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An Unusual Case of Small Cell Esophageal Cancer

An Unusual Case of Small Cell Esophageal Cancer

Posted by brave222 on Nov 7, 2018 10:59 pm

   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 three weeks she is just beginning her second round of chemo.
   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.

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by Brighty on Nov 8, 2018 7:16 am

brave222‍    welcome to cancer connection! ! I don't know how I missed this post yesterday.     I'm sorry about your mom's diagnoses.      My fiance had esophgeal cancer.    It had spread to the lymph node.     One surgeon  said surgery was out of the question  and it was impossible  to do.  We found a new surgeon  who was able to do the surgery and miraculously take out the infected  lymph  nodes.    I wwould strongly advise getting  a second  opinion.     What province  are you in?   I know its not exactly  the same situation  as your mom but there just might be a skilled surgeon out there who is able to do this kind of surgery .     I hope to hear from you.     

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by brave222 on Nov 8, 2018 10:25 am

Hello Brighty, 
Thank-you so much for responding. My mom and I are inspired by you and your fiance's story, and are happy to hear that the surgery was successful. In my mom's case, her tumour is too close to her voice box/vocal chords, so surgery would be risky, and quality of life afterwards would be difficult. Also, because it is small cell they are telling us chemotherapy and radiation are the best course of action at least to begin with because of its ability to metastasize. We are from Ontario, and are definitely in the process of getting more opinions. Did your fiance do anything outside the surgery to go along with the treatments? (naturopathic, etc) 

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by Brighty on Nov 8, 2018 11:06 am

brave222‍  my fiance did the 5 weeks radiation  and chemo combo.. then surgery.    The surgery also damaged the vocal cords.    BUT there procedures that can be done that fix the vocal cords.   I'm in Ontario  too.   My story did not have a happy ending but that was not because of the surgery.. the surgery  was a huge success.     There were other factors  involved in our story that I can tell u about another time.. .. but as far as the surgery goes if you find a skillful surgeon there are many success stories  with this.   

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by Brighty on Nov 8, 2018 11:11 am

brave222‍ as far as neuropathy goes.. as far as I know there isn't any proven scientific evidence that that type of treatment works.     My fiance  had to do the chemo and rads combo first in order to shrink the tumour and prevent further  spreading.     Then several months layer surgery followed.   During this long gap he was required  to gain weight in order to be strong enough for surgery and also needed time for the chemo to be completely  out of his system 

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by princessmaura on Nov 8, 2018 1:01 pm

when I had my major cancer surgery I was skin and bones but the surgery had to be done...it must have been an emergency because the surgery date kept moving closer and closer...until it was only 6 days left to wait from the initial assessment appointment...

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by nancy180 on Nov 8, 2018 3:19 pm

Hi Brave222, 
I am truly sorry about your mom’s diagnosis. I had my entire esphogus remove on July 2nd, 2015. That was after brachytherapy , radiation and Chemo. 
Long way back but I still walk the dogs, mow the lawn etc. 
Now this is only my personal opinion but I would sacrifice my larynx if it would save my life. My treatment in Hamilton and later Kingston has been outstanding . The day to day details for the first year after surgery are somewhat gruelling. But, I got better fast considering. So feel free to
have your mom contact me any time. The struggle looked hopeless, even the doctors were doubtful , but here I am. Nobody knows I was sick if I don’t tell them! 
All the very best, Nancy

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by brave222 on Nov 8, 2018 4:37 pm

Brighty‍, I am sorry to hear about your fiance. We are hoping that the chemo/radiation will shrink the tumour and stop the spreading even in hopes that surgery may become an option down the road. We will seek out further options once her initial treatment is done. We have been reading many success stories and are hopeful... For now getting second opinions is important as well. Like you said, a skillfull surgeon may be able to take it on.

nancy180‍ I completely agree about sacraficing the larynx, and while scary my mom would like to take that chance if the possibility came up. Her doctor said that no surgeon would do it in her case, but hopefully her tumour shrinks and something changes so that somebody will be able to. It will obviously be worth it. Thanks so much for replying and sharing your story. Happy to hear you are doing well. 

princessmaura‍ Hope all is well. Thank you for replying... we are hoping that my mother may be given a surgical option if necessary. 

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by princessmaura on Nov 8, 2018 5:45 pm

brave222‍, you are welcome...my life after cancer treatment is a challenge but I keep trying to cope...

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by Brighty on Nov 8, 2018 5:58 pm

brave222‍  yes, once the tumour is shrunk, I hope surgery will become an option for your mom.    As for the voice box, like I said, there are procedures that can be done to fix it.    My fiancé was scheduled to have one of those procedures done, so it is possible.          I hope your mom's treatment proves to be a success!  As the best and keep her weight and strength up in the meantime!       

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by ConnieLee on Mar 2, 2019 8:14 pm

Omg..same but small cELL lung..that 1  of the under lying cause of low sodium as I found out hard way too. Was awful. 
very aggressive cancer but it responds very well to chemo. 
I wish your mom the best. 
 

Re: An Unusual Case of Small Cell Esophageal Cancer

Posted by ConnieLee on Mar 2, 2019 8:15 pm

Remember. .small cELL and non small cELL quite different..most are umoperable..the 1st operated on are usually mistakes..