It has been a long time

tinab1127
tinab1127 Member Posts: 18
in Esophageal Cancer #1
It has been a long time since I have been on here.... Between work, Raymond (my brother) DRs appt, his chemo, radiation, family, etc... It has been quite an exhausting few months though my brother is way more exhausted going through all of this I am sure. I think is was because he was so exhaused that on week 5 of radiation he was getting up off the table at the radiation place and he fell and hit their desk and had to be rushed to the ER where he had split his eye completely open (10 stitches), broke his thumb and fractured a place in his back. I really hated this for him... he has cerebral palsy and the thumb he broke was on his only good hand.

I do have a couple of questions and then I also have some news... One question I have is there anyone on here that has opted to not have the esophageal surgery or knows anyone that opted out? The reason I ask is of course my brother had decided from day 1 that he would never undergo the surgery. The DRs said this would be OK but that he would need to have two extra weeks of chemo and radiation. (which would mean he should receive 8 weeks) After six weeks they said he was done. We ask the DR about this and he said there was some confusion but the Raymond got the right amound of radiation and chemo that he was supposed too. If the DR's office had confusion just think how confused we are... Though my brother is not complaining not having to have anymore of either.

OK now for the good news... Went to the DR Friday and heard the news we wanted to hear "REMISSION".... That's right we are one happy family right now!!!!

I will say that I am a little nervous over the DRs "confusion" because to me two weeks difference is quite a confusion and I am also a little nervous about him opting not to have the surgery... That is why I would love to hear from anyone that decided not to have the surgery and or knows someone that decided not too and know how they are doing....

Though I a may be a little nervous over those couple of things will not take away the joy I see in my brother's eyes as he eats some of things hee couldn't for so long and the joy I hear in his voice when he tells people he is in "REMISSION". What am I talking about our whole family has that same joy for him!!!!

Oh my brother was diagnosed with esophageal cancer T3M1N0

TinaB

Comments

  • tinab1127
    tinab1127 Member Posts: 18
    #2
    T3N1M0

    T3N1M0
  • Unknown
    Unknown
    #3
    tinab1127 said:

    T3N1M0

    T3N1M0

    This comment has been removed by the Moderator
  • tinab1127
    tinab1127 Member Posts: 18
    #4
    unknown said:

    This comment has been removed by the Moderator

    Thank You Willliam for your
    Thank You Willliam for your response and prayers.

    I am not even sure first if I could convince him to have the surgery and second if he could still have the surgery. The doctors said in the beginning he would need to decide whether or not he was planning on having the surgery so they would know how much radiation and chemo to give him. He broke down and just cried stating he did not see any way he would go through surgery. At this point I asked the Doctor "What if he changes his mind? Would he still be able to have the surgery if he received the two extra weeks?" The doctors stated NO for there would be too much scarring for them to do surgery.

    After everything was finished and we went back to the doctor (Mind you he only received 6 weeks not 8 weeks) I asked why he didn't receive the two extra weeks he was to get for deciding to not have the surgery. Their answer was they had gotten confused but that Raymond got the right amount of radiation that he was supposed to get.

    I guess that is why I am a little apprehensive and confused. I really don't know how much radiation he did receive. I also wonder does he have to much scarring to have surgery and then think about Raymond, which I know in my heart he will never change his mind on having the surgery.

    Oh, you were asking about the seizures. Raymond did very well. No seizures at all. He actually did very well throughout the chemo and radiation. He had to use the feeding tube for about one week during the whole treatment. (Though he coughed and somewhat choked quite often he was determined to try to eat by mouth) I do think him not using the feeding tube resulted in him losing over 30lbs during the treatment for what he was eating was hardly enough to feed a bird.

    There is one thing I am not sure if I have said before. In 2008 Raymond was diagnosed with prostate cancer. (which they said has nothing to do with the esophageal cancer) When he had the surgery to remove his prostate a few hours after he was trying to walk to the restroom and had a seizure, fell and started pulling on his tubes. This caused major complications. It set back is recovery time considerably. It really drove him to his breaking point and he stated then he would never have another surgery.

    Now that this cancer has come up and the doctor is telling him that he is not sure that the surgery makes that much of a difference and that it is his choice, I honestly don't know what to say to him. I read discussions on here and I really wish he would have it but in Raymond's eyes "DOCTORS KNOW BEST"

    TinaB
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    tinab1127 said:

    Thank You Willliam for your
    Thank You Willliam for your response and prayers.

    I am not even sure first if I could convince him to have the surgery and second if he could still have the surgery. The doctors said in the beginning he would need to decide whether or not he was planning on having the surgery so they would know how much radiation and chemo to give him. He broke down and just cried stating he did not see any way he would go through surgery. At this point I asked the Doctor "What if he changes his mind? Would he still be able to have the surgery if he received the two extra weeks?" The doctors stated NO for there would be too much scarring for them to do surgery.

    After everything was finished and we went back to the doctor (Mind you he only received 6 weeks not 8 weeks) I asked why he didn't receive the two extra weeks he was to get for deciding to not have the surgery. Their answer was they had gotten confused but that Raymond got the right amount of radiation that he was supposed to get.

    I guess that is why I am a little apprehensive and confused. I really don't know how much radiation he did receive. I also wonder does he have to much scarring to have surgery and then think about Raymond, which I know in my heart he will never change his mind on having the surgery.

    Oh, you were asking about the seizures. Raymond did very well. No seizures at all. He actually did very well throughout the chemo and radiation. He had to use the feeding tube for about one week during the whole treatment. (Though he coughed and somewhat choked quite often he was determined to try to eat by mouth) I do think him not using the feeding tube resulted in him losing over 30lbs during the treatment for what he was eating was hardly enough to feed a bird.

    There is one thing I am not sure if I have said before. In 2008 Raymond was diagnosed with prostate cancer. (which they said has nothing to do with the esophageal cancer) When he had the surgery to remove his prostate a few hours after he was trying to walk to the restroom and had a seizure, fell and started pulling on his tubes. This caused major complications. It set back is recovery time considerably. It really drove him to his breaking point and he stated then he would never have another surgery.

    Now that this cancer has come up and the doctor is telling him that he is not sure that the surgery makes that much of a difference and that it is his choice, I honestly don't know what to say to him. I read discussions on here and I really wish he would have it but in Raymond's eyes "DOCTORS KNOW BEST"

    TinaB

    Welcome Back
    Hi Tinab and Raymond,
    So happy to see you back posting. Thank you for the recent update on Raymond. My whole thought on his situation is that it is his decision. This is his mind, body, and cancer. We can suggest all kinds of things for him to do, in the end, it is his choice. Hope he is healing from his fall. That sounded like he had quite a hard time. My dad was not able to have surgery, and within 16 months, 6 weeks of chemo and radiation, his ec went to his liver and he passed away March 9, 2010. Everyone is different. If this is what Raymond wants to do, I say give him your blessings. Thanks for coming back, keep us posted.
    Continue to pray for both of you.
    Tina in Va
  • tinab1127
    tinab1127 Member Posts: 18
    #6
    Tina Blondek said:

    Welcome Back
    Hi Tinab and Raymond,
    So happy to see you back posting. Thank you for the recent update on Raymond. My whole thought on his situation is that it is his decision. This is his mind, body, and cancer. We can suggest all kinds of things for him to do, in the end, it is his choice. Hope he is healing from his fall. That sounded like he had quite a hard time. My dad was not able to have surgery, and within 16 months, 6 weeks of chemo and radiation, his ec went to his liver and he passed away March 9, 2010. Everyone is different. If this is what Raymond wants to do, I say give him your blessings. Thanks for coming back, keep us posted.
    Continue to pray for both of you.
    Tina in Va

    Thank you Tina... I do know
    Thank you Tina... I do know it is his decision. From what I have read here and on the internet I really do wish that he would have the surgery. Then when the doctors tell him it is his decision and they are not sure that it really makes that big of a difference that from what they have seen after chemo and radiation the cancer is gone and they are not sure if the surgery is really necessary what do you do? My brother already doesn't want to have another surgery and then they let him know that they don't even really know if the surgery helps.. (per his own doctors words) What can you do?

    TinaB
  • skyhawk
    skyhawk Member Posts: 19
    #7
    tinab1127 said:

    Thank you Tina... I do know
    Thank you Tina... I do know it is his decision. From what I have read here and on the internet I really do wish that he would have the surgery. Then when the doctors tell him it is his decision and they are not sure that it really makes that big of a difference that from what they have seen after chemo and radiation the cancer is gone and they are not sure if the surgery is really necessary what do you do? My brother already doesn't want to have another surgery and then they let him know that they don't even really know if the surgery helps.. (per his own doctors words) What can you do?

    TinaB

    I can tell you when I had my
    I can tell you when I had my surgery at MD Anderson in Houston, my surgeon drew the stats of the last 500 pts that went through that facility that refused surgery. The 5 yr survival was a dismal 5%. Remember that these were pt's that qualified for surgery. He told me point blank that "surgery was making a big difference in survival and your only chance to a potential cure." That was the words right out of the surgeons mouth. Please consider the MIE if at all possible.

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