What a nightmare

Denise54
Denise54 Member Posts: 20
in Esophageal Cancer #1
My name is Denise, and my dad who just made 65 last month was recently diagnosed with esophageal cancer towards the lower part, near the stomach area. Symptoms started in the first week of May with "acid reflux" like symptoms, including throwing up. His MD gave him an RX for Nexium AND Pepto Bismol, told him to give the meds 2 weeks to take effect, if it doesn't get better, to call. I was already suspicious and upset because he was still throwing up even AFTER the Nexium was being taken. I called the office, they told me to have him come in so that an x-ray could be taken, they thought it was a blockage to his small intestine, told him that he needs to do another test which he needed to do the barium drink. After that, the "blockage" looked suspicious which furthered more tests, that resulted as esophageal cancer. My dad would go the doctor twice a month EVERY month, had numerous x-rays, blood work and was on it with his health. I just don't understand how this could happen. THE DOCTOR'S NEVER STAGED HIM, had a team of oncologists and surgeons who worked on a treatment plan with him as well as my mom. Till this day, no stage was given, although I did happen to see a report for his insurance company that said it was T4N3 (Stage III), there was NO "M". At the time when they disclosed that it was indeed cancer, they took a PET scan and found that IT WAS CONTAINED, it didn't spread to any other organs. I'm scared, confused and unsure what to do from here. As of right now, my dad is on day 22 of chemo (has a port surgically implanted) as well as a G tube placed from late May. One good thing is that he is able to eat NOT fully solid foods, i.e. watermelon, fresh peaches, sweet potatoes, AND is able to keep it down. I told my mom we should maybe get a second opinion from someone who specializes in this type of cancer. This feels like it's a terrible nightmare that we need to hurry and wake up from. Unfortunately, it's a reality that's difficult for me to grasp, Lord knows how my dad and mom are feeling. My dad is currently on Jevity 1.5, we're also giving him Kefir probiotics, Beta Glucan and Maitake D through his G tube. Not too sure when another scan will be taken to see if the tumor shrank. I hope it didn't spread in the meantime.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • oriontj
    oriontj Member Posts: 375
    #3
    unknown said:

    This comment has been removed by the Moderator

    Don't forget gall bladder problems
    That's what they told Tom. Our GP fooled around etc. Then we went for the endoscope and found out what it was. But then who even knew about ec? We didn't.

    jan
  • Denise54
    Denise54 Member Posts: 20
    #4
    oriontj said:

    Don't forget gall bladder problems
    That's what they told Tom. Our GP fooled around etc. Then we went for the endoscope and found out what it was. But then who even knew about ec? We didn't.

    jan

    Always on it with Dr's. appts.
    My dad would always go for colonoscopies because colon cancer did run in our family, results would always be normal. No one ever told him that due to his history of acid reflux, it would be good to do an endoscopy as well. We NEVER heard of EC until now. I thought if there were any abnormalities, it would show up in blood tests. Boy, was I wrong, blood tests were normal.
    THIS is happening to us, we'll do whatever we have to to fight this. I'm so glad that this forum exists, to know that there are other people that are going through this, that we are NOT alone.


    Denise
  • BMGky
    BMGky Member Posts: 621
    #5
    Denise54 said:

    Always on it with Dr's. appts.
    My dad would always go for colonoscopies because colon cancer did run in our family, results would always be normal. No one ever told him that due to his history of acid reflux, it would be good to do an endoscopy as well. We NEVER heard of EC until now. I thought if there were any abnormalities, it would show up in blood tests. Boy, was I wrong, blood tests were normal.
    THIS is happening to us, we'll do whatever we have to to fight this. I'm so glad that this forum exists, to know that there are other people that are going through this, that we are NOT alone.


    Denise

    So sorry your family is having to deal with this.
    The diagnosis is such a shock!!!! Who has ever heard of esophageal cancer? The devastation is unbelievable!! I read that William is personally helping you. He and Loretta are a superior source of information and help so many on this site. Even though you are contacting them personally, please continue to post on this discussion board as we all are interested in being of help, of support, and frankly, want to know what is going on. No question is too simple or too obvious. This is new territory for you and many others. Prayers for successful treatment. (I'm a caregiver. My husband had his surgery in May, 2010. His subsequent scans show no evidence of disease. We continue to be hopeful.
  • Gatoraid
    Gatoraid Member Posts: 66
    #6
    Sorry to hear your news.
    Your fathers diagnosis is very similar to my own; a tumor where the esophagus meets the stomach. For me, the cancer was confined to the tumor and 2 close by lymph nodes. I was given a guess on the staging, but the final true staging was known after surgery. I had 2 rounds of chemo (Cisplatin and 5-FU) simaltaneous with 28 days of radiation. After 6 weeks for recovery, I had MIE surgery where they removed 2/3rds of my esophagus and 1/3rd of my stomach. I had a port implanted as well and I am so glad that I did because it is much better than getting needles every week for tests and hydration. It is extremely important to be well informed and the Oncologist should be giving you all the information on your fathers case. It's also very important that the Oncologist and Surgeon have substantial experience with this specific type of cancer, treatments and surgery. If you're not satisfied this experience will be much worse than it has to be. Don't be afraid to get a second opinion or change doctors. I wish you and your family good fortune going forward.
  • linda1120
    linda1120 Member Posts: 389
    #7
    We are all here for you
    Hi Denise,

    My husband had stage III EC and due to this site we sought a second opinion and went to
    a cancer hospital that had excellent experience with the MIE. Jim had four lymph nodes
    light up in his Petscan, one a distant node. He had surgery and all of his pathology came
    back negative! His 3 month and 6 month scans have been clear. He had the same kind of
    treatment that your dad is having and it worked extremely well. Jim is 69 years old.

    This support system is invaluable and helped me so much as Jim's caretaker over the last
    ten months. We are here whenever you need us.

    Linda
  • Denise54
    Denise54 Member Posts: 20
    #8
    BMGky said:

    So sorry your family is having to deal with this.
    The diagnosis is such a shock!!!! Who has ever heard of esophageal cancer? The devastation is unbelievable!! I read that William is personally helping you. He and Loretta are a superior source of information and help so many on this site. Even though you are contacting them personally, please continue to post on this discussion board as we all are interested in being of help, of support, and frankly, want to know what is going on. No question is too simple or too obvious. This is new territory for you and many others. Prayers for successful treatment. (I'm a caregiver. My husband had his surgery in May, 2010. His subsequent scans show no evidence of disease. We continue to be hopeful.

    HAPPY TO HEAR
    Thank you for your message!! Just knowing there are wonderful people here that support and care so deeply, welcoming our family into this ONE BIG family is awesome!! I will most definitely keep up with the posts. I'm so happy to hear that there is NO evidence of cancer for your husband, let's keep it that way. I will be hopeful as well.
  • Denise54
    Denise54 Member Posts: 20
    #9
    linda1120 said:

    We are all here for you
    Hi Denise,

    My husband had stage III EC and due to this site we sought a second opinion and went to
    a cancer hospital that had excellent experience with the MIE. Jim had four lymph nodes
    light up in his Petscan, one a distant node. He had surgery and all of his pathology came
    back negative! His 3 month and 6 month scans have been clear. He had the same kind of
    treatment that your dad is having and it worked extremely well. Jim is 69 years old.

    This support system is invaluable and helped me so much as Jim's caretaker over the last
    ten months. We are here whenever you need us.

    Linda

    Blessed
    Hello Linda,
    That is so awesome to hear. I FEEL SO BLESSED to correspond with all of you. I feel like there is hope, in reading all of these success stories. That day will come when I'll post about my dad and how he survived this as well. Thank you for such great support!!
  • Denise54
    Denise54 Member Posts: 20
    #10
    Gatoraid said:

    Sorry to hear your news.
    Your fathers diagnosis is very similar to my own; a tumor where the esophagus meets the stomach. For me, the cancer was confined to the tumor and 2 close by lymph nodes. I was given a guess on the staging, but the final true staging was known after surgery. I had 2 rounds of chemo (Cisplatin and 5-FU) simaltaneous with 28 days of radiation. After 6 weeks for recovery, I had MIE surgery where they removed 2/3rds of my esophagus and 1/3rd of my stomach. I had a port implanted as well and I am so glad that I did because it is much better than getting needles every week for tests and hydration. It is extremely important to be well informed and the Oncologist should be giving you all the information on your fathers case. It's also very important that the Oncologist and Surgeon have substantial experience with this specific type of cancer, treatments and surgery. If you're not satisfied this experience will be much worse than it has to be. Don't be afraid to get a second opinion or change doctors. I wish you and your family good fortune going forward.

    Thank You!!
    Thank you for your post, I'm glad to hear that you are doing well. My mom will be calling another doctor for a second opinion hopefully tomorrow. I would most definitely want my dad to see not only an experienced doctor, but one that he's comfortable with as well. Thank you for telling me about your experience and what you had to go through. I wish you and your family the same blessing, please keep in touch.

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