some questions for my dad

angel6122
angel6122 Member Posts: 28
in Esophageal Cancer #1

    It's been about 7 months since my dad was DX with Esophageal cancer. I have posted before and got some wonderful advice and now need moe answers. So far my dad has had chemo every week for 5 weeks and around 28? rads. He also had a stent put in so he could eat as he lost about 70 pounds. The stent helped him eat and really didn't have any problems with it until it fell in his stomach but didn't know until he couldn't eat again, the Dr decided to remove it. He had his throat strectched which really helped. not he has to have it strectched once a week a little at a time so they don't tear it. He eats pretty good and is comfortable. I think he is stage 3. In the past my dad had a valve replacement of his heart. But otherwise healthy. My dad is 78 but seems so much younger than that.

My dad went to see a surgeon in Portland, Oregon who is suppose to be one of the best there and told my dad he would not do surgery unless he is 100% sure he will leave the table. He had him do some excersizes and walk a big flight of stairs which my dad didn't do well on (no wonder he had just finished his treatments) So he wanted him to see his cardilogist where he lives (5 hours away) to get an ok on his heart. That cardilogist ok'd him for surgery, so back my dad went to the surgeon. The surgeon told my dad that he will do the surgery on the 28th of feb. But wanted him to see a different cardiologist, b that they have there at there hospital the day before surgery. My dad still won't know for sure if they will do the surgery until the day before it is scheduled. What the surgeon told my dad that he will do a less invasive surgery where they go through the throat rather than the stomach, I think! The surgeon will not give my dad any facts or percentages. I just lost my dear sister and my dad is grieving at this point and I'm worried about his frame of mind going into surgery.

My dad had some questions I hope you all can help with, he would like to know: How much time the surgery will give him rather than not having the surgery. His thinking on this was, if it was only going to give him a couple of years and be in pain the whole time, because he knows how rough the recovery time is, vs. not having surgery and living around the same time. He said if it would give him say about 5 years he would do it but not if it would only give him a year or two. Can anyone tell me if he didn't do surgery could he possibly still live another few years?  As far as I know the pet scans came out Ok but will do another one in a couple of weeks just to make sure there is no spread of any cancers. Sorry to make this so long. I would appreciate any help you can give me.

Debbie

 
 

 

Comments

  • jim2011
    jim2011 Member Posts: 115
    #2
    your dad

    We have different motivations. I am in my mid 50's have 3 grandchildren and 2 of my own still living at home and going to secondary education.I went with the standard of care which is chemo/radiation, followed by surgery. Hard surgery? yes, but worth it for me as the surgeons were top of their fields and I wanted the cancer out of me. The pain for me is gone now and I have adapted to a new normal. Everyone is different and the outcome can-not be guaranteed. Do the homework on your medical team and have faith for a positive outcome.  I wish you the best!

    Jim

  • Rickyr1219
    Rickyr1219 Member Posts: 53
    #3
    I Hope to reach 78

    I'm sorta in the same boat as Jim.  I turned 56 in December and had my surgery in Nov.  There are 2 surgeries that most surgeons perform.  One is an MIE for Minimally Invasive Esophogectomy where they do the procedure laproscopically.  The other is Ivor Lewis Surgery which is what I had.  I have a scar on my abdomen from one side to the other that sorta follows my ribcage and makes kind of an upside down smiley face.  Another incision was made on my right back about 6-8 inches where they spread my ribs.  2 other smaller incision in same area where I had chest tubes installed for drainage.  They gave me a chemical induced stress test to make sure I was ok heart wise for the surgery and after 2 minutes they had to stop the test because my blood pressure dropped way too low.  They still did the surgery and I'm about 3 months post surgery and glad I had it done.  If I was 78 years old I'm not sure what I would do...  It really is a personal decision that your dad has to make for himself.  No one can tell whether we will live an extra day, week, month, or years.  Hope the best for you and your dad whatever decisions you make.

  • aheadshrinker
    aheadshrinker Member Posts: 1
    #4
    Your Dad

    It will be two years next Saturday the 16th since I had my esophagectomy at age 36. I tried ablation therapy and mucosal resection every two or three months for almost two years prior to the top gastro oncologist at Northwestern Memorial Hospital in downtown Chicago deciding that the stage 1 esophageal cancer was not responding to the treatment and decided to send me to the cardio-thoracic surgeon. Since I had been dealing with uncontrolable GERD since the age of 15, I had tried two previous Nissen Fundoplications with abdominal mesh repair for hiatal and ventral hernias. Due to my previous surgical attempts to slow the progression of the disease surgery was extremely difficult and I was sent to Pittsburgh to consult with the best surgeon for the job, Dr. James Luketich. The surgery did not go as planned and several life threatening complications arose that I'm still dealing with today. This past summer after having a ct scan to check the status of my abdomenal reconstruction after approximately 30 surgical procedures, the doctor told me that there was a mass in my prostate and on my bladder wall. Later test results showed that my lymphnodes were effected too. I recently finished six months of chemotherapy and radiation and on the 20th I go for all my tests to see where I'm at with regards to remission or further treatment.

    During the surgeries and even the first three months of chemo and radiation I was angry and had fight in me with a determination to beat this disease and watch my 9 year old son grow up and have children of his own. However, the last month has become increasing difficult to even move or find enjoyment in anything. The psychological effects that take place throughout the course of treatment are unimaginable. I would talk to your Dad and ask him what he wants to do with the rest of his life. Esophageal cancer can spread quickly, especially if it's adenocarcinoma. Once the lymph nodes become affected it will eventually make its way to the liver and then it's only a matter of months before the disease wins. If your Dad is a fighter, then I would make sure he has a lot of support from friends and family and go through with having the surgery. Despite spending approximately 75 percent of my time the last two years in the hospital or doctor's office I would still do it all over again. Tell your Dad to fight and not just hope for a few good months or a year, because even if the next four years of his life are filled with pain and suffering at times, the extra time you have with him has no price tag. 

  • MattieFields
    MattieFields Member Posts: 11
    #5
    YOUR DAD

    I'm so sorry that your Dad and you are having to go through this.  I guess it all depends on what the doctors/surgeons say.  There's always hope.  My husband had the major surgery and the doctors were aware of the pathology report a week after surgery but neglected to "share" this information with us.  We thought he was going home to get stronger but in fact he got worse and ultimately passed away.  I'm only replying to your comment because had we known about the pathology report being so BAD we would have done things much differently the last month of my husband's life.  Thoughts and prayers to you, your Dad and family.

  • MattieFields
    MattieFields Member Posts: 11
    #6
    YOUR DAD

    I'm so sorry that your Dad and you are having to go through this.  I guess it all depends on what the doctors/surgeons say.  There's always hope.  My husband had the major surgery and the doctors were aware of the pathology report a week after surgery but neglected to "share" this information with us.  We thought he was going home to get stronger but in fact he got worse and ultimately passed away.  I'm only replying to your comment because had we known about the pathology report being so BAD we would have done things much differently the last month of my husband's life.  Thoughts and prayers to you, your Dad and family.

  • MattieFields
    MattieFields Member Posts: 11
    #7
    YOUR DAD

    I'm so sorry that your Dad and you are having to go through this.  I guess it all depends on what the doctors/surgeons say.  There's always hope.  My husband had the major surgery and the doctors were aware of the pathology report a week after surgery but neglected to "share" this information with us.  We thought he was going home to get stronger but in fact he got worse and ultimately passed away.  I'm only replying to your comment because had we known about the pathology report being so BAD we would have done things much differently the last month of my husband's life.  If doctors do not give you pathology information please, please tell them you want it.  Thoughts and prayers to you, your Dad and family.

  • angel6122
    angel6122 Member Posts: 28
    #8
    jim2011 said:

    your dad

    We have different motivations. I am in my mid 50's have 3 grandchildren and 2 of my own still living at home and going to secondary education.I went with the standard of care which is chemo/radiation, followed by surgery. Hard surgery? yes, but worth it for me as the surgeons were top of their fields and I wanted the cancer out of me. The pain for me is gone now and I have adapted to a new normal. Everyone is different and the outcome can-not be guaranteed. Do the homework on your medical team and have faith for a positive outcome.  I wish you the best!

    Jim

    MY DAd

    Jim- Thank-you for your response. My dads motivation is to live. He will try anything but still has questions I myself have gone through a lot of different surgerys and know that the best way to find answers is through people who have gone through it rather than the doctors. Im glad the pain for you has subsided and hope you continure to improve. My dads Dr is suppose to be one of the best at OHSU in Portland, oregon Dr Hunter who also specializes in MIE.

    Thank-you- Debbie

  • angel6122
    angel6122 Member Posts: 28
    #9
    Rickyr1219 said:

    I Hope to reach 78

    I'm sorta in the same boat as Jim.  I turned 56 in December and had my surgery in Nov.  There are 2 surgeries that most surgeons perform.  One is an MIE for Minimally Invasive Esophogectomy where they do the procedure laproscopically.  The other is Ivor Lewis Surgery which is what I had.  I have a scar on my abdomen from one side to the other that sorta follows my ribcage and makes kind of an upside down smiley face.  Another incision was made on my right back about 6-8 inches where they spread my ribs.  2 other smaller incision in same area where I had chest tubes installed for drainage.  They gave me a chemical induced stress test to make sure I was ok heart wise for the surgery and after 2 minutes they had to stop the test because my blood pressure dropped way too low.  They still did the surgery and I'm about 3 months post surgery and glad I had it done.  If I was 78 years old I'm not sure what I would do...  It really is a personal decision that your dad has to make for himself.  No one can tell whether we will live an extra day, week, month, or years.  Hope the best for you and your dad whatever decisions you make.

    MY DAd

    Ricky-I also am worried because of his age and also his state of mind. But I know he is a very strong man and think he can get through this especially since he will have MIE. Sounds like you are doing OK for being 3 months post surgery. I wish the best for you and hope you continure to get well.

    Debbie

  • angel6122
    angel6122 Member Posts: 28
    #10
    aheadshrinker said:

    Your Dad

    It will be two years next Saturday the 16th since I had my esophagectomy at age 36. I tried ablation therapy and mucosal resection every two or three months for almost two years prior to the top gastro oncologist at Northwestern Memorial Hospital in downtown Chicago deciding that the stage 1 esophageal cancer was not responding to the treatment and decided to send me to the cardio-thoracic surgeon. Since I had been dealing with uncontrolable GERD since the age of 15, I had tried two previous Nissen Fundoplications with abdominal mesh repair for hiatal and ventral hernias. Due to my previous surgical attempts to slow the progression of the disease surgery was extremely difficult and I was sent to Pittsburgh to consult with the best surgeon for the job, Dr. James Luketich. The surgery did not go as planned and several life threatening complications arose that I'm still dealing with today. This past summer after having a ct scan to check the status of my abdomenal reconstruction after approximately 30 surgical procedures, the doctor told me that there was a mass in my prostate and on my bladder wall. Later test results showed that my lymphnodes were effected too. I recently finished six months of chemotherapy and radiation and on the 20th I go for all my tests to see where I'm at with regards to remission or further treatment.

    During the surgeries and even the first three months of chemo and radiation I was angry and had fight in me with a determination to beat this disease and watch my 9 year old son grow up and have children of his own. However, the last month has become increasing difficult to even move or find enjoyment in anything. The psychological effects that take place throughout the course of treatment are unimaginable. I would talk to your Dad and ask him what he wants to do with the rest of his life. Esophageal cancer can spread quickly, especially if it's adenocarcinoma. Once the lymph nodes become affected it will eventually make its way to the liver and then it's only a matter of months before the disease wins. If your Dad is a fighter, then I would make sure he has a lot of support from friends and family and go through with having the surgery. Despite spending approximately 75 percent of my time the last two years in the hospital or doctor's office I would still do it all over again. Tell your Dad to fight and not just hope for a few good months or a year, because even if the next four years of his life are filled with pain and suffering at times, the extra time you have with him has no price tag. 

    MY DAd

    Headshrinker- It makes me sad to see anyone go through this but when they are young is even sadder. Sounds like you have gone through a lot of surgerys and are a fighter!! Your words make me know he is doing the right thing. Your right, the extra time will be worth it and I want to read to him what you said. Im sorry you have gone through so much and hope you can be a survivor and have many years ahead of you.

    Another question my dad had was. and not sure if you know the answer but he wanted to know if he didn't have the surgery and did more rounds of chemo and kept having his throat stretched would that give him more time and also keep the cancer at bay? Im sure that if that were the case more people would do that instead of surgery, but he wanted to know. So if you could give me some kind of answer to tell him I would appreciate that.

    Warm hugs and thank-you- Debbie

     

     

  • angel6122
    angel6122 Member Posts: 28
    #11
    MattieFields said:

    YOUR DAD

    I'm so sorry that your Dad and you are having to go through this.  I guess it all depends on what the doctors/surgeons say.  There's always hope.  My husband had the major surgery and the doctors were aware of the pathology report a week after surgery but neglected to "share" this information with us.  We thought he was going home to get stronger but in fact he got worse and ultimately passed away.  I'm only replying to your comment because had we known about the pathology report being so BAD we would have done things much differently the last month of my husband's life.  If doctors do not give you pathology information please, please tell them you want it.  Thoughts and prayers to you, your Dad and family.

    Mattie- Im so very sorry

    Mattie- Im so very sorry about the passing of your dear husband! How kind of you to respond when you are dealing with such grief yourself. My dad and his wife are not good about asking questions and I have to always remind them to get copy's of every visit and test he has. My dad does not want me or my brother in the dr office I think he is afraid we will break down or something. wish I could go in and ask all the questions. I will call my dad tongiht and find out if they have a copy of the path report.

    Thoughts and prayers to you and everyone here and going through this.

    Hugs! Debbie

  • MattieFields
    MattieFields Member Posts: 11
    #12
    angel6122 said:

    Mattie- Im so very sorry

    Mattie- Im so very sorry about the passing of your dear husband! How kind of you to respond when you are dealing with such grief yourself. My dad and his wife are not good about asking questions and I have to always remind them to get copy's of every visit and test he has. My dad does not want me or my brother in the dr office I think he is afraid we will break down or something. wish I could go in and ask all the questions. I will call my dad tongiht and find out if they have a copy of the path report.

    Thoughts and prayers to you and everyone here and going through this.

    Hugs! Debbie

    YOUR DAD

    Thank you Debbie -- yes it's rough that's for sure and I'm not on this site very often but couldn't help but respond to your post.  If my husband and I had been told what the pathology report said a week after his surgery we would have approached his final time left so differently.  I'm very angry about that.  Someone at this hospital will be forced to at least answer this question.  Very big hospital.  I wish I had someone to tell me that during the month my husband was in the hospital getting through the surgery then complications (massive chyle leak/s).  Thoughts and prayers to you, Mattie

  • sandy1943
    sandy1943 Member Posts: 824
    #13
    Debbie, So sorry your dad is

    Debbie, So sorry your dad is having to fight the beast. The only cure for EC is surgery. I was 64 ,(stage 3 with 2 cancerous lymph nodes )when I had my Ivor Lewis surgery. That was five years ago and I'm cured and healthy today. No one can make the decisions for your dad, but it sounds like he is a fighter. We don't know how much time we have, but making every day count is what is important. It would be so good if your parents would allow you to go in for his consultations. My daughter went in with my husband and I. I was given so much info. it took extra ears. Tell them to ask for copies of all lab reports.

    So sorry about your sister. I'm sure this is hard on your dd and the rest of the family. Praying the cardiologists will give the go ahead for the surgery.

    Sandra

     

     

     

     

     

     

     

  • angel6122
    angel6122 Member Posts: 28
    #14
    sandy1943 said:

    Debbie, So sorry your dad is

    Debbie, So sorry your dad is having to fight the beast. The only cure for EC is surgery. I was 64 ,(stage 3 with 2 cancerous lymph nodes )when I had my Ivor Lewis surgery. That was five years ago and I'm cured and healthy today. No one can make the decisions for your dad, but it sounds like he is a fighter. We don't know how much time we have, but making every day count is what is important. It would be so good if your parents would allow you to go in for his consultations. My daughter went in with my husband and I. I was given so much info. it took extra ears. Tell them to ask for copies of all lab reports.

    So sorry about your sister. I'm sure this is hard on your dd and the rest of the family. Praying the cardiologists will give the go ahead for the surgery.

    Sandra

     

     

     

     

     

     

     

    MY DAd

    Sandy- Thank-you for your reply and for your condolances. I have not checked back in since I have been doing my own grieving for my sister.

    My dad's surgery was scheduled on Feb 28th but his surgeon requested my dad get another PET scan before he would do the surgery, it came back with live and lung mets.  The surgeon called my dad personally on the phone and told him, also said he could not do the surgery now. Im just shattered.  He went to see his onco today and said he would try a different chemo than what he had before. He will start on EOX in the next week or so. I have read that without surgery ESP. Cancer can not be cured and with my dad being stage 4 now, why would they put him through that and is there still a chance that he can be cured with more rounds of chemo?

    The family is still griving over myt sister and now Im so afraid that I will lose my dad soon too. He looks good right now, he has his throat stretched once a week so is able to eat and gained some of his wieght back. Other than him frame of mind right now he looks great. How much time do you think he may get?  I appreciate anything anyone can help me with PLEASE!

    Love and hugs to you all

     

     

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