New Stage 3 Caregiver..Correction Stage IVb

JaneO
JaneO Member Posts: 40
edited December 2011 in Esophageal Cancer #1
I recently joined this site looking for others who have been effected by EC. I have read alot of the blogs and it is a comfort to finally be able to find answers to some of the things I have wondered about. My bf was diagnosed July 2011 just after his 51st birthday. No one in my family ever had cancer so I have to admit I was very uneducated on the subject. After getting through the initial shock and anger, he has just completed six rounds of chemo. The oncologist has sent him to a couple of surgeons, but they are not keen on performing the surgery. He has told us to send his labs and scans to other surgeons. We like his oncologist a great deal, but I wish he would be straight up with us. He believes because Jack is young, surgery would be a good idea, but I really wonder how it would effect his quality of life. Are we supposed to search the country for a surgeon that would do it? We have a couple in mind and he is sending the information to them. It's frustrating not having a real plan now since chemo ended. It's so hard to know if you are doing the right thing. Thanks for listening!!

Comments

  • Bobs1wife
    Bobs1wife Member Posts: 150
    #2
    JaneO
    This is a wonderful group with a wealth of information. It is good that you are posting as everyone can be of great help to you.

    It is hard to understand why you would have trouble finding someone to do surgery on someone with a true stage 3 diagnosis. Maybe if you let us know more about where you are located, if you are willing to travel, and more about your situation it would help. Are there other medical conditions that the surgeons are concerned with? Why are they balking? Something just doesn't sound right. There is a time frame from the completion of chemo to surgery that is optimal. We were told 4 to 6 weeks after completion of chemo, so time is an issue. Surgery is a must, if a candidate for surgery, to have a chance of a cure. Linda
  • Freida
    Freida Member Posts: 182
    #3
    JaneO
    Does he have other
    JaneO
    Does he have other health problems? We found out today that my husband, Bill, is not considered a good candidate for surgery because of his other health problems (we were half expecting that news as he does have many health problems). His anticipated protocol (a few more test to go first) is 2 months of chemo followed by 6 weeks chemo/radiation. We know there is more of a chance the cancer will return without the surgery, but in his case the surgery is likely to kill him. Rock and a hard place.

    have your doctor's explained why they are thinking no to surgery? Ours (at M D Anderson) were quite clear that surgery is the normal path with a better chance of a cure, but were very clear about their reasons for not recommending it for Bill (plus it was not entirely unexpected news).

    If your docs are not being clear on the reasons, then perhaps a second opinion at one of the centers that specializes in this cancer would be a good idea.

    Best wishes
    Freida
  • ritawaite13
    ritawaite13 Member Posts: 236
    #4
    Welcome Jane
    Hi and welcome to this board. You will find amazing people here who are so very helpful and knowledgeable about EC of all stages. I was a caregiver to my husband who was a stage IV at diagnosis so surgery was never an option but if yours is a stage III it IS an option and the only option for a cure. There are great facilities and doctors who specialize in this type of cancer and the treatments and surgery options. I'm sure William or his wife Loretta will sign on here shortly to give you great information about MIE (Minimally Invasive Esophogectomy)and the doctor they used in Pennsylvania. He is an 8 year survivor and there are many more 2+ year survivors who are still on here helping newcomers.
    Know that you both are in for the fight of your lives! This is a deadly cancer as I'm sure you've already been told. It's also the fastest growing type of cancer...it's growth outpacing others by 400% per year!! But it can be beaten! Stage III is not a good stage but it's not a death sentance either.
    You have come to the right place for help and support. Post often and ask many questions. Hugs to you,
    Rita
  • Unknown
    Unknown
    #5
    This comment has been removed by the Moderator
  • JaneO
    JaneO Member Posts: 40
    #6
    unknown said:

    This comment has been removed by the Moderator

    Thank you for that welcome!
    I did not expect it! I will try and give as much detail as I can. We live about an hour outside of Boston. He was first diagnosed at the local hospital. They are affiliated with Mass General so we went into Boston and met with an oncologist and a surgeon. We were told it was Stage III and that chemo would be the best option. He was able to do the IV chemo treatments locally. He had 6 rounds of EOX IV and took 1150 mg/day daily since August. When Jack was getting close to the end of his treatment last month, his local onc recommended we go meet with a surgeon at Lahey Clinic in Burlington, Mass. She questioned why were there before tx was over and she wouldn't recommend anything until another PET was done. His cancer had spread to a lymph node near his kidney. We went back to our local onc and he told us he still feels surgery would be beneficial. We had a catscan last month and we were told that the lymph node has shrunk "significantly". Jack is absolutely healthy otherwise and in good shape. He told us to find another surgeon. The Dr put together a packet of his labs/xrays for us to send/bring to other hospitals. We have contacted MD Anderson and they are asking for more info before they make an appt. Today I actually received a call back from Dana Farber in Boston and we have an appt with a Dr Peter Enzinger on the 16th. Jack's PET is scheduled on the 14th. Dana Farber and the other hospitals are all connected so they will be able to see the results. Oh and we looked through the reports and Mass General has it listed as T3N2M1...then it says Stage 4 after it. I know I was in total shock that daywhen they were telling us at Mass Gen. but honestly don't remember her telling us it was Stage 4. I really thought they said 3...anyway no one has ever talked about a Stage # since. I guess moving forward....I would like to know what we will need from an oncologist and what to expect. Thank you all again!
  • JReed
    JReed Member Posts: 428
    #7
    JaneO said:

    Thank you for that welcome!
    I did not expect it! I will try and give as much detail as I can. We live about an hour outside of Boston. He was first diagnosed at the local hospital. They are affiliated with Mass General so we went into Boston and met with an oncologist and a surgeon. We were told it was Stage III and that chemo would be the best option. He was able to do the IV chemo treatments locally. He had 6 rounds of EOX IV and took 1150 mg/day daily since August. When Jack was getting close to the end of his treatment last month, his local onc recommended we go meet with a surgeon at Lahey Clinic in Burlington, Mass. She questioned why were there before tx was over and she wouldn't recommend anything until another PET was done. His cancer had spread to a lymph node near his kidney. We went back to our local onc and he told us he still feels surgery would be beneficial. We had a catscan last month and we were told that the lymph node has shrunk "significantly". Jack is absolutely healthy otherwise and in good shape. He told us to find another surgeon. The Dr put together a packet of his labs/xrays for us to send/bring to other hospitals. We have contacted MD Anderson and they are asking for more info before they make an appt. Today I actually received a call back from Dana Farber in Boston and we have an appt with a Dr Peter Enzinger on the 16th. Jack's PET is scheduled on the 14th. Dana Farber and the other hospitals are all connected so they will be able to see the results. Oh and we looked through the reports and Mass General has it listed as T3N2M1...then it says Stage 4 after it. I know I was in total shock that daywhen they were telling us at Mass Gen. but honestly don't remember her telling us it was Stage 4. I really thought they said 3...anyway no one has ever talked about a Stage # since. I guess moving forward....I would like to know what we will need from an oncologist and what to expect. Thank you all again!

    Welcome JaneO
    Welcome to this wonderful site. We are newbies also - but be assured we have the best pioneers you'll ever meet on this site. My husband has not yet been told the stage of his EC, but I've had so many questions and EVERYONE on here has something to offer.

    If time affords, please look through as many of the posts and replies as you can - you will find much useful information and plenty of resources from the folks here.

    Like one of them told me the day I signed up here - sorry you found us, but glad you did. William and Loretta have sooooo much information and Paul, Chemosmoker, Daisylin, Angie, - well there are so many I can't remember everyone's name but everyone is so wonderful and helpful.

    I'm sorry I cannot be of any assistance to you in answering your question, but I do know you came to the right place. Welcome aboard!

    Judy & Don
  • JaneO
    JaneO Member Posts: 40
    #8
    JReed said:

    Welcome JaneO
    Welcome to this wonderful site. We are newbies also - but be assured we have the best pioneers you'll ever meet on this site. My husband has not yet been told the stage of his EC, but I've had so many questions and EVERYONE on here has something to offer.

    If time affords, please look through as many of the posts and replies as you can - you will find much useful information and plenty of resources from the folks here.

    Like one of them told me the day I signed up here - sorry you found us, but glad you did. William and Loretta have sooooo much information and Paul, Chemosmoker, Daisylin, Angie, - well there are so many I can't remember everyone's name but everyone is so wonderful and helpful.

    I'm sorry I cannot be of any assistance to you in answering your question, but I do know you came to the right place. Welcome aboard!

    Judy & Don

    Thanks Judy and Don!
    I am impressed with all the information everyone has. I was really getting to a point in Jack's treatment where I felt I needed to know more and understand more. The information I need is not found at a 15 min doctor's appointment, ya know?

    There are no supports groups close by or specific to EC, so meeting all of you and all the experience people have is a comfort. Everyday I learn something new from being on this site! I definately will read as many posts as I can!

    Jane
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
    JaneO said:

    Thanks Judy and Don!
    I am impressed with all the information everyone has. I was really getting to a point in Jack's treatment where I felt I needed to know more and understand more. The information I need is not found at a 15 min doctor's appointment, ya know?

    There are no supports groups close by or specific to EC, so meeting all of you and all the experience people have is a comfort. Everyday I learn something new from being on this site! I definately will read as many posts as I can!

    Jane

    Welcome
    Hi Jane and your husband..welcome to our family here. I was a caregiver for my dad. He passed from EC in March 2010. I still come on here daily to help people like you. I would also suggest getting a second, even a third opinion. My dad was not a surgical candidate due to his heart condition. Surgery to remove the tumor is the best bet. It all depends on what other health issues your husband has. Ask ask ask lots of questions. Do lots of research. Take notes, keep a journal. We are always here for you. Keep in touch.
    Tina in Va
  • TerryV
    TerryV Member Posts: 887
    #10
    Glad you found us, Judy!
    EC is a helluva place to be, but if you've got to be there, then this board is where you need to be for answers.

    I'm glad that William has had a chance to write. He's got the experience and the longevity to tell you the who (Dr. L), the where (Dr. L's hospital), the what (MIE) and the why (he's an 8+ year survivor). Please listen to what William says. He truly speaks from experience.

    Please know that we are here for you. For your questions, for your tears, for your frustrations, for your joyous moments - we are here for you. Please call on us without hesitation. We have walked the path you are about to step on.

    With much love & hugs!

    Terry
    Wife to Nick, age 48
    dx T3N1M0 05/19/11
    THE 09/08/11
    Clean Path 09/13/11
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • JaneO
    JaneO Member Posts: 40
    #12
    unknown said:

    This comment has been removed by the Moderator

    Preparing for Oncology Appt.
    Jack and I are going to meet Dr Enzinger from Dana Farber tomorrow. Thank you for all your support and information. I have just finished with all the questions I can think of to ask him. Now that I know Jack is really Stage IVa I think I am more prepared going in to this appointment. We had a PET done Wednesday 12/14/11 and we will find out tomorrow what progress, if any, the chemo treatments made. I have learned so much in the past couple weeks. I am grateful we have found you and everyone else on this site. It has been a God sent. Thanks everyone!
    Jane
  • TerryV
    TerryV Member Posts: 887
    #13
    duplicate
    durn forum...
  • jgwright
    jgwright Member Posts: 242
    #14
    JaneO said:

    Preparing for Oncology Appt.
    Jack and I are going to meet Dr Enzinger from Dana Farber tomorrow. Thank you for all your support and information. I have just finished with all the questions I can think of to ask him. Now that I know Jack is really Stage IVa I think I am more prepared going in to this appointment. We had a PET done Wednesday 12/14/11 and we will find out tomorrow what progress, if any, the chemo treatments made. I have learned so much in the past couple weeks. I am grateful we have found you and everyone else on this site. It has been a God sent. Thanks everyone!
    Jane

    More than PET scans needed.
    He needs MRI and Endoscopic ultrasound as well. My PET scan showed me a stage IV, but after all the good stuff was done, it was discovered that I'm Stage IIIb. Not wonderful, but way better than Stage IV.

    --Jerry
  • JaneO
    JaneO Member Posts: 40
    #15
    jgwright said:

    More than PET scans needed.
    He needs MRI and Endoscopic ultrasound as well. My PET scan showed me a stage IV, but after all the good stuff was done, it was discovered that I'm Stage IIIb. Not wonderful, but way better than Stage IV.

    --Jerry

    Thanks Jerry!
    Glad I checked in before I left! I will add that to the list of things to ask for. Is that common to request an MRI and an ultrasound? Did you have to ask or did your oncologist do that as a standard procedure? I thought the PET was the major one that told it all. Going from stage IV to III would be good news!Thanks again!
  • Unknown
    Unknown
    #16
    JaneO said:

    Thanks Jerry!
    Glad I checked in before I left! I will add that to the list of things to ask for. Is that common to request an MRI and an ultrasound? Did you have to ask or did your oncologist do that as a standard procedure? I thought the PET was the major one that told it all. Going from stage IV to III would be good news!Thanks again!

    This comment has been removed by the Moderator
  • MomhasStage4EC
    MomhasStage4EC Member Posts: 39
    #17
    There is no right and wrong
    There is no right and wrong here. I stressed and stressed about that so much I cant tell you. Constantly second guessing myself and the doctors. Surgery is a tough thing. Because once you go in there the chances of Cancer becoming more aggressive are higher. Im sure your doctor is thinking that and maybe not saying it outloud. My mother had a ton of doctors/Oncologists. We went with the one who could give it to us/me straight. Again there are no wrong and rights here every situation is different. GOD bless and best wishes to you both.
    -Mandy

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