End Stage Esophageal Cancer.

5 Posts | Page(s): 1 

End Stage Esophageal Cancer.

by Adam777 on Mon Jun 04, 2007 12:00 AM

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Hi all, my dad is 67 and was diagnosed with stage IV esophageal cancer back in Feb 07.  He has metastases to lungs and now brain also.  After radio to the main tumour in April, and now stereotactic radio to his brain, he sleeps nearly 80% of the time.  He is still managing to eat simple foods however (choc ices, soft wafers, biscuits, soup, e-sure etc....), and with good admin of medicine is managing to stay generally pain free.  However he is not willing to share any detailed prognosis with us, his family.  We would very much like to hear from anyone who has experienced a relative with this stage of esophageal cancer, specifically with questions such as:

Q) What happens in the final couple of months, (symptoms wise)?

Q) What are the signs that he might be coming to the end of his life?

Q) When should we consider a hospice?

 I have looked for similar info online but found very little.

Thanks for listening.

 

RE: End Stage Esophageal Cancer.

by 2cats on Mon Jun 04, 2007 12:00 AM

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Does he have any of you listed with the doc's office as people they can release info to?  Are any of you able to go to the doc with him?

My mom has her children and a couple other people listed on her forms. We can call at any time and ask questions. They will release info to us. You might see if that is an option. You could also call hospice and ask them some of your questions. They should be able to tell you what to watch for. I know when my aunt was dying (not from EC) they did a great job preparing the family, letting everyone know what stages she would probably go through, etc.

I dont know that you'll get a lot of info about the end stages on this board. Most people dont come back after their loved one has passed.  You might look up Cathys EC cafe. Its a site where people post blog type things about their experience with EC.

Wishing your family the best!

RE: End Stage Esophageal Cancer.

by Adam777 on Tue Jun 05, 2007 12:00 AM

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Thanks for your post 2Cats.

I did ring both the Radiologist and Oncologists secretarys, informing them that I/we would like to be kept up to date with Dad's prognosis etc..but unless he gives them specific instructions to be able to do so, they are boung by patient confidentiality... I spoke to my father regarding this, and he  is being very stubborn about it.  We have told him that it is only in his best interests to be kept right up to date on his situation, but he thinks it best to handle it his way.  I think he is worried that we might put him in a hospice, whilst he wants to stay at home.

All the best.

 

 

RE: End Stage Esophageal Cancer.

by Debbyw67 on Tue Jun 12, 2007 12:00 AM

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Adam,

I highly recommend Cathy's EC Cafe's listserv.  They are very active and are a good mix of survivors, caregivers and also caregiver's whose loved ones have already passed away from EC.  They can probably give you some very good honest answers to your questions.  It sounds like your dad is trying to protect you from the brutality of this disease.  I would also highly recommend two books "Final Gifts" and "May I walk you home" which both deal very honestly with helping a loved one through the dying process.  I just started reading them this week but find them very beneficial.  My father also has Stage IV with mets to liver, lymph node and lungs.  His last series of chemo failed miserably and he will begin a new series with different chemo tomorrow but his onc has told him there is only a 15% chance of this working since the first ones didn't.

I wish you and your father the best of luck in your battle with this awful disease.

Debby 

 

RE: End Stage Esophageal Cancer.

by Cmt928 on Thu Jun 14, 2007 12:00 AM

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I am so sorry for your Dad, you and your family that this horrible disease is in your lives.  My Dad passed away in May of 2007 after the most valiant fight I ever saw.  Even his doctors were amazed.  He was diagnosed in February of 2003.  He had radical surgery, and spent a month in the hospital due to breathing complications.  After the surgery, he underwent chemo and radiation as the cancer had spread into the lymph.  By Christmas of 2003, we celebrated greatly as the doctors told us he was cancer free.  But, in 2004, it came back with a vengeance.  He continued to fight and receive chemo and radiation.  By November of 2004 we saw another doctor for a second opinion.  That doctor told us he only had another 6 months, which would put us to May of 2005.  Stubborn Irishman that he was, he told that doctor he wouldn't go down without a fight, and he didn't.  He continued fighting, receiving chemo and radiation, if only to stop the progression of the disease, as we knew at that point he could not be cured.  He was in and out of the hospital with breathing problems, and right before Christmas, 2005, we knew he was weakening.  After that stay in the hospital, we started getting visiting nurses at home, just to check is blood pressure and his general state.  One nurse was almost in tears and urged us to get him hospice care.  We arranged to have hospice care in the home so he could be in his own house and with his family.  It was a lot for my mom to handle, but I went there often to help her and to spend time with him.  We lost him in May, 2006, one full year after what the doctors expected.  So, my first piece of advice to you is spend as much time with him as possible, tell him often that you love him, and if he is uncomfortable talking about his condition, let it go.  He needs to get it straight in his mind before he can talk about it.  I was totally involved in the doctor's visits, etc., and I was there for my Dad every step of the way.  I was holding his hand when he passed.  The best time to consider hospice care is when you can see that the doctors and hospitals really cannot do anything for him.  As long as he is still aware and can make his own decisions, it is important for him to say it is time for hospice.  You should also have him appoint someone as his health care proxy agent in case he is unable to make decisions.  Someone who knows what he would want in certain situations.  It is very hard to know "end of life" symptoms, except, they basically stop eating and drinking, they sleep all the time and are very hard to wake up, and when they are awake, they are somewhat withdrawn, or they get a burst of sudden energy and talk a lot, and at the very end, the breathing gets quite irregular.  I know this is a lot to think about, and it is nothing pleasant to think about.  My heart truly goes out to you.  I honestly feel your pain.  Your dad, you and your whole family will be in my prayers.  Try to stay strong, but do cry when you need to.  God Bless.
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