Looking for survivors of Stage lV Esophageal Cancer

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Looking for survivors of Stage lV Esophageal Cancer

by Jak1975 on Tue Jul 09, 2013 10:53 AM

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My dad was recently diagnosed with stage lV Esophageal Cancer and I am desperately looking for hope. We have been told he is not a candidate for surgery because of the late stage, chemo and radiation are our only options (which he has not started yet). Hoping someone can answer a few questions for me: Anyone here that has been diagnosed with stage lV Esophageal Cancer and was still able to have surgery? If so, where? What should we expect once he starts treatments? Are there any stage lV survivors here? I am so glad to have found this forum, I can see this being a saving grace for my family and I!

RE: Looking for survivors of Stage lV Esophageal Cancer

by luluz1953 on Tue Jul 09, 2013 04:21 PM

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On Jul 09, 2013 10:53 AM Jak1975 wrote:

My dad was recently diagnosed with stage lV Esophageal Cancer and I am desperately looking for hope. We have been told he is not a candidate for surgery because of the late stage, chemo and radiation are our only options (which he has not started yet). Hoping someone can answer a few questions for me: Anyone here that has been diagnosed with stage lV Esophageal Cancer and was still able to have surgery? If so, where? What should we expect once he starts treatments? Are there any stage lV survivors here? I am so glad to have found this forum, I can see this being a saving grace for my family and I!

my husband, age 59 was diagnosed with stage 4, he has a spot on his liver that the pet scan picked up.

We are in month 3 of this, and this is what I can tell you so far.  We have amazing insurance so keep that in mind, we could go anywhere in the country to get his treatment so we had some options that others might not have. 

The first bit was just sorting it all out, trying to stay above the panic and fear and make good medical decisions that we could feel once made we could stick with.

We went to a center in Seattle that is pretty close to us, Seattle Cancer Care Alliance.  We also looked at M D Anderson in Huston Tx.  But both are top rated for EC and have a lot of experience with that type of cancer.  Because of were Geff's cancer is located radiation is not a option that our oncologist will consider.  He can also eat fine and has no trouble swollowing.  I am not sure we would opt for the surgery even if it was an option at this point.

What my biggest and best advice is this, just take the day as it comes.  Don't waste alot of time and energy on overthinking every little piece of this.  Laugh, do normal everyday things.  Do not let this cancer over take your entire lives.  He is sick, very very sick.  Make some decisions about his care and move along with it.

We have been married for 38 years, he is the other 1/2 of my sky, but we need to take this journey with as much grace and dignity as we have tried to live the rest of lives.  It is the hardest thing we have ever done, ever.  But this is the journey we are on.  Hope to hear from you again about what you are learning.  L

RE: Looking for survivors of Stage lV Esophageal Cancer

by frenfolly on Wed Jul 10, 2013 12:56 PM

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On Jul 09, 2013 10:53 AM Jak1975 wrote:

My dad was recently diagnosed with stage lV Esophageal Cancer and I am desperately looking for hope. We have been told he is not a candidate for surgery because of the late stage, chemo and radiation are our only options (which he has not started yet). Hoping someone can answer a few questions for me: Anyone here that has been diagnosed with stage lV Esophageal Cancer and was still able to have surgery? If so, where? What should we expect once he starts treatments? Are there any stage lV survivors here? I am so glad to have found this forum, I can see this being a saving grace for my family and I!

I, too, 68 yrs  have just been diagnosed with EC Stage IV, high grade (Grade 3).  Inoperable, so chemo/radiation to be organised next  week, although symptoms not yet bad.

Sadly, my beloved husband is shattered, and not yet really supportive. (He survived Bladder cancer 5 yrs ago).

Wld like to find there are stage IV survivers - oncologist reckons 12 mnths if treatment successful.  Yup, I'm scared.

RE: Looking for survivors of Stage lV Esophageal Cancer

by eternalife on Wed Jul 10, 2013 01:07 PM

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Hello all,

My husband was diagnosed with stage iv EC, Dec. 2011, still fighting, no surgery, just chemo and recent radiation. He had a scan this week and so we wait for the results.

Surgery was not offered initially, but since the distal sites have shown no evidence of disease( NED), the doctors have not ruled out surgery, although my husband is so tired of all the chemo, not sure he will go ahead with it.

About survivors: Let's not forget , the publications on EC, speak very rarely about the survivors.. there is some information, ... do not give up hope, it is not easy this road and often feels like a roller coaster ride... as caregivers cancer takes its toll, but you will find some comfort on this site , there are some genuine people that will have information and compassion to share their own journey,  please remember to spend time with your loved one, the time together is so precious. I have learned to take one day at a time and live in the moment... anxiety and worry gets no one anywhere... breathe...you will get through.

Take care , praying for a cure for all cancers,

Best 

Please continue to post and share your stories, there are so few stage iv EC patients posting right now...

RE: Looking for survivors of Stage lV Esophageal Cancer

by Ryoung6649 on Thu Jul 11, 2013 06:00 PM

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I pray for everyone with cancer but especially esophageal cancer.  My husband of 1 1/2 years passed away June 1, 2013 from esophageal cancer; I do believe the chemo/radiation keep him with me for a year.  

Please as others suggest, live your life as normally as possible and don't forget to look at sunset/sunrise and hold hands. 

God be with all the caregivers; it is not easy but know God has you in the palm of his hand and does not drop us.

RE: Looking for survivors of Stage lV Esophageal Cancer

by crystal777 on Fri Jul 12, 2013 05:52 PM

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get a consults from different  surgeons someone will do surgery i have spoke to stage 4 survivors on the phone

RE: Looking for survivors of Stage lV Esophageal Cancer

by Ryoung6649 on Thu Jul 18, 2013 03:13 PM

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My husbands life was prolonged to 18 months and I feel if he could have stopped smoking it w/h been longer Also try metabolic diet they say it beats cancer but he c/n do it either although we ate organic. It's hard but don't give up hope as Everyday new cures are found. God be with you my dear

RE: Looking for survivors of Stage lV Esophageal Cancer

by Ryoung6649 on Thu Jul 18, 2013 03:19 PM

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We thought my husband's tumor had shrunk enough to have surgery however Sloane Kettering did another scan and it showed there were mets in liver so S K w/n do surgery In retrospect I'm glad my husband didn't have the surgery as it is a very tough healing process. We originally went to Sloane because they have a good reputation for this type of surgery.

RE: Looking for survivors of Stage lV Esophageal Cancer

by janwes on Fri Jul 19, 2013 08:15 AM

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Just had to answer this post. Obviously everyone is different but I agree - very little out there about us survivors and we do exist! I was diagnosed with stage 4 adenocarcinoma of gastroesophageal junction with 2 mets in my liver in October 2008. My prognosis was very poor and I was not expected to live more than a few months. I was only offered palliative chemo - which was absolutely horrendous. I had a good result although the tumours never disappeared. Amazingly they have never progressed in the 5 years since. At one stage, radical surgery was considered but the decision was to leave well alone as I have done so remarkably well. Initially, I was disappointed about this but now I'm glad as my quality of life is pretty much as good as ever - not sure it would be after such drastic surgery and some oncologists think that surgery can itself can lead to cancer progression. The only symptom I have these days is fatigue - I think this dates back to effects of chemo. I attend for regular checks and MRI scans but so far so good. I am very careful about my health these days - I eat very well, have fresh juices daily and take loads of vitamins and supplements etc. I'm sure all these help me to feel well but can't totally explain why I've survived thus far. My doctors can't explain either - they talk about a genetic difference which seems feasible but all a bit vague at present. Its a little strange (in a good way!) to be in what sometimes feels like a club of one! So I would like to contact others like myself at the same time give a spark of hope to others going through that awful post diagnosis shock I remember so well.

RE: Looking for survivors of Stage lV Esophageal Cancer

by Faye123 on Fri Jul 19, 2013 10:50 PM

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On Jul 19, 2013 8:15 AM janwes wrote:

Just had to answer this post. Obviously everyone is different but I agree - very little out there about us survivors and we do exist! I was diagnosed with stage 4 adenocarcinoma of gastroesophageal junction with 2 mets in my liver in October 2008. My prognosis was very poor and I was not expected to live more than a few months. I was only offered palliative chemo - which was absolutely horrendous. I had a good result although the tumours never disappeared. Amazingly they have never progressed in the 5 years since. At one stage, radical surgery was considered but the decision was to leave well alone as I have done so remarkably well. Initially, I was disappointed about this but now I'm glad as my quality of life is pretty much as good as ever - not sure it would be after such drastic surgery and some oncologists think that surgery can itself can lead to cancer progression. The only symptom I have these days is fatigue - I think this dates back to effects of chemo. I attend for regular checks and MRI scans but so far so good. I am very careful about my health these days - I eat very well, have fresh juices daily and take loads of vitamins and supplements etc. I'm sure all these help me to feel well but can't totally explain why I've survived thus far. My doctors can't explain either - they talk about a genetic difference which seems feasible but all a bit vague at present. Its a little strange (in a good way!) to be in what sometimes feels like a club of one! So I would like to contact others like myself at the same time give a spark of hope to others going through that awful post diagnosis shock I remember so well.

You have given such hope today!!! Thank you from he bottom of my heart for taking time today to remind us that there is reason to hope with this terrible diagnosis! God Bless you. I pray that your good health continues!
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