Feedback needed. Please, please

mlbrooks852
mlbrooks852 Member Posts: 67
edited March 2014 in Esophageal Cancer #1
Haven't posted in awhile cause we have been dealing with severe weakness, inability to maintain nutrition, etc. The last couple of days have been much better.

Dale's cancer was 1 cm and was removed with minimally invasive esophagectomy. 3out of 18 lymph nodes were positive so we knew we were looking at chemotherapy. Met with the oncologist today and she started the session by quoting us clinical trials with the 33percent survival rate at five years. She did not know the location of the tumor and said she would have to discuss with the surgeon, because if it was in the esophagus only, and not at the junction, then there were more clinical trials that indicated chemotherapy might not be beneficial. We were pretty shocked that she didn't seem very prepared for the meeting, and we already knew statistics.....we wanted to talk about specifics........Dale's cancer......not everybody else's.

We came home and scheduled an appointment with Cancer treatment center of America in Tulsa.

Did we do the right thing....

Are we just expecting too much?..

Comments

  • joecool
    joecool Member Posts: 3
    #2
    specifics
    I too was shocked to read the stats. I was diagnosed last January with stage 4 cancer. When I first met my radiolagist, I asked about the statistics I had read.(less than 3% surival rate after 5yrs.) She informed me that those numbers were outdated. The surival rate is 70% are still around after 3 years. I'm not sure if this is what you're looking for or not. The information was enough for me to follow through with an aggresive treatment of chemo and radiation. I just completed my first round of treatment and am looking forward my next pet scan to see how much progress has been made.
    Joe.
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    2nd Opinion
    Hi mlbrooks,
    We have missed you here. I agree with William, and thanks for the laughs William! It feels good to smile and laugh some days. You and Dale had to get a 2nd opinion. What a silly dr you had the first time! She was not even prepared to speak to you about "Dales" cancer! Red Flag # 1. Remember....Cancer is a disease, not a statistic, not a life sentence! Keep up the good work. The squeaky wheel gets the oil! Good luck in Tulsa. Let us know how you make out. No you are not expecting too much...this is Dale's life you are talking about!!
    Tina
  • mlbrooks852
    mlbrooks852 Member Posts: 67
    #5
    Tina Blondek said:

    2nd Opinion
    Hi mlbrooks,
    We have missed you here. I agree with William, and thanks for the laughs William! It feels good to smile and laugh some days. You and Dale had to get a 2nd opinion. What a silly dr you had the first time! She was not even prepared to speak to you about "Dales" cancer! Red Flag # 1. Remember....Cancer is a disease, not a statistic, not a life sentence! Keep up the good work. The squeaky wheel gets the oil! Good luck in Tulsa. Let us know how you make out. No you are not expecting too much...this is Dale's life you are talking about!!
    Tina

    Thanks
    Thanks everyone. We feel that we are doing the right thing and actually have more peace of mind today than for a very long time.

    Mary Lou
  • cjmac49
    cjmac49 Member Posts: 100
    #6
    mlbrooks852 said:

    Thanks
    Thanks everyone. We feel that we are doing the right thing and actually have more peace of mind today than for a very long time.

    Mary Lou

    You did the right thing - Keep going
    Mary Lou and Dale,

    Keep on looking until you find a group of doctors that you like and trust. If you're not happy fire them and go elsewhere.

    As anyone here can tell you we are individuals not statistics and some of us have been around a long time after treatments and surgery.

    Good luck in Tulsa.

    Jim
  • MOE58
    MOE58 Member Posts: 589 Member
    #7
    mlbrooks852 said:

    Thanks
    Thanks everyone. We feel that we are doing the right thing and actually have more peace of mind today than for a very long time.

    Mary Lou

    I LIVE IN TULSA CAN I HELP YOU
    Mary Lou,

    Hi my name is Lori, and I live in Tulsa, don't know the abouts of your living. What can I do to help with things. Jeff is a survivor of EC 1 year. I don't know much about Cancer Care of America, but there is some great Oncologist here in town. The group we used is not with them but with CANCER CARE ASSOCIATES, they have a website, if you want to go check it out. Jeff used Dr. Scott McHam, he is an awesome doctor and felt so great with him, he never once misguided us on any diagnosis or treatment and what he said everything was what he said would happen. I was quite impressed with him. Jeff was very very impressed with him, and this man never went to doctors, but he listened to everything he said and did it.

    Please let me know some more details so I can guide you with different informaiton. Restaurants, Motels, stores, etc

    Lori/aka Moe
  • mlbrooks852
    mlbrooks852 Member Posts: 67
    #8
    MOE58 said:

    I LIVE IN TULSA CAN I HELP YOU
    Mary Lou,

    Hi my name is Lori, and I live in Tulsa, don't know the abouts of your living. What can I do to help with things. Jeff is a survivor of EC 1 year. I don't know much about Cancer Care of America, but there is some great Oncologist here in town. The group we used is not with them but with CANCER CARE ASSOCIATES, they have a website, if you want to go check it out. Jeff used Dr. Scott McHam, he is an awesome doctor and felt so great with him, he never once misguided us on any diagnosis or treatment and what he said everything was what he said would happen. I was quite impressed with him. Jeff was very very impressed with him, and this man never went to doctors, but he listened to everything he said and did it.

    Please let me know some more details so I can guide you with different informaiton. Restaurants, Motels, stores, etc

    Lori/aka Moe

    So have you heard of Cancer
    So have you heard of Cancer Treatment Centers of America. We live in Kansas City and they are on TV with advertisements all the time. They are giving us a place to stay while we are down there

    Thanks
  • Unknown
    Unknown
    #9
    mlbrooks852 said:

    So have you heard of Cancer
    So have you heard of Cancer Treatment Centers of America. We live in Kansas City and they are on TV with advertisements all the time. They are giving us a place to stay while we are down there

    Thanks

    This comment has been removed by the Moderator
  • Burningstar
    Burningstar Member Posts: 2
    #10
    expecting too much?
    I am not sure how to get my husband hooked up with Cancer treatment center of America. We have no health insurance other than he is 100% service connected veteran. This allows him to be treated "free of charge" at any V.A facility, but no where else.
    I feel as if he and I are trapped into accepting treatment that might be less than compete.
    We are not being offered any clinical trials even though he is stage 4.
    I am feeling so helpless and frightened for both of us right now.
    I called CTCA and they advised there was no way to get him treated there unless V.A was willing to pay for it. (no they aren't)
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #11
    Burningstar said:

    expecting too much?
    I am not sure how to get my husband hooked up with Cancer treatment center of America. We have no health insurance other than he is 100% service connected veteran. This allows him to be treated "free of charge" at any V.A facility, but no where else.
    I feel as if he and I are trapped into accepting treatment that might be less than compete.
    We are not being offered any clinical trials even though he is stage 4.
    I am feeling so helpless and frightened for both of us right now.
    I called CTCA and they advised there was no way to get him treated there unless V.A was willing to pay for it. (no they aren't)

    Hi Burningstar
    So sorry to
    Hi Burningstar
    So sorry to hear you are having to go through this trouble. It always is the case with anyone in the military. They have to go to a V A facility. That is just not fair. Some of the V A hospitals do not specialize in this cancer. There should be some kind of a clause that allows vetrans to go elsewhere if need be. Have you tried contacting ACS in your area?
    They are always very helpful in a lot of different areas. Prayers will be being said for you and your husband. Keep in touch.
    Tina
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #12
    MOE58 said:

    I LIVE IN TULSA CAN I HELP YOU
    Mary Lou,

    Hi my name is Lori, and I live in Tulsa, don't know the abouts of your living. What can I do to help with things. Jeff is a survivor of EC 1 year. I don't know much about Cancer Care of America, but there is some great Oncologist here in town. The group we used is not with them but with CANCER CARE ASSOCIATES, they have a website, if you want to go check it out. Jeff used Dr. Scott McHam, he is an awesome doctor and felt so great with him, he never once misguided us on any diagnosis or treatment and what he said everything was what he said would happen. I was quite impressed with him. Jeff was very very impressed with him, and this man never went to doctors, but he listened to everything he said and did it.

    Please let me know some more details so I can guide you with different informaiton. Restaurants, Motels, stores, etc

    Lori/aka Moe

    You are Awsome!
    Hey Lori
    Just wanted to give you a pat on the back for being such a wonderful, helpful friend! That is great. I am hoping you can all hook up and get this worked out for the best!
    Tina
  • BlovedOne
    BlovedOne Member Posts: 1
    #13
    unknown said:

    This comment has been removed by the Moderator

    CTCA
    Having seen all the heartwarming commercials about CTCA in Tulsa we contacted them online and they informed us they didn't honor our insurance (Insure Oklahoma) which is an ins. plan for people who've lost their jobs due to our economy. It's wonderful sitting there in your comfy chair watching these commercials and to think there is actually some place that really understands and treats the patient first, disease last, but as usual it's always the fine lines to read between the sentences that get you in the end.
  • oriontj
    oriontj Member Posts: 375
    #14
    That sounds weird to me. My
    That sounds weird to me. My husband had stage IV only one lymph node involved and squamaous cancer. His oncologist said, we're going for a cure. No surgery would be done at all. He was in a clinical trial with Erbitux and we both feel it made a big difference. So far he is fine. Knowing that could change in a blink of an eye we're enjoying each day as it comes.

    A good teaching university might be a good second step.

    orion
  • Unknown
    Unknown
    #15
    Burningstar said:

    expecting too much?
    I am not sure how to get my husband hooked up with Cancer treatment center of America. We have no health insurance other than he is 100% service connected veteran. This allows him to be treated "free of charge" at any V.A facility, but no where else.
    I feel as if he and I are trapped into accepting treatment that might be less than compete.
    We are not being offered any clinical trials even though he is stage 4.
    I am feeling so helpless and frightened for both of us right now.
    I called CTCA and they advised there was no way to get him treated there unless V.A was willing to pay for it. (no they aren't)

    This comment has been removed by the Moderator
  • unclaw2002
    unclaw2002 Member Posts: 599
    #16
    oriontj said:

    That sounds weird to me. My
    That sounds weird to me. My husband had stage IV only one lymph node involved and squamaous cancer. His oncologist said, we're going for a cure. No surgery would be done at all. He was in a clinical trial with Erbitux and we both feel it made a big difference. So far he is fine. Knowing that could change in a blink of an eye we're enjoying each day as it comes.

    A good teaching university might be a good second step.

    orion

    If you can get in a clinical
    If you can get in a clinical trial with Erbitux go for it. Although there are potential side effects - the clinical trials have had promising results with 2 year survival rates going from @20% to north of 70%. It is already approved for treatment in certain cancers in the US but not yet for esophageal cancer but it is close. My understanding is if things go well this is the last clinical trial set before approval. I researched this drug and it is being touted as a breakthrough drug. Good luck.

    As for the insurance issue perhaps you could contact the Insurance Commissioner's office for Oklahoma a ask for assistance. They might be able to advocate a solution for you. It may be worth at least a try.

    Cindy

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