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Dad has esophageal cancer, spread to lymph nodes, kidneys, and liver

veggiejes's picture
veggiejes
Posts: 3
Joined: May 2013

Last week my dad called me and told me he had esophageal cancer and that it had spread to his lymph nodes, kidneys, and liver. He's 67 and a heavy smoker. Today he got a feeding tube and a chemo port, and tomorrow he is getting a stent. He says once he gains weight they are going to start chemo. Everything I've read about this sounds awful, but he's acting like he has nothing worse than a cold. I live on the other side of the country so I can't see how he's doing myself. My stepmom says they have not asked about his chances or how long he could expect to live because he would give up if it was bad. Everyone in my family is acting like everything is A-OK, and I feel like nobody is telling me the truth or they are all in denial themselves. I want to make sure I am home for my dad, but I have no idea what to realistically expect in terms of how much time he has left. Is there anyone that has experience with this that can give me an idea? Thank you.

Ladylacy
Posts: 474
Joined: Apr 2012

I'm sorry to hear about your Dad.  No one knows how much time anyone has.  My Aunt had EC and lived for almost 4 years.  She had chemo, radiation and surgery.  Hers spread to her lungs.  She underwent many radiation and chemo treatments and finally said enough is enough.

My husband had laryngeal cancer and then after undergoing radiation, chemo and surgery was NED for over a year.  Then they found a second primary at the cervical of his esophagus (which is a rare spot for cancer).  Said surgery would be too hard on him due to the previous surgery and radiation.  So he underwent another 35 rounds of radiation and 7 chemo.  Everything was good until January of this year when a PET/CT scan showed it had reoccurred and was much larger at the cervical of his esophagus and had spread to his right lung.  Surgery was out as was radiation.  He was told chemo would only prolong and could possibly hasten.  Our specialist ruled out a stent because he said the tumor would in all likelihood grow around it and cause problems.  My husband elected no more chemo.  The doctors wouldn't tell us how long he has because they said quite honestly they didn't know.  Right now he is doing good.  He does have a feeding tube but can swallow and eat soft foods.  He is 76 years old and has always been underweight 6'4" and his average weight has always been about 145-150.  So they were quite concerned when he was first diagnosed almost 3 years ago with laryngeal cancer.  He has maintained his weight always between 140-145 since all this started in July 2010.

The best advice I can give you is to talk with your father regularly and see him when possible.  Just remember that everyone reacts differently to this beast and to the treatments they are given.  No two people are alike.

Wishing the best to your family -- Sharon

 

 

JKGulliver
Posts: 82
Joined: Apr 2013

You don't give your Dad's staging, but as a non-medical person, it sounds like Stage 4 N1M1.  It is very true that oncologist cannot give the odds for a single individual.  All they can do is quote the statistics, based on a very large number of people, for the stage.  There is always a distribution of individuals around that number.  No one can say what individuals will be in what part of the distribution.  You can look up the survival percentages by stages by Googling "esophagal cancer stages". 

People cope in different ways.  And, if you look through these posts, you will see that there are many Stage 4 survivors, meaning they have passed 3-5 years post cancer, with their loved ones.  Staying in close contact with your Dad is important, and being there to do the tasks that will arise from the treatment is also important.  Your father can also sign a release for you to be able to speak directly with all the doctors on his team.  I recommend carrying a copy of this release with you at all times, because every single nurse and staff person, on every shift, in every facility will ask you anew for it.

Best of luck. 

veggiejes's picture
veggiejes
Posts: 3
Joined: May 2013

Thank you for your answers and advice. I've decided to fly home next week. Hopefully I can get more information directly from the doctor instead of it being filtered through my relatives.

Thanks again. Jessica

ernie694
Posts: 8
Joined: Apr 2013

Hi, it sounds like we are in similiar situations.  In Feb they found a tumor in my dad's brain. after surgery and it was removed it was determined it was a metastic tumor.  On March 31st they finally found the origin, and we were given the diagnosis of stage 4 esphogal cancer. His several Lymph node are involved also along with 2 additional small tumors on his frontal lobe.  My dad also lives 1200  miles away. For the first month after they found the intial tumor it was so difficult for my brother and I to determine what the real situation was. I am very fortunate that I have been able to spend most of my time down with them since March.  It was so difficult getting information 2nd hand.  I would suggest asking your dad to sign HIPPA forms for all his doctors.  (these will authorize Drs to speak to you about his diagnosis, treatment test results etc) Once those are on file, you will be able to speak directly with his help care providors.  While my dad has been told that his cancer is not curable. He is in denial, and admits this to us, and beleives he will "beat this".  While i know it is very important from him to have a positive attitude, it does make some parts of his diagonosis more difficult.  We dont talk about the "great big elephant in the room".  Dad has begun Chemo treatments.  I was the one who finally had to ask the Dr what the goals of Chemo were since it had become obvious after 3 appointments that my dad was not going to ask.  I try very hard to balance the questions I feel I need answers to versus what my dad doesnt want to hear.

I am sure many here would not agree with my approach but i had to admit that the statitics are not good and that my dad's time left any be very limited.  The changes in my dad already are very drastic.  He is not the same man he was a year ago.  I have made arrangements for both my daughters to travel down to visit my dad.  I have felt much better since these plans have been made.  I want to stay optimistic but I also need to be prepared for the worse.  I remind myself daily to appreciate each day i get to spend with dad now.  I would recommend you take a trip out and see your dad, even if you arent able to stay and hep them like i have been doing, you need to see him first hand.  See if you can plan a trip to visit when he has an appointment with his dr. That way you can meet the Dr and his nurse, this may make it easier for you to followup with them on your dad's prognosis.

Sorry you find yourself in this situation.  I know it is so hard

veggiejes's picture
veggiejes
Posts: 3
Joined: May 2013

Yes, this is very similar. My stepmom said they won't ask the doctor much because she believes he'll give up if he knows. What worries me is that the cancer is in so many places. My stepmom said they found more 'in his chest' whatever that means. She didn't say lungs so I'm not sure. I've never known anyone with cancer, so I am not familiar with it, but it seems to me impossible that this could go as well as my dad and family assure me it will. Maybe I'm being too pessimistic. I'm trying to be realistic.

Thanks for the advice on the HIPPA forms, I never would have known otherwise.

Sorry about your dad, and thanks for the sympathies. ~jessica

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