long 5 months

tmclain
tmclain Member Posts: 11
edited May 2012 in Esophageal Cancer #1
Well i don't know where to start, so here goes. I went for a route checkup of an endoscopy and a colonoscopy in Jan of this year at hines VA Medical Center in Hines IL and was told i had Esophageal Cancer and after some more test i was told i had t2n0m0 and i should have chemo and RAD then surgery. I wanted a second a opinon so i look up some va centers around the area and found the VA in Milwaukee WI that deals with this type of cancer. I made a appoitment with the HEM/Onco doctor there when they had all the repots from Hines VA and they read the reports and they said the same I should have chemo and Radiation then surgery. they also ask me if i would like to take part of the new durg call HER2 i said sure because Hines was not on the list of Hospitals. Now i move to the Radiation doctor to start there and he comes in and said look i read the report from Hines and it is my opinon that all you need is surgery and you would be good to go so he stop the prosses of the HER2 and he was going to talk with the chemo doctors and surgeon to look at the reports to make sure, so they couldn't come up with an answer that all agree to so they had me go and do a new staging by their doctors and if it came out the same i would have surgery the next so had that done and it came back as T3N1M0 i was beside myself and ask how can this be had it grown that much from Jan 12 to Feb 6th and the endo doc said could have or that they (hines) didn't read it right. So to Make a Long story short here is what the ct scan at Hines had to say i had two enlarge lymph Nodes but within normal range with no MET's and the ENDO Doc at hines didn't think that were cancer or not sure. move forward Milwaukee VA and this is what the ENDO DOC had to say. Esophageal Adencocarcinom with envision of the muscular propria and abutting advent along with two paraesophageal lymph nodes this a T3N1 disease. the lymph are hypoechoic, well defined high perigastric measuring 1.4 cm not sure what that all means?. So surgery was cancel and had to start the process all over again and re apply for the HER2 program and wait two more weeks to start Chemo and Radiation and wait to see if i get into the program and get the drug
Which I did. so I went through the following for 6wks once a week of paclitaxel, carboplatin and the Drug Trastuzumab along with everyday of radiation I had my PET scan done on may 15th and came back all clear and the biopsy done may 17th and it came back normal also. During this time I am so scared about everything i don't want to know how bad all this stuff sounds and i am schedule for surgery june 7th now i think about the recurrence of everything. going out of my mine.

DX Jan 12 2012
T2N0M
DX Feb 6 2012
T3N1M0

Comments

  • BMGky
    BMGky Member Posts: 621
    #2
    Sorry but glad you found us
    EC is nothing to mess around with. There are many on here with more experience than I with just what is right and wrong. I am not a medical person; however, I will tell you what I understand. Ignore the statistics on the web. They are behind the research. Many people are having successful treatment. Most sadly, so many find it at a late stage and do not have the option of surgery. Yet, even they are experiencing opportunities to extend their life experiences.

    From what I understand: Chemo and radiation are an essential in almost all treatable cases. (I understand that some early, early, early stages get a different protocol but I know nothing.) Next: you are lucky to be able to have the surgery. It is good your scans seem clear; however, as I understand, surgery is still essential as those sneaky EC cells can hide. My husband had chemo/radiation and clear scans post treatment. Yet, when they removed his esophagus, there were still live cancer cells lurking underneath scar tissue in the removed esophagus. He had the Ivor Lewis form. It's rough. The MIE form is better and if you're eligible and your surgeon knows what he/she is doing, find that MIE specialist. Cancer centers at major teaching hospitals/centers have teams that do nothing but esophageal surgery and treatment. Since EC is rare, doctors may have studied it at one time, but unless they deal with it on a frequent basis, they may not know the latest information.

    With a few eating issues, i.e., don't eat too much; ice cream (once a favorite) doesn't like him anymore, regaining strength among other things come into play. But with the passage of time, things get much, much better. My husband is living a full life working fulltime, traveling, playing whenever he can, and has so many plans of things he wants to do, he wears himself out trying to do them all.

    He is two years post op and his last scan showed NED -- No evidence of disease. There are members on here who are going on nine years without recurrence. So, tackle that treatment with ful resolve and faith Come to this site often and ask any question. All or welome and none are trivial. Each person who faces it initially is shocked or in shock, knows nothing about the disease, and less about the treatment. This board can help. All our best to you.

    BMGky
    Wife of husband with EC T2N0MO
    Diagnosed December 2009
    Ivor Lewis April 2010
    Last PET scan February 2012 NED :)
  • jgwright
    jgwright Member Posts: 242
    #3
    BMGky said:

    Sorry but glad you found us
    EC is nothing to mess around with. There are many on here with more experience than I with just what is right and wrong. I am not a medical person; however, I will tell you what I understand. Ignore the statistics on the web. They are behind the research. Many people are having successful treatment. Most sadly, so many find it at a late stage and do not have the option of surgery. Yet, even they are experiencing opportunities to extend their life experiences.

    From what I understand: Chemo and radiation are an essential in almost all treatable cases. (I understand that some early, early, early stages get a different protocol but I know nothing.) Next: you are lucky to be able to have the surgery. It is good your scans seem clear; however, as I understand, surgery is still essential as those sneaky EC cells can hide. My husband had chemo/radiation and clear scans post treatment. Yet, when they removed his esophagus, there were still live cancer cells lurking underneath scar tissue in the removed esophagus. He had the Ivor Lewis form. It's rough. The MIE form is better and if you're eligible and your surgeon knows what he/she is doing, find that MIE specialist. Cancer centers at major teaching hospitals/centers have teams that do nothing but esophageal surgery and treatment. Since EC is rare, doctors may have studied it at one time, but unless they deal with it on a frequent basis, they may not know the latest information.

    With a few eating issues, i.e., don't eat too much; ice cream (once a favorite) doesn't like him anymore, regaining strength among other things come into play. But with the passage of time, things get much, much better. My husband is living a full life working fulltime, traveling, playing whenever he can, and has so many plans of things he wants to do, he wears himself out trying to do them all.

    He is two years post op and his last scan showed NED -- No evidence of disease. There are members on here who are going on nine years without recurrence. So, tackle that treatment with ful resolve and faith Come to this site often and ask any question. All or welome and none are trivial. Each person who faces it initially is shocked or in shock, knows nothing about the disease, and less about the treatment. This board can help. All our best to you.

    BMGky
    Wife of husband with EC T2N0MO
    Diagnosed December 2009
    Ivor Lewis April 2010
    Last PET scan February 2012 NED :)

    After Chemo and Rads
    Yes, indeed, now IS the time for surgery. It is a life changing thing, but with MIE (minimally invasive esophagectomy) you are out of the hospital fast, you recover fast, and you can get on with your life.

    And do it before the cancer has a chance to metastasize (spread). It took too long for me to be diagnosed and staged, and so I'm Stage IV, incurable, but I am treatable, and so I have decided to live as long and as happily as is possible.

    This is a scary journey, but we have lots of friends and fellow inmates/victims/sufferers/(etc) here.

    William will be along shortly with an almost overwhelming amount of links and information to make you a better informed person. And remember that all doctors are NOT created equal, and there are quite a number who are happy to treat you, but are not knowledgeable of the latest, most effective treatments. Second and even third opinions are critical, but time is even more critical now that you are an acceptable choice for surgery!!!

    --Jerry
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • tmclain
    tmclain Member Posts: 11
    #5
    jgwright said:

    After Chemo and Rads
    Yes, indeed, now IS the time for surgery. It is a life changing thing, but with MIE (minimally invasive esophagectomy) you are out of the hospital fast, you recover fast, and you can get on with your life.

    And do it before the cancer has a chance to metastasize (spread). It took too long for me to be diagnosed and staged, and so I'm Stage IV, incurable, but I am treatable, and so I have decided to live as long and as happily as is possible.

    This is a scary journey, but we have lots of friends and fellow inmates/victims/sufferers/(etc) here.

    William will be along shortly with an almost overwhelming amount of links and information to make you a better informed person. And remember that all doctors are NOT created equal, and there are quite a number who are happy to treat you, but are not knowledgeable of the latest, most effective treatments. Second and even third opinions are critical, but time is even more critical now that you are an acceptable choice for surgery!!!

    --Jerry

    after chemo and rads
    Jerry thanks for writing back.

    Iam not sure what you mean about you are incurable but treatable, can you explain that to me not sure what you mean?

    thx
    tom

    DEX 04/06/12
    T3N1M0
  • jgwright
    jgwright Member Posts: 242
    #6
    tmclain said:

    after chemo and rads
    Jerry thanks for writing back.

    Iam not sure what you mean about you are incurable but treatable, can you explain that to me not sure what you mean?

    thx
    tom

    DEX 04/06/12
    T3N1M0

    Definitions
    If the doctors could do surgery and remove the cancerous esophagus (and any close lymph nodes), and that was ALL the cancer they found, that is considered "curable".

    In my case, it has spread to my adrenal glands, which means that there are little "cancer buddies" all over my system, and so it WILL spread. So surgery isn't really an option. However, with right kind of chemo or other appropriate treatment, I can live possibly for many years. Or maybe not. It just depends on how my body responds. So I have somewhere between 6 months, and 20 years. I'll opt for the 20... If I can get it.

    "I'm going to live forever, or die trying!" --Woody Allen

    --Jerry
  • tmclain
    tmclain Member Posts: 11
    #7
    jgwright said:

    Definitions
    If the doctors could do surgery and remove the cancerous esophagus (and any close lymph nodes), and that was ALL the cancer they found, that is considered "curable".

    In my case, it has spread to my adrenal glands, which means that there are little "cancer buddies" all over my system, and so it WILL spread. So surgery isn't really an option. However, with right kind of chemo or other appropriate treatment, I can live possibly for many years. Or maybe not. It just depends on how my body responds. So I have somewhere between 6 months, and 20 years. I'll opt for the 20... If I can get it.

    "I'm going to live forever, or die trying!" --Woody Allen

    --Jerry

    definition
    Funny you said they found mets on your adrenal glands when i had my PET scan they found one on mine about a half cm and after a ct scan to make sure they came up with nothing and said it wasn't and just watch it. Scared the hell out of me.



    tom
  • Unknown
    Unknown
    #8
    tmclain said:

    definition
    Funny you said they found mets on your adrenal glands when i had my PET scan they found one on mine about a half cm and after a ct scan to make sure they came up with nothing and said it wasn't and just watch it. Scared the hell out of me.



    tom

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator

Discussion Boards