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Urgent: EC IV M1b: anything we can do besides Chemo?

Lillyxu
Posts: 1
Joined: Aug 2012

Hello everyone,

My name is Lilly Xu and my father in China was recently dignosed EC IV M1b. He had a successful surgery 4 years ago because of EC.In the past few monthes, he complained about the belly ache and doctor gave him some medicine ( they thought it was just some minor digestive problem), but recent CT showes cancer found in lymph nodes and artery was surrounded by the lymphatic.I searched everything I can find and also found this very supportive forum. I hope in this family, we can be strong enough to face the treatment and strong enough to fight back to cancer.

My father is 70 years old,he has been always very careful about his food after his mother died of EC at her 60's. And he is so kind and in his whole life he never did any single bad thing, never lie, never drunk.But he is very sensitive about the word "cancer", our other family members are trying to hide the fact from him. We are afraid he is gonna collapse if he knew the truth,he is taking chinese medicine now.And he looks fine, still enjoy playing games in the club.

I booked airplane and will fly back next week,in my opinion he has to start Chemo as soon as possible. That's the only way to save him, but if he knew the truth and ended miserably in the hospital, will there another option: should we let him enjoy his rest of life without knowing the truth? And hope the magic chinese medicine can length his life and increase his life quality?

Everyone please help me out, any comments are welcome.thank you a lot!

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Welcome,Lily, to our group that no one wanted to join. I'm sorry to hear about your father. Here is my opinion. I think it is your father's life and your father's cancer. He has a right to know the whole story and all the choices and probable consequences before making a decision on how to proceed. Having you there with him will mean so much to him. I do not think you want to hear him say later, "Why did you not tell me?"
Wishing you and your father a wonderful time together in difficult circumstances.
Angie

BMGky
Posts: 666
Joined: May 2010

There are many on this site who have dealt with Stage IV. While I understand from your post that your father had surgery some 4 years ago, did he have chemo therapy and radiation prior to the surgery. EC is a very difficult disease and has difficult treatment.

You say he is sensitive to the word "cancer," so was he told his condition when he had his surgery? If so, how did he take it.

Do you know how he was initially staged and his initial EC level.

The reason I ask these questions is it will give some insight as to just how his situation evolved and how he is doing now. Hopefully, more of this information will help the other board members to give you some helpful suggestions. You should hear from others soon.

So sorry you and your family and your father are having to face this terrible disease. Best of luck to you. BMGky

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I'm so sorry to hear about your father. My name is Stephanie and my mother was also diagnosed with Stage IV esophageal cancer. Although she never had the surgery she did make a choice to go ahead and go through with chemotherapy. She is now starting to suffer from the long-term side effects that are cumulative with chemotherapy. She believes that the chemotherapy will keep her alive longer and that was the choice that she made for herself.

I know cancer is a very touchy subject especially for those who already gone through so much as your father has. However I also think that it's a very personal choice and I think it should be your father's to make. And then if you choose to tell him, whatever your father decides, all you can do as a family is support him 100% in his decision. Keep in mind at this stage chemo will not save him but may extend his life. Another thing to keep in mind is that it affects people differently. Some do very well, others don't. 

Some people choose not to have chemotherapy because they would prefer quality-of-life over quantity of life. It is a very difficult decision your family is facing and I feel for you and wish you all the very best. Enjoy your visit to China and your time with your father. . 

All the best,
Stephanie

jaycc
Posts: 131
Joined: Jul 2012

Lilly,
I'm so sorry to hear about your Dad, he sounds like a wonderful person. Glad to hear he looks fine and enjoying games at his club.

This is a wonderful site where you can talk with all types of EC cancer patients and caregivers.
Everyone is different and cancer treatment is an individual thing, that takes personal conversations to help with many decisions you will need to make in the times ahead.

I'll share with you some thoughts. I come from a cancer family as well. Mother died from cancer, and just last year my husband EC Stage IV also passed away.

As mentioned you will hear palliative care. Before everyone starts talking details of actions, the real important part of palliative care is to set goals. Based on the goals you setup the treatments and actions. When my mother was sick it was natural for all us kids to want as much time as possible. Suggest you do your homework have your opinion ready, but one of the most important things you will need to do, is listen. Listen to what your dad wants, this is his right. Listening is respectful. Once you have a sense of goals then go after the treatments , ask the doctors questions that best help you get him , the goals.
It hard to answer right away, should I take chemo, or not. But goals are a good conversation, without alot of medical terminology.

Some examples - I want to see the next grandchild born. I want to be at home, and in the hospital as little as possible. I want as many years as I can get, trying everything to fight off the cancer and get as many years as I can....

The word "cancer" very familiar conversation of the problem of using the word. It is not fair, and it stinks and you all have been through EC before. But it is here and it will be almost impossible not to use the word. But try to figure out the big fears of the word, and do what you can to help with those fears.

Chemo if you chose to go forward, you have a good point about starting soon. EC does grow fast, so in our case my husband chose chemo and we started right away. But very different from your dad, he did not have prior surgery.

Food and nutrition - some tricks, hydration as mentioned is very key, figure out several options of things he will drink, and get into the routine of counting the fluids per day. Make it fun where you can , do everything doesn't have to seem like a horrible task.

God's speed to you, on your flight, and keeping you, your Dad and the rest of your family in our prayers.

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