to make plans with that as your guide.  We still don't know what my treatment plan is going to be.  Could be any number of things, and I don't know which of them are more or less likely.  We're just going to be in limbo for a few weeks.  It sucks, but I'm alive and doing as well as could be hoped, so we're just going with it.  

I'd like to add a frequent piece of advice I give to folks.  Please make sure your mother is going to a high quality doctor at a high quality hospital.  Half of all doctors and hospitals are below average, your mother deserves to be treated by folks in the other half.  A quality cancer center will have more experience with a rare cancer.  They will also have more resources available.  People die because they don't want to commute/travel to a good hospital.  Because they'd rather have the convenience of going to the hospital down the street.  That's a great plan if you live right down the road from The Mayo Clinic or Johns Hopkins or the like.  This is literally life & death stuff and it's well worth the time & trouble to go to a good hospital.  

Also, a second opinion is generally a good thing.  Worst case scenario, they confirm your original plan, and you wasted a little bit of time, but got increased confidence in your original doctor/hospital.  There's also a good chance that they give you some new ideas to consider.  My second time around, I was given answers I didn't like by a top flight doctor at a top flight hospital.  I went to Hopkins for a second opinion.  They confirmed my doctor's opinion.  She took no offence to my shopping for another plan.  I went into my treatment with full confidence that I was doing the most I possibly could to win.  Your mother deserves that much.

Best Wishes,

Ed

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