My husband has recurrent esophageal cancer

mrsbotch
mrsbotch Member Posts: 349
edited March 2014 in Esophageal Cancer #1
In Feb 2009 my husband, who had problems swallowing, had a Min evasive esophagectomy. He was stage 11B. No chemo or radiation was given, just the surgury
He has stayed healthy until Approx June of 2010. He then started to lose weight and started choking on his food. It kept getting stuck. On Aug 5th of this year he went back to the surgeon for another dialation and he said he thought he saw recurrent cancer.He told us to see an oncologist for chemo and radiation. We had a PET scan on Aug 11th 2010 and it showed NED. We were thrilled. The surgeon said maybe he had residual scar tissue, infection , or dead cancer cells. We did nothing as we were so happy PET scan came out great
Then His throat kept closing up and he was losing weight like crazy.
We went back to the surgeon on Sept 17th and he put a stent in. It did not work great and he had to remove it(It took 2 hrs to remove) and put another one in. This one is working .
The surgeon never mentioned the cancer again. Now on Sept 28th 2010 he had a thoracoscopy to do a biopsy and now he has Stage 1V adenocarcinoma of the diafram and the pleura with a possible node involvement. We are devasted. The surgeon said it is inoperable, incurable, and may or may not go into remission with chemo.

Comments

  • unclaw2002
    unclaw2002 Member Posts: 599
    Hi,
    I am so sorry to hear

    Hi,

    I am so sorry to hear your news.

    One thing Paul mentioned is getting the tumor tested - for genetic markers to see if targeted treatments may be available. You need a slide with an unstained tumor specimin. These tests don't take very long for the results (a week at most) and can indentify any special characteristics of the tumor which targeted treatments might be able to be used. One example is there is a test called the HER-2 and if you are the lucky 20% who has this marker then they can use herceptin to treat the tumor. This has been very effective in breast cancer treatment and is now being used in esophageal cancer treatment. There are also EGFR markers used with a drug in clinical trials right now, Erbitux, which has had very promising results. Genetic testing of tumors and attacking those receptors is a big area of study right now and one which is showing real promise.

    One caution --- get to a cancer treatment center that specializes in esophageal cancer. Paul gave you a very good list to start from.

    Good luck,
    Cindy
  • paul61
    paul61 Member Posts: 1,391 Member
    I would consider a second opinion
    Hello,

    I am so sorry your husband has had a recurrence. There are other Stage IV survivors on this board that will tell you there is treatment at that stage and sometimes the treatment is very successful.

    I am a bit perplexed that Stage IV would be so hard to identify, particularly with a PET scan. I am also surprised the surgeon did not do a biopsy at the time he saw what he thought was recurrent cancer to validate his suspicions. Have you considered going to a hospital with expertise in treating esophageal cancer for a second opinion?

    Since your husband has not had chemotherapy or radiation treatment before; I would want to get a tumor biopsy and get it tested to insure the best treatment regimen is identified.

    Some of the top cancer centers in the US include:

    1. University of Texas, M.D. Anderson Cancer Center, Houston, TX
    2. Memorial Sloan-Kettering, New York, New York
    3. Mayo Clinic, Rochester, Minnesota
    4. Johns Hopkins, Baltimore, Maryland
    5. University of Washington, Seattle, Washington
    6. Dana-Farber Cancer Institute, Boston, Massachusetts
    7. Massachusetts General Hospital, Boston, Massachusetts
    8. University of California, San Francisco Medical Center, California
    9. Cleveland Clinic, Cleveland, Ohio
    10. Ronald Reagan UCLA Medical Center, Los Angeles, CA

    Your post does not mention where you are located but hopefully one of these centers are within reasonable travel distance.

    Some information that would be helpful in our making suggestions would be:

    How old is your husband and does he have any other medical issues?
    Where did he receive treatment originally and where is he receiving treatment now?
    What testing has your husband had to establish the current Stage IV staging?
    Is he still having difficulty swallowing with the second stent?

    I know you are shocked and disappointed at the current turn of events. At this point, time is of the essence, and we need to find the best treatment options quickly. Once again; I would consider a second opinion if you are not at a recognized cancer treatment facility.

    If you husband is still having difficulty maintaining his weight with the second stent I would discuss the option of a “j-tube” with your oncologist or surgeon. That would help maintain his weight during chemotherapy or radiation treatment.

    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
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • This comment has been removed by the Moderator
  • This comment has been removed by the Moderator
  • Edward W
    Edward W Member Posts: 30
    Second Opinion
    I would definetley get a second opinion. I was diganosed stage IV when I was 62 and a canidate for aggressive chemo and radiation therapy. Which was done. Then a complete Esophagealectomy. That was 10 years ago. I am at this time cancer free.
  • linda1120
    linda1120 Member Posts: 389
    Edward W said:

    Second Opinion
    I would definetley get a second opinion. I was diganosed stage IV when I was 62 and a canidate for aggressive chemo and radiation therapy. Which was done. Then a complete Esophagealectomy. That was 10 years ago. I am at this time cancer free.

    Edward W
    You are amazing! You give me hope for my husband. They haven't staged him yet, but think he is a stage 111. We are going for a EUS next week. He has gone through his chemo and one more week of radiation. Thank you for sharing your story.

    God Bless,

    Linda