Mom is trying to protect me from her new diagnosis. Need answers!

PriscillaH
PriscillaH Member Posts: 2
in Esophageal Cancer #1

For months mom said she could barely swallow anything she ate. Then a sore throat and lump developed. She saw a doctor who put her on antibiotics for infection. When that failed to help she began seeking a doctor who could fit her in as a new patient with no insurance and wanting to pay cash. After six weeks her first appointment and test she was told nothing and sent to another doctor, who sent her to the hospital to attempt a scope for a feeding tube. The hospital was unable to get the scope down her throat. She was told to go to another hospital in a larger city to be admitted. She is trying to protect me by not worring me but its only making it worse. I feel like I can not prepare myself or process her pain because I'm in the dark. So what I do know is, three days ago she was admitted and sent again for feeding tube but because she is still uninsured her feeding tube surgery was cancelled. She is receiving iv. She has been told chemo and radiation would happen, not surgery. A PET scan came back 9-11, but don't know what max number is or what this means at all. Dad said today her biopsy came back negative so they want to do another one to see if its on the outside of esophagus. Is this common? She can no long eat solid food at all but says she otherwise feels fine. She has lost over thirty pounds and after first attempt at the scope for feeding tube she was chocking on her own saliva. I know she is bad but don't know what stage or where it may have spread. Can anyone tell me what she won't say. She is 59 and I'm an only child with no other family other than my dad who is 70 and not in good health. Oh, dad also said she had a hernia, if that matters. I work two jobs, seven days a week and they have moved her an hour away from my home. But if her condition is as bad as it seems, I need to know now. Thanks for any help

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
    Priscilla~Mom should NOT be keeping her illness a secret!

     

    Oh dear me Priscilla!

              Where to begin?  You haven’t given us any definite word as to where to begin.  However, difficulty in swallowing and weight loss are definitely two “tell-tale” signs of a possible diagnosis of Esophageal Cancer.  What made you choose this link?  Did you see the words Esophageal Cancer written somewhere in connection with your Mother.  No matter, I can “feel” the anxiety and perplexity in your words.  Understand that all I say will be in the way of guidance so you can find some answers.  I cannot prescribe anything or give a diagnosis, but I am THOROUGHLY familiar with Esophageal Cancer.  In that regard I understand your need to know and identify with your heartache as well.

              So let’s get this straight.  Mom has no insurance.  She was sent to at least 3 different doctors and then to a hospital who was trying to scope her for a feeding tube???  That was unsuccessful, so she was sent to another hospital but the feeding tube insertion was cancelled because she didn’t have insurance.  You say she is “getting IV”.  Does that mean she is still in the hospital and being given hydration?  I don’t understand.   

             You write—“She has been told chemo and radiation would happen, not surgery. A PET scan came back 9-11, but don't know what max number is or what this means at all.”  Now Priscilla, what did you mean by “iv”?  There is a Stage IV Esophageal Cancer diagnosis.  If your mother was given that number as a diagnosis, then surgery would not be possible, but palliative measures like chemo and radiation would be prescribed.

             However, with no more testing than she has had to date, it doesn’t seem possible that any doctor or hospital could have reached a diagnosis of Esophageal Cancer Stage IV.  I will put a link below my name that will describe the type of testing that must take place prior to having such a diagnosis.

             You say, your dad is not in good health and you are an only child.  Dad says she also has a hernia.

     Does he know something you don’t know?

     Who is accompanying her to the doctors?

    What kind of a feeding tube are the doctors trying to put in?

             Could they possibly be trying to insert a stent to facilitate swallowing?  If so, this is very different from a feeding tube.  Moreover, a feeding tube that works best is called a “J” tube and is inserted in the second section of the small intestine, the Jejunum.  Furthermore, this will require someone helping her administer the formula that goes into a “J” tube.  It does require a surgical procedure in the operating room.  Often Stage IV Esophageal Cancer patients are given a “J” tube.  If the doctors were trying to put in a stent into the Esophagus, many of the people that have had stents put in the Esophagus found them not to be the most helpful.  Sometimes it created more problems.  I am just giving you observations from my experiential point of view.  My husband is now in remission.  He was diagnosed in 2002, EC Stage III (3N1M0) (Adenocarcinoma at the GastroEsophageal Junction).  He had pre-op chemo of 5-FU and Carboplatin plus 25 sessions of radiation.  Thank God he is now entering his 14th year of remission.  However, we don’t use the word “cured” because recurrence is always a possibility.

            Lastly, if you want to send me a private message and give me your phone number, if at any time you can learn more, I would be able to help you more.  Meanwhile, you have my deepest sympathy.  You certainly have every right to be worried, and you should not be left out of the loop.  I am truly so very sorry to read your letter.  See what more you can find out.  Do you have the name of a doctor that has seen your mother?  Do you have the “permission” to discuss her medical condition with any of the doctors? You know how particular we are about “privacy” these days! You’re going to have to be “more forceful” with your Mom and Dad.  They should not be keeping anything from you.  No one has the diagnosis of Esophageal Cancer and can handle it all by themselves without it affecting the other family members.

    Love & prayers,

    Loretta Marshall

    (Wife of Husband w/EC Stage III (3N1M0) who had Minimally Invasive Esophagectomy at the University of Pittsburgh Medical Center by Dr. James D. Luketich May 17, 2003.  He is now in 14th yr. of remission thank God!)

     

              You can start here to know more about the symptoms and treatment when a diagnosis of Esophageal Cancer (any stage) has been given.  Note the topics listed on the right side of this web link.   You will know all the facts about Esophageal Cancer that you need to be well informed.  However, after you inform yourself, you need to INSIST that you are informed by your parents about what is going on.  After all, “You’re no longer their “little girl” Priscilla.”  You’re a grown woman that dearly loves your parents and should NOT be excluded at this time.  It is obvious you are their “support system!”  And I haven’t even touched “not having insurance”.  Isn’t this what the “ObamaCare” (Affordable Health Care Program) is supposed to be about?  You might contact your Congressman or woman, explain the plight of your mother, and ask for specific help.

     

     

     

     

     

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Your mother

    I am sorry to hear about your mother.  Due to laws the hospital and doctors can't tell you about your mother's condition unless she allows them to.  And apparently she doesn't want you to worry or know much about her condition.  One of my sons is keeping his condition until he is sure from his grown children and I can't say anything to them either because he asked me not to.  He has already had a kidney removed due to cancer.  My husband was first diagnosed with laryngeal cancer and after radiation and chemo was not able to swallow at all.  A feeding tube was inserted before treatment started.  Then he had to have surgery and they found out that his throat was damaged by the radiation and they had to reconstruct his throat.  He had lots of thick mucus but it never prevented his doctors from doing endoscopes on him after his surgery.  If the doctors were not able to insert a feeding tube then there is a blockage in your mother's esophagus or her esophagus is very narrow and won't allow it.  The mucus wouldn't prevent it from happening.  My husband's second primary was the cervical of his esophagus, rare for cancer and hard to treat.  More radiation and chemo but it returned and spread to his lungs and he passed away in late July of this year after under going more radiation and chemo. 

      

  • SharonMI
    SharonMI Member Posts: 8
    #4
    Hi Priscilla. My huusband was

    Hi Priscilla. My huusband was a stage 4 esphageal cancer 10 year survivor. Our kids were in high school, loved to not have to tell them. We learned if you are secretive there causes more worry becaise you know somethings going on, but you what?? So we were upfront with all of their Dads news. my husband did radiation and chemo first. His surgeon blantenly told us we probably wouldn't see him again since Galen's cancer was so advanced. Well with tons of prayers and loving family to keep up his spirits, Dr Orringer at U of M did the surgery. The doctor could not believe what he saw when he went in. He said he sees miracles every once in awhile, but the Doc could not find one spot of cancer and his lymph nodes that were invovled were all clear too. Galen lost 40 pounds during his treatment and suscessfully gained 30 pounds bach, which also the doc was amazed. There so many good survivor stories out there, so concentrate on those.

    Hugs, Sharon

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