Father diagnosed 1 week ago

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Violet_65
Violet_65 Member Posts: 2
edited March 2014 in Esophageal Cancer #1
And I am his frightened, grief-stricken 45-year-old daughter who lives more than 2,000 miles away. I have some questions and perhaps the more knowledgeable and experienced members can inform me.

My father does not like to talk about his health, so the information I have received from him is somewhat minimal. Here is what I know. He is 75, and until this diagnosis, he was in good health and led a healthy and active lifestyle.

Then, last week I learned that he has an esophageal tumor that has metastasized to his lungs. Also, about two weeks ago, he developed an ear infection that was either caused by, or the pain was made worse by, a swollen lymph node. I've been reading several posts here that discuss lymph nodes. I do not know if this swollen lymph node suggests the cancer has spread to his lymph nodes? Maybe, maybe not?

My father is beginning chemotherapy on January 4. I do not know what type he will receive, nor do I know his schedule yet. I do know that he will receive the chemo intravenously through a port. I hope to learn more about this.

When I asked my father whether his doctor told him the stage of his cancer, he responded, "I don't want to know that stuff. I have no control over it." I got the same response when I asked him his prognosis. I respect his right to handle his disease in his own way. However, not having answers causes my anxiety to skyrocket, so here I am.

I have read enough on my own to know that his prognosis is very poor. I understand from my reading that the chemotherapy will hopefully prolong his life and reduce symptoms, assuming he responds positively. He cannot be cured.

I have read the 5 year survival statistics for this cancer, but what about shorter term survival rates? I guess I want to know what cannot be answered - how much time does he have? Worst case scenario? Best case scenario?

I am going to visit him in a week, and I hope to learn more. However, I do not wish to cause him stress by questioning him too much. If there is anything that I should be aware of, or any information anyone can share, this daughter will be extremely grateful and appreciative. Thank you in advance.

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  • BMGky
    BMGky Member Posts: 621
    #2
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    So sorry to hear of your father's illness
    The grief and fear you feel have been and are being felt by almost everyone who has come to this board for information. I have gained and continue to gain much comfort and information from the fine people on this Board. I hope your Father will let you have more information. When you visit him, you will be able to learn more I am sure. You didn't mention if your father has nearby people to be of support and assistance. While they have many meds to help with the side effects of chemo, oftentimes additional assistance is needed to take care of the patient. I have no idea but he may need even a jtube. Many, many on this site have had to deal with one. I was first very afraid of the tube but it was very simple to operate and was so helpful. I am the caregiver for my husband. There are many multi-year survivors on this site. Their help and experiences give us all hope. Also, many cancer sites are very scary and are not giving the most current information. Get your information from your father's cancer team and from this Board. Prayers for you and your father. I am sure that other Board members will give you information.
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
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    Dear Violet,I understand
    Dear Violet,

    I understand what you must be feeling right now. On December 27, 2009 my world got turned upside down with a phone call from my 78 year old dad. He started the call with I have something to tell you honey, I have been to the doctors and they told me I have Esophageal Cancer and so began my journey. I live 1200 miles away, in Delaware he is in New Orleans. Before his call I didn’t even know what Esophageal Cancer was. A great book to help you learn - 100 Questions & Answers About Esophageal Cancer available at http://www.amazon.com/Questions-Answers-About-Esophageal-Cancer/dp/0763745707. The doctors at Sloan Kettering (a top rated cancer center in New York City) gave the book to my dad when he went there for his second opinion.

    I didn’t know what to ask when I got his call; I got off the phone and cried. Then I called him back and asked questions and he told me not to worry. But of course I worried a lot. There is much you can do to help and much you should do.


    If the cancer has spread to your father’s lungs then he is probably Stage IVb and an operation is not possible to remove the cancer. Generally, when there is a tumor in the esophagus --- where was his located at the gastric junction or higher in the esophagus some lymph nodes can be involved because they wrap around the esophagus especially at the gastric junction.

    One thing you should have done immediately is to have his tumor tested for the HER2 gene receptor. If your dad is one of the lucky 20% he will be eligible for herceptin treatment which was just approved for treatment in esophageal cancer (It has been used in breast cancer for years).

    We need some more information to help. Where does your dad live, where is he getting treatment. What type of support system does he have? Is your mother alive --- who does he live with? Any other siblings nearby – can you count on them to help.
    You will need to know more about what type of help he will need, nutrition, hydration, schedule of his chemo and how many agents.

    I will write you more later --- there is much you can do even when you are so far away. If you can you should also see if your employer has FMLA available for use. At my job I can use my sick leave (I have about 4 months saved up) to go help with my dad. There were lots of forms to fill out but it is worth it and also I can take the time and not jeopardize my job. Also, you should ask your dad to have you put on the authorized list (A HIPPA release) to receive information from the hospital, doctors, insurance companies etc. You should also get all that information so you can help. I helped fill out forms, make appointments etc and spoke to the doctors directly.

    Right now thought take a deep breath your father and family will need you. This is a long and bumpy road. The odd gift of cancer though is to make you understand the important things, to take time to spend time with family, I talk to my dad all the time now, we talked a couple times a week before and we have spent a lot of time together the last year. There have been many joyous times this last year and tears and anger as well.

    But here we are almost one year later and my dad is still with us and just started a clinical trial at MD Anderson. I don’t want you to think that this has been easy it hasn’t and I am still scared and I don’t know what I will do when I can’t pick up the phone and hear my dad’s voice on the other end. But right now we are thankful for the days we have and I am hopeful for more days. This Christmas the family will gather in New Orleans and give thanks for the blessings we have. This Board, the members and the information have been a lifesaver. Indeed many here are more informed than many doctors giving medical care out there but listen and learn and lean on us.

    I will leave you with some words from Elizabeth Edwards . . . “The days of our lives, for all of us, are numbered,” she wrote. “We know that. And yes, there are certainly times when we aren’t able to muster as much strength and patience as we would like. It’s called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful.”

    Best wishes,
    Cindy
  • Unknown
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  • Violet_65
    Violet_65 Member Posts: 2
    #6
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    BMGky said:

    So sorry to hear of your father's illness
    The grief and fear you feel have been and are being felt by almost everyone who has come to this board for information. I have gained and continue to gain much comfort and information from the fine people on this Board. I hope your Father will let you have more information. When you visit him, you will be able to learn more I am sure. You didn't mention if your father has nearby people to be of support and assistance. While they have many meds to help with the side effects of chemo, oftentimes additional assistance is needed to take care of the patient. I have no idea but he may need even a jtube. Many, many on this site have had to deal with one. I was first very afraid of the tube but it was very simple to operate and was so helpful. I am the caregiver for my husband. There are many multi-year survivors on this site. Their help and experiences give us all hope. Also, many cancer sites are very scary and are not giving the most current information. Get your information from your father's cancer team and from this Board. Prayers for you and your father. I am sure that other Board members will give you information.

    Thank you
    Thank you for your kind response. I am very interested to hear from caregivers, survivors and those currently living with the disease.

    My father's long-time companion will be his caregiver. While I know she will do her best, I feel that his care may require more than she can deliver. She, herself, is a tiny, petite woman who has M.S. (fortunately she is currently asymptomatic) as well as osteoporosis. In addition, she does not drive. They live in Michigan where the weather is currently, and often, brutal. I was concerned about the logistics of who would get groceries? Who will take him to his appointments?

    Because my husband has just completed his classes and does not yet have a job, he generously offered to stay with my father to aide him in getting through chemo. I told my father of my husband's offer (my father is very fond of my husband) and reassured my father that he has back-up for those things his companion cannot perform. He sounded touched and appreciative. He generally does not accept help very well.

    Also, I've seen some posts that discuss where patients are being treated. My father is being treated at the University of Michigan Hospital and his oncologist is Dr. Susan Urba. I have a friend that used to work at the hospital, and she said Dr. Urba is good.

    As this disease is still quite new to me, I am thankful for all types of information.

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