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I hate this cancer

Steph85's picture
Steph85
Posts: 154
Joined: Feb 2018

Hello there. I am usually on the kidney cancer discussion board since having a tumor removed back in January. Cancer has effected my life so much. My Mom passed away from small cell esophageal cancer. She had acid reflux and swollowing problems for awhile and it took awhile for the doctor to take her seriously and do and endoscopy. Once diagnosed in Early December 2008 she started chemo, then had the surgery in January 2009. Her body was so week from the chemo she just was too weak to fully heal I guess. She was in CCU for a month on life supprt until we had to let her go. She just kept getting infection after infection. Turns out from the time of the diagnosis to surgery the cancer had aleardy spread. I am soo lucky my tumor was found incidentally. I went in to ER with abdominal pain and black stools and the Doctor said it was a stomach ulcer sice I had been taking NSAIDS to help with my tension headaches everyday. My sons pediatrician told me to get a second opinion since it could be gallstones and I had an upper GI series and abdominal US and upper GI came back NED. No gallstones but I had a 3cm mass on my right kidney. That pain saved my life! Usually when symptoms start to show it has already spread. I am a Mom of 2 young boys and I would hate to have to put them through what I went through.. I've been thinking about my Mom alot lately. Especially since I have been having horrible heartburn for the last week. My Mom was a "functioning I guess" alcoholic and a smoker. Doesn't make her a bad Mom though! she was amazing. Hurts she never got to meet all her gran kids. My boys would have loved her. Anyway, I no longer drink and quit smoking over 8 years ago. She was 54 when she passed. I am 32 and already a cancer survivor! I have my first CT scan on june 4th. Hoping NED! My monster was stage 1 grade 2. 

I am just sorry for everyone on here that has to go through this. I wish I would have found this forum 9 years ago instead of self medicating with alcohol. Everyone on here are true warriors. Keep staying positive and fight the fight! Here's to future NED!

 

Stephanie

brave222
Posts: 3
Joined: Feb 2019

Hello Stepth85, 

I would first like to say that I am so sorry to hear about your mom. My mother is currently dealing with stage 4 small cell esophogeal cancer, and has been since summer 2018 (I will post her story below), and we continue to hear about how rare it is. She is done her rounds of chemo for now, but now we are looking at next steps, since the cancer is smaller in size, but not completely gone. I am so happy to hear that you are doing well within your own journey, and am thankful that you have shared your story. 

Below is my mother's story. Any advice would be greatly appreciated: 

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.

  

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