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After three gastroscopes and dilatations, and one biopsy, Dad and I have just found out from GI surgeon that biopsy indicates cancer. GI doc advised against cancer treatment given advanced age. Rather, he proposes to maintain Dad's quality of life by performing monthly scopes and dilatations to keep esophagus open. We have appointment with family doc tomorrow to get more advice, details and a second opinion. I tend to agree with GI surgeon and so does Dad. However, I don't know where to look for practical advice on what to expect with this type of cancer. Dad currently resides in a retirement home. I don't know at what point they will not be able to continue letting him live there. Our plan may be to have him move in with me and my family in the end stages (before hospice) because I don't currently work and can take care of him which will prevent him from having to go to a nursing home. Would a nursing home even take a terminal cancer patient? Doesn't matter, he is not going to one. But I just want to know if there is anyone out there whose loved one has suffered through untreated esophageal cancer and how difficult it was to look after them at home.

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Chris12, I am so sorry for your father's diagnosis. My father died of esophageal cancer, so I can share my family's experience with you, which may help. My dad was 76 when diagnosed and the tumor was so large by then that he couldn't swallow food, that's how it was found. My dad chose to have surgery but didn't want any treatment after that. He lived for another 2 years at home with my mom, but became emaciated and I think his quality of life was very poor (I was living in another state at the time so I didn't see him often). My mom was apparently able to manage him at home by herself, but there were a number of trips to the ER during those 2 years because my dad fainted from probably internal bleeding. Finally, about 2 weeks before he died, his doctor suggested they call hospice in. Knowing what I know now (and my 96 yr old mom is currently in hospice), I would have suggested they call in hospice much earlier for my father. It would have been a big help to my mother and she would not have felt so alone in taking care of him. You should probably consider that now for your father (it sounds like he would be eligible), even in his retirement home. Hospice will be a big help to you, with their visiting nurses, aides, social workers, chaplains, especially as your dad declines. And the hospice service will travel with your dad no matter when he goes to live. With hospice, you won't feel alone in managing your dad's declining health. I would say especially if you decide to have him live with you, get hospice involved at the outset because you never know how quickly someone can start to decline and it would be good to have the hospice folks there to help well before that time. I am so sorry for you and will be thinking of you. Please let us know how it goes. Hugs...
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Chris12, If dad has made friends and established a social circle where he lives now, do everything you can to keep him there. Hospice can be done anywhere, and this is his home now.
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Nursing homes have wonderful hospice programs. I'm guessing dad's ready for hospice. Ask his doc to have him evaluated. Really. At home...in a nursing home...hospice will allow you to treat his pain better.

I'm sorry. Love him to bits and pieces. He probably doesn't have much quality time.
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Motherissues2, thank you for your advice and support. I called around my area and there actually is a nursing/hospice company just down the street from me. I never knew that was what they did! We saw my dad's general physician today and I asked how we can tell at what stage the illness is at the moment. He said a CT scan would tell us if it has spread. Dad agreed to do this. Hopefully, we will get a quick appointment for that and wait for the results. After we have more information, we will know better what we are dealing with. I did get good advice from my dad's general physician today. He said a lot of people, upon receipt of this kind of news, go into overdrive, planning and looking too far into the future. So, I will just sit tight for now and wait and see. I will keep your advice in mind, however, as we go forward. My dad looked after Mum until the very end of her lung cancer 5 years ago and he only had provincially funded professional hospice help come in twice a day for 30 minutes max. each time for the last month. Like you, I now have hindsight and wish I had paid, out of my own pocket, for extra help for him. I don't know how he did it. I do know that he was utterly devoted to her and wouldn't agree to leave her side for his own respite, despite our pleas. Anyway, I don't want to do it alone. I have a family of my own to take care of, so I won't have a choice about getting in extra help. Thanks for your support.

Pamstegma, thank you also for your advice. Unfortunately, Dad has never liked where he is; he has only been there since a minor stroke in May, and has no "friends" there. He has only ever complained about it :( He loves my family and, at home here, he will have us all watching him and taking care of him. As long as I can get him to realize that he is not a "burden" to us all, I do think he will want to come here. Trouble is, my mother always harped about not ever being a burden to my brother and I do believe he still hears her voice to that effect...
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Chris, I like to get information on cancer from the CURE website. It publishes a free magazine, CURE, for those with cancer as well as their caregivers.

I could give you a link but the Admins delete URLs with dot com in them.

So Google CURE magazine, then esophageal cancer. I just did - got 115 hits, including a few on a documentary of people who've dealt with it.

You might also search online to see if there's a Gilda's Club near you. Both you and your father could attend meetings, get togethers, and therapy sessions (music, art, etc.). The club in my area has meetings for people with specific cancers, so he could meet others who are also battling esophageal cancer.

I am so sorry though to learn of this diagnosis, and hope that you and your father are able to find some good resources of support and information in this journey.
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Yes, the good thing about Hospice, in my experience, is that you can get them to come in very quickly once you make the decision to utilize their services. So you can definitely wait until you feel the time is right and you will know when that is I am sure.
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