Esophageal cancer metastasis to brain

Pattyn~An honest reply 2 your ? from some who've been there!

 My dear Pattie:

 It is ironic that you should be writing about your best friend’s husband and his unfortunate diagnosis of Esophageal Cancer, Stage III.  If you click on my picture, you will have some insight as to who I am.  Thank you for posting something about yourself on your “about me” page.  I see that you have had surgery for Ovarian cancer, and that you are still here.  That’s wonderful.  I am a Stage IV Ovarian Cancer patient, myself and the Lord’s been good to me.  I was diagnosed in November of 2012, although my cancer is steadily advancing, I am still here by the grace of God. I signed on here to continue being able to correspond with patients who needed answers for Esophageal Cancer, Peritoneal Carcinomatosis and Ovarian Cancer. 

 Now I see that you are inquiring about your best friend’s husband.  My own husband, William Marshall, was diagnosed in November of 2002 with Stage III Esophageal Cancer, so I identify fully with all the concerns of your own bout with Ovarian cancer as well as with your best friend as the caregiver to her husband.

 My husband had pre-op chemo, an Ivor Lewis Minimally Invasive Esophagectomy on May 17, 2003 by Dr. James D. Luketich at the University of Pittsburgh Medical Center.   William is now into his 14^th year of survival.  He has regular checkups and so far is still in remission.  Once we asked the oncologist, “Should we say that my husband is cured?”  He said, “I’d prefer you say that you are in remission.”  And so that is what we say, because we know how insidious this cancer can be and that only God knows what is lurking inside that could resurface anytime.  Once a person becomes a member of the “cancer” family, all of life takes on new meaning and a new urgency to find something to help.

 Now Patty, because my husband and I have been monitoring this site for the last 14 years, I have read some stories of success and all too many of failure to battle the beast and beat it.  And some of those stories haunt you forever, and you never forget them.  One such story was from “Living Faith” (Deb) and Lindadanis (Linda).  They both pleaded with people to please think long and hard before considering whole brain radiation.  They said, “Never again!”  And so I will let you read the stories for yourself.  And rather than just giving you a link to follow, I will put the link and the remarks specifically of Linda and Deb.  If these people were still posting here, this is how they would answer your question about radiating the brain.  Personally, I will never do it, and with my present Stage IV there is no telling where the cancer might take up residence next. 

  Sad to say, metastasis to the brain is not uncommon for Esophageal Cancer patients.  My own best friend was diagnosed with brain cancer at age 55.  She was a registered nurse who worked in Oncology.  One Christmas she noticed that she was bumping into things.  Her peripheral vision was gone.  When she knew what her diagnosis was, she did not want any brain radiation, and she died peacefully in 3 short months.  We did so many things together, went shopping together, were members of the same church, and had much in common.  And for a long time after her death, anytime I went somewhere that we used to go together, I would get an eerie feeling of sadness, because the memories would come rolling in.  She was a Christian, as am I, and I know that I will meet her again one day, but the memories of our close friendship are still there.

 I know that this is heartbreaking for you even as a friend.  It saddens me to read your post because I identify with others who have walked this road.  Once we’ve become a member of the Cancer family, we enter into a world unknown to those outside that realm.  Our heart’s desire is to be a survivor our self, and to help anyone else we know that has heard those devastating words, “You have cancer!”  The remarks posted below from those who have “been there—done that” are honest answers.  They provide a better answer than I could ever give you.  These will not be easy to read, but will give you an insight into the experience of others who have had their loved one’s brain radiated.

   I regret that my remarks will not be something you wish to hear, but like “Deb” I feel obligated to answer the letters here in the most honest way I can.  Perhaps there are others with similar circumstances relative to EC and brain metastasis that can offset the sad posts you will read below.  May you continue to have a successful remission from your own Ovarian Cancer, and I pray that your friend and all her family will be fully informed so that they can make the best decisions.  As for me “Quality of life will take precedence over quantity of life”.  And that is a decision that I will definitely have to make going forward given the continued spread of my own cancer.  I will cross that bridge when I come to it, and it won’t be pleasant.  But my times are in the hands of the Lord, and I will trust Him to give me the wisdom and courage to know when to say “enough is enough!”

Most sincerely,

 Loretta Marshall

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 Posts listed below relate to brain radiation when EC has metastasized there.

 1.   http://csn.cancer.org/node/194564#comment-1079229

 When you click on the picture you will see Hope0310's entry telling us how her mom lost her battle.  The brain radiation was not effective. 

 When you click on Patrick’s picture, you will note he only posted one time back in 2011.  They were both answering Lindadanis’ question regarding anyone’s experience with brain radiation June 16, 2010. 

 2.  http://csn.cancer.org/node/217401#comment-1049588

  Please note this entry by “Shooting Star” posted on April 29, 2011. 

 Then note Deb’s answer.  She wrote under the name “Living Faith”.

 Here is what Deb wrote:

 3.      http://csn.cancer.org/comment/1049588#comment-1049588

 “brain mets

 My dad EC with mets to the liver, then lungs, and finally brain. He lived exactly 5 months. I'm not trying to take away any hope, but I vow not to ever sugar coat the news of our experience and what I have learned from others.

Brain mets is more evil than the devil himself! Brain mets stole my "dad" from me. The mets changed who is was, my hero, into an almost childlike paranoid person. It started with confusion and agitation to move on to headaches and full blown delirium. It was scary, heartbreaking and frustrating, for us, his family to witness. Can you only imagine what it must have felt like for him?

 I think you need to ask-What is the purpose of your his treatment? Is this giving him quality of life? There is no cure at stage of his disease. Is this prolonging his life or prolonging the dying process? I have witnessed pure hell and concluded there are things worse than death. My dad has been gone since Christmas time and the journey is still fresh in my mind.

 Please, Please Please. Before it gets too late. Say EVERYTHING you want to say to him now. Write down his thoughts, stories, and words too. You will not get a second chance, no do overs allowed with EC. Also make sure all of the family is on board with his plan of care now while he is able to express his wishes for treatment and after his passes away. That alone is a gift for a grief stricken family. Pray, then pray some more for peace, comfort, and strength.

 Blessings and prayers are sent your way. I'm so sorry another family has to experience this journey, but some beautiful touching moments can be experienced, along the way.

 Deb”

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 4.   http://csn.cancer.org/comment/1050228#comment-1050228

 Then note “Shooting Star’s” reply.  She was last on July 28, 2011. She is actually talking to my husband, WilliamWMarshall in her post of May 1, 2011.  But you will note that the reply above her name has been removed by the moderator.  We had been on this site from 2003 till September of 2012, when all our posts were removed. However, it is always my practice to keep a copy of everything I write in my Word file, and that’s why I remember this exchange between Shooting Star, Living Faith, Lindadanis and my husband William.  We corresponded with Linda at least 20 times and unfortunately none of our answers can be found here.  It seems that political correctness takes precedence over the mentioning of God’s name and quoting of scripture in an effort to help comfort those who are in the battle of their life, as well as those who have lost their battle.  Seems it’s okay for an agnostic and an atheist to discuss their “faith” openly but complain if a Christian expresses theirs!  And so all of my husband’s previous writings, answers, and research were removed in their entirety.  Many who wrote here that could have benefitted by our enormous amount of research were deprived.  Writings were in excess of 3,000.  We have never given out false information.  And it is heartbreaking to this day that so much valuable information was lost.  However, I am now writing under my own name about my own experience with cancer. 

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  Now, this is part of her Shooting Star’s letter addressed to my husband, William, which you can read in its entirety.  Unfortunately you cannot read my husband’s remarks to which she was responding.

 5.   http://csn.cancer.org/comment/1050228#comment-1050228

 “William, I truely appreciate…

 “…I am so scared he is not going to make it very long. After talking to Mom today, there were no improvements from Friday's radiation. My gut tells me it's not good. I don't think the radiation is a good idea, but the tumor behind his ear is large and causing problems with his eye. If it doesn't work he could lose sight. And he has to wait to start chemo after radiation. His cancer is extremely fast growing!!...”

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 Now this is Lindadanis’ remarks about brain radiation for her husband, Ed.  She is also responding to Shooting Star’s query?

 6.      http://csn.cancer.org/node/217401#comment-1049588

 “Whole brain radiation

 Dear Jen, although we have never spoken before, I have just sat down and read your letter about whole brain radiation. Let me first introduce myself, my name is Linda, my husband, Eddie, was diagnosed with stage four e/c back in October, 2009, right away he was stage four, cancer went to his stomach, pelvis and then eventually to his brain. He did seven months of aggressive chemo which was extremely hard on him as well as us, I have a 22 year old daughter also, who stayed home from college and helped me take care of her dad for almost 11 months.

  We had to stop chemo because Ed was then diagnosed with brain mets in June, 2009. He could not stand, his thinking was greatly impaired and his doctor stopped all chemo and suggested whole brain radiation. Looking back, I knew deep in my heart that this would change our worlds as well as Ed's world as he knew it and believe me Jen, it did. We immediately started brain radiation for four weeks, five days a week and right away we knew it was a mistake.

 He declined rapidly and eventually this brain met took his life on September 25, 2009. He had to sign every paper in the world to get this radiation as I'm sure your loved one did also, they tell you there is a very very slight change that it will resolve the cancer, in fact, we were told by the oncologist radiation doctor that it could give him a stroke, make him worse, etc., etc., but at the time we felt we had no other choice. My sister, who is a registered nurse for 25 years, told me no to have Eddie do radiation, but he wanted to do everything possible. Looking back, I do not think he was in any mental shape to even make that decision.

 I believe that this tumor was probably there right from the beginning of his diagnosis which was back nine months earlier. The original doctor never scanned his head so we don't know when that tumor began, but looking back to how Ed was behaving, I believe he had brain cancer right from the beginning. I wanted to warn you that these doctors are NOT upfront about whole brain radiation. Take it from me, I had to sit back and watch my poor husband go in there every day and decline every day to the point that after he finished radiation and they did a scan, the tumor GREW, not shrunk, at all. I never told Eddie that his tumor grew, I never could look in his eyes and tell him that everything he did was for nothing but deep down I believe he knew this. At the end of the months, my husband became bedridden, so mentally messed up, so weak and so sick. He did have one day two weeks later that we renewed our 25th wedding vows and had a small party.

 From that day on Jen, things were never the same. I wanted to write to you to let you know that whole brain radiation is a big risk, a very big risk and that from what the doctors told me, there was only a 20% chance of it working and it didn't. This cancer is a horrible cancer, especially when you are diagnosed with stage four.

 I do not write on here much anymore although I do read many stories. If I could go back and change one thing, it would be never to have started brain radiation. I wish we just would of let him with some dignity. At the end, he could barely speak to us and it was very difficult for myself as well as his daughter to watch this decline. I know that my husband was very sick and was probably never going to beat this cancer but the radiation took him earlier I believe.
If I ever can help you out, please contact me.
Linda”

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