"Another thought I would like to share"

lindadanis
lindadanis Member Posts: 235
in Esophageal Cancer #1
Asides from all my feelings, I would like to add this: This is just my opinion but I would like to share it to all the stage four's. Ed went through six months of chemo, which really did not do much and all along, right from the start, I asked his doctor to do a brains can because I believe he had brain mets right from the beginning. Ed declined to do the testing, therefore, we went straight into the aggresive chemo. After six months, after ed got dizzy and could not walk, I brought him up to the e/r and they did a brain scan, and yes, he had a golf size tumor on the back of his brain. We were sent to the radiologist, cancer doctor, who said he need two months, five days a week, of WHOLE BRAIN RADIATION, which I was totally against but they talked Ed into it. Into the middle of it, I would say about five weeks, he went from being somewhat able to walk and communicate, to not walking, not being able to talk, to not being in this planet anymore. He finished the radiation on this brain and then was sent home with "hospice".

It is my opinion that he never should of done whole brain radiation. The doctor did tell us upfront that it was only a 5% change of doing much but they did however, talk Eddie into it.

I think enough is enough and I feel that we need to be more demanding of these oncologist, that they put it in simple terms with their patients what they are up against and what are all the odds and how they are probably going to be after all the treatment is over.

This is just how I feel when you find out that you have terminal stage four cancer with prognosis of less than six months. I wish looking back, that Ed did not treatment and just live his life the way he was. I believe today, he and us would of be happier the last year of his life. His quality of life went straight downhill from the first day of treatment.

We all have to make our own decisions, I know this, but I just wanted to share my story.

Linda

Comments

  • sandy1943
    sandy1943 Member Posts: 824
    #2
    Linda, I remember what a bad
    Linda, I remember what a bad time it was for you all.I know if I have a reoccurance, I will shoot for quality life for the time I have left. The way I feel now, I don't know what it would benefit to have a little extra time, if it means I and my family would suffer for it. Of course my decision would be after a lot of soul searching,prayers, and looking for some knowledgeble people to help me with the decision.
    Sandra
  • Bailey1459daughter
    Bailey1459daughter Member Posts: 3
    #3
    Linda
    We will always be here for you!

    Sherri's daughter. Kelly
  • sandy1943
    sandy1943 Member Posts: 824
    #4
    Bailey1459daughter said:

    Linda
    We will always be here for you!

    Sherri's daughter. Kelly

    Hi Kelly, Glad you have
    Hi Kelly, Glad you have joined us-I know you have a lot you can share. You also have walked this road.
    Sandra
  • Bailey1459daughter
    Bailey1459daughter Member Posts: 3
    #5
    sandy1943 said:

    Hi Kelly, Glad you have
    Hi Kelly, Glad you have joined us-I know you have a lot you can share. You also have walked this road.
    Sandra

    Yes We All Have
    And I have so much to share, learned it all from my Mom!
  • Ginny_B
    Ginny_B Member Posts: 532
    #6
    My SIL has been battling
    My SIL has been battling cancer (mets) for 5 years. The last news came to us during my mom's first hospitalization after starting 5FU chemo - that news was that my SIL had mets to the brain. She underwent whole brain radiation and every tumor was zapped. One very small tumor was left, but scans show it continues to shrink. In her situation WBR saved her life. (Scans showed 9 lesions in the brain before WBR.)

    Each person will react differently. She suffers from neuropathy to both feet post WBR.
  • TerryV
    TerryV Member Posts: 887
    #7
    Different treatment experience / same end result
    I understand your pain & anger, Linda. I don't believe Nick had whole body scans following surgery. In retrospect, I wish I would have demanded whole body scans. Like your husband, my Nick was found to have a tumor on the back of his brain. Further investigation with an MRI revealed 2 other brain tumors, a "mist" of smaller tumors across the back of his skull and cancer in the spinal fluid.

    Nick's suggested treatment was 15 Whole Brain Radiations. He wanted to go for it and we had seen the scary side, but also had knowledge of the possible good. Leap of faith - we decided to go for it. Nick said he got hellacious headaches from the radiation, but they were beneficial - for him. He regained balance and his speech cleared from the slur brought on by the tumor. I smile now when I recall something he said about WBR. He couldn't wait to go to radiation because he "loved to smell the tumors burning". He said that the radiologist couldn't smell it, but he could. If that's what it took to get through this horrific treatment, so be it.

    Nick wasn't able to complete his 15th radiation. He had a seizure type event on the way in to the 15th treatment and ended up hospitalized for the last time. I lost him the next morning.

    I do have to agree with you though, Linda. When quality of life is negatively impacted by the treatment, you have to give extra thought to the "is it worth it?" question. It's imperative that doctors be realistic with their patients as well and tell them the toll that treatment can take. I was not thrilled when our radiologist told Nick that he had a good chance of being able to get his license back 6 months after completing the treatment. Our Oncologist had already told me that Nick had approximately 3 months. Sadly, both were wrong - Nick had 5 weeks. At least he didn't suffer long term, right?

    I'm starting to ramble and lose the topic. I guess I'm trying to say - everyone has different reactions to treatment. If you see your quality of life negatively impacted - take a moment, a day, a week to consider what is in YOUR best interest.

    Terry
    PROUD wife to Nick, age 49
    lost EC battle, June 19, 2012
  • Ginny_B
    Ginny_B Member Posts: 532
    #8
    TerryV said:

    Different treatment experience / same end result
    I understand your pain & anger, Linda. I don't believe Nick had whole body scans following surgery. In retrospect, I wish I would have demanded whole body scans. Like your husband, my Nick was found to have a tumor on the back of his brain. Further investigation with an MRI revealed 2 other brain tumors, a "mist" of smaller tumors across the back of his skull and cancer in the spinal fluid.

    Nick's suggested treatment was 15 Whole Brain Radiations. He wanted to go for it and we had seen the scary side, but also had knowledge of the possible good. Leap of faith - we decided to go for it. Nick said he got hellacious headaches from the radiation, but they were beneficial - for him. He regained balance and his speech cleared from the slur brought on by the tumor. I smile now when I recall something he said about WBR. He couldn't wait to go to radiation because he "loved to smell the tumors burning". He said that the radiologist couldn't smell it, but he could. If that's what it took to get through this horrific treatment, so be it.

    Nick wasn't able to complete his 15th radiation. He had a seizure type event on the way in to the 15th treatment and ended up hospitalized for the last time. I lost him the next morning.

    I do have to agree with you though, Linda. When quality of life is negatively impacted by the treatment, you have to give extra thought to the "is it worth it?" question. It's imperative that doctors be realistic with their patients as well and tell them the toll that treatment can take. I was not thrilled when our radiologist told Nick that he had a good chance of being able to get his license back 6 months after completing the treatment. Our Oncologist had already told me that Nick had approximately 3 months. Sadly, both were wrong - Nick had 5 weeks. At least he didn't suffer long term, right?

    I'm starting to ramble and lose the topic. I guess I'm trying to say - everyone has different reactions to treatment. If you see your quality of life negatively impacted - take a moment, a day, a week to consider what is in YOUR best interest.

    Terry
    PROUD wife to Nick, age 49
    lost EC battle, June 19, 2012

    Ramble?
    Terry, you NEVER ramble! ha ha
  • Donna70
    Donna70 Member Posts: 852 Member
    #9
    Ginny_B said:

    Ramble?
    Terry, you NEVER ramble! ha ha

    Linda, thank you
    Dear Linda,
    I remember well your struggles with Ed's fight with stupid EC. I think you are making very valid points from the terrible view of experience. Yes, sometimes you can do more chemo and extend your life with quality but as you said, you have to know where you stand. You felt Ed had mets to the brain and the drs did not do what they could have to find out if this was so. That would have made a big difference in what treatment he would choose, maybe palliative would have been his choice. I know if I have a recurrence I will be asking a lot of questions and if I cannot have some quality of life then I will opt for comfort and good time with my family. Sometimes, the patient has to be listened to when they state enough is enough. Unfortunately, sometimes they get convinced to go thru more rigorous treatment that does not help quality or even quantity of life. Thanks Linda for putting this up. Hoping that you and your daughter are having some good times now. take care,
    Donna70
  • jaycc
    jaycc Member Posts: 122
    #10
    Donna70 said:

    Linda, thank you
    Dear Linda,
    I remember well your struggles with Ed's fight with stupid EC. I think you are making very valid points from the terrible view of experience. Yes, sometimes you can do more chemo and extend your life with quality but as you said, you have to know where you stand. You felt Ed had mets to the brain and the drs did not do what they could have to find out if this was so. That would have made a big difference in what treatment he would choose, maybe palliative would have been his choice. I know if I have a recurrence I will be asking a lot of questions and if I cannot have some quality of life then I will opt for comfort and good time with my family. Sometimes, the patient has to be listened to when they state enough is enough. Unfortunately, sometimes they get convinced to go thru more rigorous treatment that does not help quality or even quantity of life. Thanks Linda for putting this up. Hoping that you and your daughter are having some good times now. take care,
    Donna70

    talking to others and haunts to lessons learned
    Linda,
    Thank you for sharing your story, I know its not easy. I'm on the other side , (for Stage IV) my husband was tagged as palliative, and I think that should of been more of a conversations of options and a decision made by him, not for him by others.

    Stage IV is tough, many decisions to make, quality of life, people you need to talk to, finding people in the same situation. Thank goodness for people on this board that are willing to share.

    Just my opinion, I put together a lists of my haunts and brought them to the center's social worker.Basically my own version of their feedback form, telling her that I hope these haunts would become the center's learnings.
  • Helena50
    Helena50 Member Posts: 20
    #11
    Need answers
    My husband had stage one cancer three years ago. He had surgery to remove the esophogus and had his stomach streched to be his esophogus. After the first surgery he had an infection and had a second sergury a "C" cut in his back to clear the infection. After that he had a leak and was on a feeding toob for several months. His sergon than place a stent to block the leak and it worked. Two years later he started experincing pain in his lower back after meals. The Doctors did not seem to be concerned with this pain. He began to eat less and less because he was afraid of the pain returning. He went to see his oncologist last year and after a CT scan they found a tumor on the outside of the stomach where the first sergury and where the stomach was attached to the esophogus. They also did an endoscopy and nothing showed up. My husband went through chemo and radiation and was again on a feeding toob. This past February all the chemo was done and he started to feel better and even put on some weight. Three months ago he started having the same back pain and had endoscopy and pet scan and nothing showed up, doctors just perscribed narcotics for the pain. Nothing worked and the pain keeps on getting worst. His Doctors do not know what it is, he has lost weight down to 100 lbs his origional weight was 164 when all this started. He is in the Hospital since Thursday because he was getting very weak and allucinating. I don't know where to turn at this time and looking for any suggestion from anyone. I have no faith in Doctors at this time. Help me and my husband.
  • jgwright
    jgwright Member Posts: 242
    #12
    Sad story
    I've had to fight with my docs to get the treatment and/or scans I want. I had a difficult time getting staged at first, because the oncologist said, "There's no point in staging you. You are incurable, but treatable, and all we can do is make you as comfortable as possible." (as we wait for you to die... (no, he didn't SAY that, but it was implied.))

    Well here it is almost a year later (and a year and a half since the first symptoms) and I'm still chugging along. As long as the chemo and radiation have somewhat of a positive effect, and they don't destroy my "quality of life", I will continue. But I know eventually that they'll stop working, and all I can do then, is hit the pain meds heavily, and live the best life I can.

    One of the "fun" things about this cancer is that you just CAN'T generalize. Everyone is different, responds to treatment differently, responds to the whole ball of wax differently. We are massively individual.

    10% of life is what happens to us, and 90% is how we respond.
    Make the good choices.

    --Jerry
  • lindadanis
    lindadanis Member Posts: 235
    #13
    Helena50 said:

    Need answers
    My husband had stage one cancer three years ago. He had surgery to remove the esophogus and had his stomach streched to be his esophogus. After the first surgery he had an infection and had a second sergury a "C" cut in his back to clear the infection. After that he had a leak and was on a feeding toob for several months. His sergon than place a stent to block the leak and it worked. Two years later he started experincing pain in his lower back after meals. The Doctors did not seem to be concerned with this pain. He began to eat less and less because he was afraid of the pain returning. He went to see his oncologist last year and after a CT scan they found a tumor on the outside of the stomach where the first sergury and where the stomach was attached to the esophogus. They also did an endoscopy and nothing showed up. My husband went through chemo and radiation and was again on a feeding toob. This past February all the chemo was done and he started to feel better and even put on some weight. Three months ago he started having the same back pain and had endoscopy and pet scan and nothing showed up, doctors just perscribed narcotics for the pain. Nothing worked and the pain keeps on getting worst. His Doctors do not know what it is, he has lost weight down to 100 lbs his origional weight was 164 when all this started. He is in the Hospital since Thursday because he was getting very weak and allucinating. I don't know where to turn at this time and looking for any suggestion from anyone. I have no faith in Doctors at this time. Help me and my husband.

    Keep fighting for answers
    I'm so sorry to hear of your story about your husband. The only thing I can say is keep fighting with the doctors to do scans, pet scans, etc., especially on his brain to see if the cancer has shown up somewhere else. he could be hallucinating from the pain drugs they put him on, I don't know. Have they done any testing since he has been in the hospital? Please let me know what is going on and maybe I can help you somehow.

    Linda

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