Searching for insights, information and an understanding of what we may expect

USMC1737
USMC1737 Member Posts: 5
in Esophageal Cancer #1
It has been a whirlwind these past seven weeks and we would be grateful for any insights. We are learning, asking questions and trying to educate ourselves. Brief History - Tom had Barretts Esophagus 12 years ago which was treated. Since then he was advised to get a scan done every couple of years. At the most recent scope he was disgnosed with esophageal cancer and we have gone through biopcy, CT scans, PET scans etc. He has had no symptoms.

Where we are now is - Stage 2, and we are trying to determine with a repeat of one more test to determine if it is a T2 or T1B depth tumor. If T2 - we will start with chemo and radiation, become part of a clinical trial which appears positive (I read of positive results with this "cocktail" in this forum already) and then we will do the surgery. PET and CT scan show no lymph nodes or other organs involved which we are very grateful for.

If it is a T1b depth (not in the muscular layer) we have been advised to go straight to the surgery. All indications at this time look like it will be a T1b and the team will confirm surgery but we are making sure with the additional test.

The surgeon has explained the surgery and some of the complications - but we still have questions about the reality of the surgery, what he can expect during his hospitalization and afterward. I have read several informative posts that have been helpful when it comes to his ability to eat, nutrition etc. We will be asking the nurses when we go in next - asking more details. But looking for insights here as well. Such as

What can he expect during his hospitalization after surgery?

Have read about relearning how to eat - any suggestions on how to best manage this process?

He has concerns about how this will effect him sexually?

How soon after surgery will he be able to do some normal activities? Drive? Work?

The medical team suggests that if this is a Stage 2, T1b and everything goes well with surgery - that it is likely that chemo and radiation are not necessary - does that sound reasonable?

Is there any other books or articles that anyone recommends to help better manage this process?

Any help or insights are welcome

Comments

  • BMGky
    BMGky Member Posts: 621
    #2
    Sorry to hear of your husband's diagnosis
    I understand your concerns and your questions.

    First: You need more information as you make decisions. Have you had the staging scope. I think it is called an EGD or something like. It will give you the staging information you need.

    Second: Learn about the different protocols of treatment. I understand that from my limited knowledge, one of the successful protocols, the one which my husband underwent, is first to have intensive chemo and radiation, brief break, then surgery. My husband, when this protocol was set up for him, was thought to be Stage IIB. Following surgery, he was later found to be Stage 11A.

    Third: If possible, and if can be attained quickly, perhaps a second opinion at a major cancer center.

    PLEASE UNDERSTAND, this is NOT medical advice. Your physician's are there and know the situation. Just giving our experience.

    Don't worry about the hospital and eating. First, get through the treatment. It's doable.

    As to your other concerns about living a full and normal life, my husband who was 70 when diagnosed, although it was with great challenge, worked as could during treatment and post op. He has just had his two year post op PET and there is no evidence of disease or NED. (Yay!) He is practicing full time, busy as can be and enjoying every aspect of being alive and is so blessed as to have the opportunity to live. He sometimes has eating issues but he's learned what to do (If he will do it). He eats anything he wants but cautious as to sweets and heavy, doughy foods.

    There are others on this board who are so knowledgeable about what to do. It will help them help you if you can let them know what area you are located and the medical team that is treating your husband.

    The diagnosis is a shock. Depending on responses to medicines, treatment, the road may be bumpy getting there; however, it is a privilege to be offered the opportunity to have surgery.

    Please contact this board with more information and keep checking in. Also, don't rely on the statistics and the other sites. The information on the web has not kept up with the many progresses that have occurred. Yes, it is a scary diagnosis, but listen to those who post here. They are living this diagnosis.

    Best of luck. BMGky
    Dx Dec 2009
    T2N0M0
    Ivor Lewis April 2010
    Feb 2012 PET scan NED
  • USMC1737
    USMC1737 Member Posts: 5
    #3
    BMGky said:

    Sorry to hear of your husband's diagnosis
    I understand your concerns and your questions.

    First: You need more information as you make decisions. Have you had the staging scope. I think it is called an EGD or something like. It will give you the staging information you need.

    Second: Learn about the different protocols of treatment. I understand that from my limited knowledge, one of the successful protocols, the one which my husband underwent, is first to have intensive chemo and radiation, brief break, then surgery. My husband, when this protocol was set up for him, was thought to be Stage IIB. Following surgery, he was later found to be Stage 11A.

    Third: If possible, and if can be attained quickly, perhaps a second opinion at a major cancer center.

    PLEASE UNDERSTAND, this is NOT medical advice. Your physician's are there and know the situation. Just giving our experience.

    Don't worry about the hospital and eating. First, get through the treatment. It's doable.

    As to your other concerns about living a full and normal life, my husband who was 70 when diagnosed, although it was with great challenge, worked as could during treatment and post op. He has just had his two year post op PET and there is no evidence of disease or NED. (Yay!) He is practicing full time, busy as can be and enjoying every aspect of being alive and is so blessed as to have the opportunity to live. He sometimes has eating issues but he's learned what to do (If he will do it). He eats anything he wants but cautious as to sweets and heavy, doughy foods.

    There are others on this board who are so knowledgeable about what to do. It will help them help you if you can let them know what area you are located and the medical team that is treating your husband.

    The diagnosis is a shock. Depending on responses to medicines, treatment, the road may be bumpy getting there; however, it is a privilege to be offered the opportunity to have surgery.

    Please contact this board with more information and keep checking in. Also, don't rely on the statistics and the other sites. The information on the web has not kept up with the many progresses that have occurred. Yes, it is a scary diagnosis, but listen to those who post here. They are living this diagnosis.

    Best of luck. BMGky
    Dx Dec 2009
    T2N0M0
    Ivor Lewis April 2010
    Feb 2012 PET scan NED

    Thank you
    Thank you for the good wishes and positive story. Gives Tom and I assurance that what we are going to go through the next 4 to 6 months will be worth it. Tom booked a lifetime dream trip to Ireland the week prior to the diagnosis. Our goal is to make that trip and have a wonderful, life affirming time. We know there are no guarentees but we will do our best to get through this together and to be together for the next 30-40 years. Tom is 51 and I am planning to have him around for a long time. This forum will be a great help. We are the type of people who want to know what to expect, plan for it and will work through everything better if we know what to expect. I do not expect that Tom will be a very good patient - but he will be better if he understands what to expect and prepares for it. I know we will get additional insights here from people who are living it.

    As for the additional information - yes Tom has had the staging scope. We are repeating the ultra-sound, scope on Wednesday (the names of all these tests don't yet roll of my tongue - not sure of the name)before possible surgery just to make sure that surgery first is the best option. Tom is currently working through the VA. We started at the Hines (which is associated with Loyola) facility in Chicago and have moved to the Zamblocki VA (which is associated with the Froedart facility) in Milwaukee WI. We have seen several doctors and what they seem to be telling us appears to be in line with normal standard practices. In Milwaukee they have appeared to be very thorough, have spent time answering questions and we appreciate the fact they want to redo the scope to be 100% sure that the path we are starting has the potential for the best outcome.


    Apprecaite the comments so very much.

    Catherine
  • Ginny_B
    Ginny_B Member Posts: 532
    #4
    Semper fi. Keep up the good
    Semper fi. Keep up the good fight!
  • Unknown
    Unknown
    #5
    USMC1737 said:

    Thank you
    Thank you for the good wishes and positive story. Gives Tom and I assurance that what we are going to go through the next 4 to 6 months will be worth it. Tom booked a lifetime dream trip to Ireland the week prior to the diagnosis. Our goal is to make that trip and have a wonderful, life affirming time. We know there are no guarentees but we will do our best to get through this together and to be together for the next 30-40 years. Tom is 51 and I am planning to have him around for a long time. This forum will be a great help. We are the type of people who want to know what to expect, plan for it and will work through everything better if we know what to expect. I do not expect that Tom will be a very good patient - but he will be better if he understands what to expect and prepares for it. I know we will get additional insights here from people who are living it.

    As for the additional information - yes Tom has had the staging scope. We are repeating the ultra-sound, scope on Wednesday (the names of all these tests don't yet roll of my tongue - not sure of the name)before possible surgery just to make sure that surgery first is the best option. Tom is currently working through the VA. We started at the Hines (which is associated with Loyola) facility in Chicago and have moved to the Zamblocki VA (which is associated with the Froedart facility) in Milwaukee WI. We have seen several doctors and what they seem to be telling us appears to be in line with normal standard practices. In Milwaukee they have appeared to be very thorough, have spent time answering questions and we appreciate the fact they want to redo the scope to be 100% sure that the path we are starting has the potential for the best outcome.


    Apprecaite the comments so very much.

    Catherine

    This comment has been removed by the Moderator
  • USMC1737
    USMC1737 Member Posts: 5
    #6
    unknown said:

    This comment has been removed by the Moderator

    Thank you
    Thank you - we are overwhelmed with the time you spent sharing this great information and insight. Your generosity, as well as everyone else who has/will answer, is appreciated.
    Catherine and Tom
  • Unknown
    Unknown
    #7
    USMC1737 said:

    Thank you
    Thank you - we are overwhelmed with the time you spent sharing this great information and insight. Your generosity, as well as everyone else who has/will answer, is appreciated.
    Catherine and Tom

    This comment has been removed by the Moderator
  • captdave
    captdave Member Posts: 153
    #8
    I have had Barret's for over
    I have had Barret's for over 15 years and have been in surveillance the entire time. I was diagnosed with carcinoma and after having a endoscopic mucosal recection and an ultra sound it was determined that i had submucosal carcinoma. I opted to have an esophagectamy rather then photo or radio frequency ablation. The surgery was very successful and the doctors determined that i was "cured" and needed no futher treatment due to the pathology results and the very early stage cancer i had. I am very comfortable with this and believe that if your doctors are confident with the diagnosis and the containment of the cancer that you should be as well. that being said I would only feel that way if the medical team you are seeing is a top notch center of Excellency for EC not a random community medical center.

    Thoughts and prayers for you and tom as you face this and make these difficult decissions.

    David
  • captdave
    captdave Member Posts: 153
    #9
    As William indicated it is
    As William indicated it is vital to receive treatment at a major cancer center! I had the traditional surgery (not the minimally invasive one) at the University of Washington. I choose it over the MI because the length of hospital stay was essentially the same, the time in surgery was longer for the MI procedure, and the size of incision was very similar. another consideration for me was that none of the surgeons at the UW preformed the MI and I would have had to gone to another hospital. One thing that William mentioned that I did not find true in my surgery was that my surgeon doesn't believe in placing chest tubes or feeding tubes unless he has to. I didn't need either. I went to the ICU for less than 12 hours was off pain meds except to get comfortable to fall asleep (sleeping in a head elevated position takes a little getting used to) and was driving with in one week of being discharged and walking two miles a day before leaving the hospital. I have lost 15 to 20 pounds and am at my "ideal: weight and feel that this will be my new 'set" weight for the rest of my life. As William said selecting a surgeon is the biggest choice to be made and will determine how well Tom does after his surgery. I am in a physically demanding profession that requires being 100 percent fit for duty and i will be returning to work two months after my surgery. I know this isn't the norm but for a young man in good shape who has caught the EC early and has a great surgical team and support of his family it is possible. I know I am the exception to the rule here but I want you to know that this isn't the end of life its just another chapter. Attitude has everything to do with recovery from the surgery! Tom will need to be totally committed to the surgery and to doing whatever is necessary. Personally I set goals and had my eye on the prize at the end of the tunnel. A positive attitude will speed healing help reduce preceived pain and keep you going forward.

    as for sex, well there doesn't seem to be any problem there at all! He most likely wont be interested for a month or so but as he gets feeling better his libido will increase at least that was my experience.

    Any time I can be of help please feel free to call upon me.

    david

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