New to site and scared!

cindyruggs Member Posts: 24
edited January 2012 in Esophageal Cancer #1
In October, 2011 we went to the doctor because my husband, of 26 years, was feeling tired and a little short of breath. The doctor said he was severely anemic so she sent us to the hospital for blood and to look for a source of bleeding. He had NO other symptoms. They scheduled an Endoscopy and discovered a very large bleeding mass on his esophagus. The doctor said this does not look good, we also see a mass on his liver on the CT scan. Within three days we were told it was EC, stage IVB. Mets to several lymph nodes and liver.

We were and are completely in shock. He had NO symptoms, and had just had a complete physical a few months before. How can he be so sick and we did not know? How can the diagnosis be so grim and yet he still feels really good?

My husband completed three weeks (15 rounds) of radiation to stop the bleeding. We were told this is not the usual treatment, as his cancer was too far advanced for radiation but this was to help slow bleeding. He received several blood transfusions and then had a port put in for chemo. To date he has completed 4 rounds of Chemo - Cisplatin and 5FU and Trastuzumab. He tested positive for the HER-2 so that is why the Trastuzumab. He has done pretty well on Chemo, just fatigue and nausea, so far not as bad as we thought. Friday, January 27, we had the repeat PET scan and we are waiting on results now.

The waiting is almost unbearable, I am so anxious about the results. What should we expect from the PET scan after the treatment he has received so far? Doctor said we should "hope" for 30-50% reduction? Is that what others have been told too? Just not wanting to get my hopes up to high for just 4 rounds of chemo.

I have read several of your posts, you all KNOW what we are going through. I appreciate any feedback. You all KNOW the statistics and our doctor has been very honest with my precious husbands prognosis.




  • sangora
    sangora Member Posts: 213
    Cindy, I am sorry to have to welcome you to our little band, but glad you found us. You will feel and get much support here. I too am a stage IV and have been getting chemo for close to 22 months and am stable. I have issues like a feeding tube, but still live independently and most of the time feel pretty good. The biggest problem with EC is that by the time it is discovered the individual is a stage IV. It is often initially assumed to be indegestion and what not. I was a four when discovered. I had a massive tumor in the esophagus and spread to the liver, though only a very small area in the liver which was cleared up in my initial chemo and radiation. The radiation completely killed the tumor only for it to come back this past June. I am on my 5th chemo drug. I am sorry to say that this is a real roller coaster ride for those involved, but if you can set your head and your husband his, to live each day as it comes, don't get hung up on the numbers and what MIGHT happen 6 months down the road, you can enjoy much time together. We all seem to handle the chemo and radiation differently. I have been extremely lucky. The radiation was totally uneventful and my chemo has been for the most part smooth. Anytime you need a shoulder, you will find one here. Keep us posted on hubby's progress. Sam stage IV
  • paul61
    paul61 Member Posts: 1,391 Member
    Welcome to our little EC family

    I am so sorry that you have found us under these circumstances. It is difficult to predict the results of the PET scan since; as I am sure you are tired of hearing, "everyone responds differently to chemotherapy".

    But please know that you will find a number of Stage IV survivors here that are living with cancer on a daily basis. As Sam said above; when you are dealing with cancer, you have to learn to live each day for that day. We who are survivors view each day as a gift, not knowing how many more days are ahead.

    We will be sending positive thoughts and prayers your way and hoping for the best.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Rick0311
    Rick0311 Member Posts: 38
    Welcome Cindy

    I wanted to welcome you and let you know I will keep you, your husband and your family in my thoughts and prayers.

    Richard (Rick) Watson
    Neoga, Illinois

    DX – 0411
    EC – T2N2M0
    Chemo – Cisplatin, four treatments
    5FU, four treatments, five days times 24 hours each time
    MIE – 083111
    Barnes Hospital, St Louis
    Dr Brian Meyer
  • Proactive Daughter
    Welcome Cindy
    Hi Cindy,

    I read your post and I can relate in that I am very fearful of what is to come as well. I come here often for comfort. Everyone here is so great at giving advice and offering an ear when you need it. I don't know very much about EC, but everyone here has lots of experience and information to help.

    I am thinking of you and your husband,


  • ritawaite13
    ritawaite13 Member Posts: 236
    Hi Cindy
    Welcome to the board. I always hate to welcome yet another person with EC to this board but it truly is the best source of information and support available. EC typically is not diagnosed until it's advanced so that's how your husband has gone from what you thought was a healthy guy to a guy with a serious illness. Most people just shrug the symptoms off as indigestion or bad heartburn. Then comes the trouble with swallowing followed by unexplained weight loss and that's what drives most people to the doctor for some testing. WHAM - BAM you're diagnosed with EC and you're in for the roller coaster ride from hell.

    You're right, the waiting for test results is almost unbearable. There is no other choice available but to just wait...and wait...and wait.

    While no cancer is good, this one is especially tough. There are stage IV people on here who are doing okay - some with treatment, some with no treatment. Some choose the quality over quanity of life and that's a very personal decision. There is no sugar coating of anything on here so just be ready for very frank and honest answers to your questions. Unfortunately, we have lost several people from the board in the last 6 months but their caregivers (like me) are still checking in here to try to give advice and support to others. My own husband lived just 15 weeks after diagnosis. Many have more time but they sometimes also have many more complications to deal with.

    I'm sure there will be others signing on to welcome you shortly Cindy. Try not to let the cancer take over your whole lives. I'm sure you're brain is feeling overwhelmed right now but try to not let it consume you. It's there with all kinds of complications but the two of you are together so try to focus on some good together time. I don't know how else to say this but love deep and have meaningful conversations. None of us know how long we have on this earth and we should ALL live each and every day to the fullest.
    Hugs, Rita
  • fredswilma
    fredswilma Member Posts: 185
    Hi Cindy
    Welcome to our little online family, I am so sorry that you have found yourself here. I and many others here can relate to how shocked and scared you are feeling and the frustration of waiting on results (that never goes away)my husband was diagnosed 17mths ago at stg ivb, with mets to the lungs and distant lymph nodes, he now also has mets to the bone and so is palliative care, when he was first diagnosed we knew he had lost weight weren't to concerned as he could afford (at that stage) to loose a few pnds, he had always suffered from heartburn and we didn't even think that that could be such a huge problem, so yes I do understand your shock.
    If I could give you any advice now it would be to really do all the things you can together while your husband feels so good, everyday is a blessing and even more a blessing when your loved one is feeling well, do not let cancer rule your life, it becomes like a white elephant sitting in your home, nobody wanting to admit its there yet it is for all to see.
    Lastly no-one can predict your PET scan results, I along with everyone here will be hoping for the very best results but as you will learn no two cancers are the same, one other thing take a notebook with you write questions you may have and then the answers, because when you make an appointment with the Onc, you also get an onset of mushy brain it goes with the territory, will be thinking of you and praying those results are positive.