July 4th, Diagnosed w/ stage IVb

hope2010
hope2010 Member Posts: 8
edited March 2014 in Esophageal Cancer #1
Hi,
My husband first started complaining of pain in chest and back end of May. Visited his primary doctor who ordered blood work and Ultra Sound of stomach, did an EKG. All came back as ok. He finally told the doctor that he was still hurting bad and he was ordering a full Stress Test. My husband finally asked to see a Gastroenterology doctor to have the EGD (endoscopy of the Esophagus). We had another 1 week delay and the Post Op diagnosis was Mid-esophageal mass (malignant tumor of the lower-mid esophagus) biopsies taken and PET/CT scans to follow.
Delays once again but we were able to get some liquid pain medicine to help him sleep. After many phone calls and appeals, we have finally started getting some appointments and had a first visit with the Lakeland Regional Cancer hospital. The doctor there was very upfront in telling us the results of PET/CT showed the cancer had spread to lymph nodes and spine, making the cancer inoperable. They can do Radiation & Chemo to shrink the tumor and hopefully stop the spread. She wants to put in a feeding tube as the tumor will expand initially and close off any food getting down. Once it has shrink-ed then he can started with eating once again.
We have an appointment with a local Radiologist this week to get his opinions of treatment. If not satisfied there are another group of doctors in St Pete.

I would like to hear from some others going through this same type of stage and what treatments they had, side effects, etc. Anything information I can receive gives me that much more knowledge of questions to bring to our appointments.

One other note, my husband was in Viet Nam where Agent Orange was heavily used and I am curious to see if any others out there were diagnosed with this type of cancer. I have submitted a claim with the VA and understand it will be a battle so the more info we have the better.

The battle has just begun and we are in it for the long haul.

JB

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Welcome
    Hi JB welcome to you and your husband. You have found a wonderful informative site here. There is another woman who just posted yesterday about her brother in law, also a Vietnam vet, also exposed to Agent Orange. Her screen name is Cruiser1. She is also in Florida. I am sure you two can get together and share stories. I was a caregiver for my dad. He passed away this past March from ec with mets to the liver. He too was inoperable. He did have 6 wks of chemo and radiation, the tumor did shrink and he was in remission for one year. In December we found out that the primary ec had metastisised to his liver.

    I would also agree with the feeding tube. Most people here have had one. My dad did not need one, but he did have to have a stent put in his esophagus to open it up from too much scar tissue. The radiation treatments tend to cause scar tissue. There are quite a few well known cancer centers in Florida.

    I wish you and your husband the best of luck. You are just at the beginning of a very long roller coaster ride of many ups and downs. It is a treatable cancer, and a lot of people here have beat it.
    I will be thinking of you and praying for you. Keep in touch.
    Tina
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
    JB,
    My father was also a
    JB,

    My father was also a vietnam vet exposed to agent orange. He had none of the risk factors for EC and wonders if his EC is a result of exposure to agent orange. He has never been tested for exposure to agent orange and given the battle with the EC - I really haven't spent time on investigating the agent orange link. If you get any information I would greatly appreciate it if you would share with the group.

    Cindy
  • hope2010
    hope2010 Member Posts: 8
    #4
    unclaw2002 said:

    JB,
    My father was also a
    JB,

    My father was also a vietnam vet exposed to agent orange. He had none of the risk factors for EC and wonders if his EC is a result of exposure to agent orange. He has never been tested for exposure to agent orange and given the battle with the EC - I really haven't spent time on investigating the agent orange link. If you get any information I would greatly appreciate it if you would share with the group.

    Cindy

    Agent Orange
    Hi Cindy,

    When you have time go to the Agent Orange site online and they have information on how to be tested for Agent Orange. I also contacted the Veterans Affairs officer and put in an informal disability claim, this starts the long process. I have read from other Agent Orange wives that have gotten their claims approved after a very lengthy process. The main thing she strives is get as many letters for the doctors as you can to say it could be as a result of Agent Orange.
    Right now our battle is just beginning and I don't have time to deal more with the VA. We did have our local VA clinic do blood work and saw a doctor, who was compassionate but her hands our tied for this type of cancer. She did say a bill is in Congress to get approval for throat, neck, EC. Although these things move at a snails pace.
  • Unknown
    Unknown
    #5
    This comment has been removed by the Moderator
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #6
    unknown said:

    This comment has been removed by the Moderator

    thank you so much for
    thank you so much for sharing your story about your spouse Bailey for hope and others who are looking for a positive and inspiring story to encourage them thru their journey of stage 4 EC. Your post does more to help people than any other source incl medical journals doctors, or the world around us.

    Each time i meet or speak with a cancer survivor or caregiver in CSN, especially with EC late stage cancer, Ill refer each one to your post here.
  • Anj_and_Rob
    Anj_and_Rob Member Posts: 29
    #7
    unclaw2002 said:

    JB,
    My father was also a
    JB,

    My father was also a vietnam vet exposed to agent orange. He had none of the risk factors for EC and wonders if his EC is a result of exposure to agent orange. He has never been tested for exposure to agent orange and given the battle with the EC - I really haven't spent time on investigating the agent orange link. If you get any information I would greatly appreciate it if you would share with the group.

    Cindy

    Exposures
    My husband didn't have any of the risk factors either (36 non smoker, non drinker, no reflux). The oncologist thinks he must have been exposed to something. He was in Iraq stationed close to the burn pits there which correlates with how long they think he's had his cancer. We put in a claim with the VA as well so we'll see what happens, they said with all the medical documentation and sworn statements from his fellow soldiers we provided it would take 4-6 months for them to make a decision. I don't hold out hope that this will be an easy process but at least it's started now.

    Anjanette
  • cruiser1
    cruiser1 Member Posts: 16
    #8
    Tina Blondek said:

    Welcome
    Hi JB welcome to you and your husband. You have found a wonderful informative site here. There is another woman who just posted yesterday about her brother in law, also a Vietnam vet, also exposed to Agent Orange. Her screen name is Cruiser1. She is also in Florida. I am sure you two can get together and share stories. I was a caregiver for my dad. He passed away this past March from ec with mets to the liver. He too was inoperable. He did have 6 wks of chemo and radiation, the tumor did shrink and he was in remission for one year. In December we found out that the primary ec had metastisised to his liver.

    I would also agree with the feeding tube. Most people here have had one. My dad did not need one, but he did have to have a stent put in his esophagus to open it up from too much scar tissue. The radiation treatments tend to cause scar tissue. There are quite a few well known cancer centers in Florida.

    I wish you and your husband the best of luck. You are just at the beginning of a very long roller coaster ride of many ups and downs. It is a treatable cancer, and a lot of people here have beat it.
    I will be thinking of you and praying for you. Keep in touch.
    Tina

    Hi Tina,
    This is my sister
    Hi Tina,

    This is my sister so glad she was able to join the site and get the much need encouragement and information that will be needed to fight the battle of the EC. Thank you.
  • cruiser1
    cruiser1 Member Posts: 16
    #9
    hope2010 said:

    Agent Orange
    Hi Cindy,

    When you have time go to the Agent Orange site online and they have information on how to be tested for Agent Orange. I also contacted the Veterans Affairs officer and put in an informal disability claim, this starts the long process. I have read from other Agent Orange wives that have gotten their claims approved after a very lengthy process. The main thing she strives is get as many letters for the doctors as you can to say it could be as a result of Agent Orange.
    Right now our battle is just beginning and I don't have time to deal more with the VA. We did have our local VA clinic do blood work and saw a doctor, who was compassionate but her hands our tied for this type of cancer. She did say a bill is in Congress to get approval for throat, neck, EC. Although these things move at a snails pace.

    Agent Orange
    Hi Cindy,

    This is some information I found for my sister (JB) that maybe of help to you too.

    I found this information on the Cancer Compass. Check out the Admiral Zumwalt report at this link.

    http://www.veteransresources.org/2010/05/agent-orangezumwalt-report/


    RE: VietNam Vet seeking Info on Espohageal Cancer and Agent Orange Relationship
    by Susan4951 on Thu Jul 01, 2010 07:58 AM
    Quote | Reply
    I am the widow of a Vietnam veteran who died from EC in 2006, at the age of 57. He filed a claim for his cancer but was denied. After his death I continued his pending claim, was denied, then appealed, and won my appeal for DIC and accrued. The BVA stated that my husband had enough evidence in his file at death to have won at the regional level and the evidence he had were doctor's letters stating that his cancer was more likely than not caused from his exposure to agent orange. I can only tell you that without doctor's letters (and the more the better)you will not have a chance as the only thing the VA has against your claim is their VA doctor opinion. The one piece of evidence my husband did submit was the Zumwalt report. You can access this via the internet. It's a very large report and you do not need to submit the entire report to the VA. Just copy the first several pages where Admiral Zumwalt states that dioxin causes gastric/esophageal cancers. You could also take this report to your doctors and they can use it to base their opinion or rational on.
    There is much info regarding filing a claim for agent orange on the Military.com web-site.
    Susan

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