Looking for advice about my dad's case of esophageal cancer

Hello, I am new to this forum, looking for advice that I can pass on to my father who has EC.

My Dad started experiencing problems eating in August of 2008. He was diagnosed with esophageal cancer in November 2008. The tumor is located at the bottom of his esophagus - close to where it connects to the stomach. At that time the tumor was estimated to be large - 7 cm.

He started chemo on 12/4/08. At the end of January, 2009, the PET and CT scans looked great - no signs of cancer. However our oncologist decided to go ahead with radiation as extra insurance. He started radiation every day including 1 day of chem on 2/12/09 and completed the radiation and chemo on 3/26/09.

In May, 2009 he repeated the PET & CT scans and endoscopy and everything looked great. (There were two questionable lymph nodes in his neck however they were removed and they were not cancerous.)

However approximately three weeks ago, he started having difficulty eating and chest pain. We were already scheduled to have the PET & CT scans and endoscopy the first week of September. That is when it was discovered that the tumor was back - in the same place, smaller this time - 2-3 cm.

Now we have been told he could have more chemo but not much more radiation and the best bet would be the - surgery - esphagectomy.

So now he is torn. He kinda feels that the deck is stacked against him even if he gets the surgery, so why get it. He would rather enjoy his time at home, taking medicine for the pain, than spend a lot more time in the hospital, only to have it come back again, or in another place. We are basically trying to get feedback on peoples experiences in this same situation that either went through with the surgery or not.

The doctor said that there was no real area of statistics that you could refer to in regards to how many patients have the surgery, how many do not, and what the quality, and length of life is between the two. So I figured the next best thing was to try to find an internet forum, which led me here.


Thanks for your time and any advice or stories,

Chris

Hi Chris,

I am glad you came to the forum because this is a very active board and the people are just great (as you can probably see from past posts).  I don't know your Dad's age or condition, so I will just tell you my story.

I am a 5+ year survivor and the oncologist told me he feels I am now "cured".  In Jan. 2004, at 58 years of age, I was diagnosed as Stage 2B, received chemo/radiation concurrently for 8 weeks.  Rested 3 weeks and was sent off to surgery.  My doctors felt that even though my cancer was considered gone and dead, surgery should be performed to take out damaged esophagus and positively remove any chance of recurrence in that area.  It was a rough time and I went from May 25th surgery until Thanksgiving to feel decent.  My surgeon just recently told me she never expected me to survive the surgery because I was so weak.  It was a good thing I didn't know it because I was ignorant and ignorance is bliss.  I just plowed through the whole process determined I would get back on my feet again and lead a great "rest of my life".    I have side effects of the whole EC treatment, but I do have a "great" life and I am glad I made the effort.  In my case, I chose the surgery even though I knew it would be difficult and it was the right decision for me.

Best wishes to you and your family (dad especially) as you evaluate all of the posts you will be reading and trying to figure out what is right for him. I'll be praying for you all.

 

On 9/13/2009 Chris K wrote:

Hello, I am new to this forum, looking for advice that I can pass on to my father who has EC.

My Dad started experiencing problems eating in August of 2008. He was diagnosed with esophageal cancer in November 2008. The tumor is located at the bottom of his esophagus - close to where it connects to the stomach. At that time the tumor was estimated to be large - 7 cm.

He started chemo on 12/4/08. At the end of January, 2009, the PET and CT scans looked great - no signs of cancer. However our oncologist decided to go ahead with radiation as extra insurance. He started radiation every day including 1 day of chem on 2/12/09 and completed the radiation and chemo on 3/26/09.

In May, 2009 he repeated the PET & CT scans and endoscopy and everything looked great. (There were two questionable lymph nodes in his neck however they were removed and they were not cancerous.)

However approximately three weeks ago, he started having difficulty eating and chest pain. We were already scheduled to have the PET & CT scans and endoscopy the first week of September. That is when it was discovered that the tumor was back - in the same place, smaller this time - 2-3 cm.

Now we have been told he could have more chemo but not much more radiation and the best bet would be the - surgery - esphagectomy.

So now he is torn. He kinda feels that the deck is stacked against him even if he gets the surgery, so why get it. He would rather enjoy his time at home, taking medicine for the pain, than spend a lot more time in the hospital, only to have it come back again, or in another place. We are basically trying to get feedback on peoples experiences in this same situation that either went through with the surgery or not.

The doctor said that there was no real area of statistics that you could refer to in regards to how many patients have the surgery, how many do not, and what the quality, and length of life is between the two. So I figured the next best thing was to try to find an internet forum, which led me here.


Thanks for your time and any advice or stories,

Chris

Chris I know it is a hard dision to make but I believe we should do every thing we can to be able to live and enjoy life as long as we can. I was 52 dx t3 had radiation, chemo and surgery and let me tell you with certinty It is worth it. I am 1 yr post op and am enjoying life very much. I have forgotten the discomfort of surgery and refuse to look back.  My prayers are with you and your dad  God bless

 

On 9/13/2009 Chris K wrote:

Hello, I am new to this forum, looking for advice that I can pass on to my father who has EC.

My Dad started experiencing problems eating in August of 2008. He was diagnosed with esophageal cancer in November 2008. The tumor is located at the bottom of his esophagus - close to where it connects to the stomach. At that time the tumor was estimated to be large - 7 cm.

He started chemo on 12/4/08. At the end of January, 2009, the PET and CT scans looked great - no signs of cancer. However our oncologist decided to go ahead with radiation as extra insurance. He started radiation every day including 1 day of chem on 2/12/09 and completed the radiation and chemo on 3/26/09.

In May, 2009 he repeated the PET & CT scans and endoscopy and everything looked great. (There were two questionable lymph nodes in his neck however they were removed and they were not cancerous.)

However approximately three weeks ago, he started having difficulty eating and chest pain. We were already scheduled to have the PET & CT scans and endoscopy the first week of September. That is when it was discovered that the tumor was back - in the same place, smaller this time - 2-3 cm.

Now we have been told he could have more chemo but not much more radiation and the best bet would be the - surgery - esphagectomy.

So now he is torn. He kinda feels that the deck is stacked against him even if he gets the surgery, so why get it. He would rather enjoy his time at home, taking medicine for the pain, than spend a lot more time in the hospital, only to have it come back again, or in another place. We are basically trying to get feedback on peoples experiences in this same situation that either went through with the surgery or not.

The doctor said that there was no real area of statistics that you could refer to in regards to how many patients have the surgery, how many do not, and what the quality, and length of life is between the two. So I figured the next best thing was to try to find an internet forum, which led me here.


Thanks for your time and any advice or stories,

Chris

Hi Chris,

Welcome to the EC board.  My husband Joe has Stage 3 EC cancer.  He was operated on first on 3/17/08 and then followed up with aggressive chemo and no radiation.  So far his scans have been clear and he is scheduled for another CT scan in Nov. which will make 20 months since the surgery.

I also wanted to know how old your Dad is?  Another question I had is did he ever intend to have surgery before the recurrence or was he only planning to have the chemo and radiation? 

In my husband's experience, and I know everyone's is different, the surgery was bad and he had a lot of rib pain but the chemo was a lot worse.   My husband's tumor was about 2 cm which is probably why he didn't need radiation and his was also at the junction where the esophagus meets the stomach.

In my opinion, it seems like your Dad has come so far and the surgery would definitely remove the tumor (of course, recurrence is always there with cancer).  I know if it were my Dad and he was physically able to go through with the surgery and he is able to get a highly-qualified surgeon who has performed such surgeries, I would try to persuade him to have the surgery.  However the ultimate choice is his.

Maria

 

 

Chris I had the surgery on 2 Jan 2008 after 206hrs of chemo and radiation together and my surgery was nothing compared to the chemo/rad. I was 61yrs.old when operated on with no medical problems and had worked out my entire life and was walking 4miles twice a day everyday prior to my surgery. I am now 63yrs. old and at the time of my diagnoses my tumor was 7cm located at the junction and after chemo/rad it was gone at stage 0 but I new the odds of reoccurance were hig with this cancer and elected to go for the surgery. I went through surgery without one problem and never had pain which  totally baffled all my Doctors and last week had an appointment with my radiation oncology Doctor, who just shook his head and stated," I can not believe how great you look and how well you are."  He was the Doctor that originally told me that I could have a reoccurance without surgery. I will be two years this Jan since surgery and will never regret doing it, for I know where I would be today without it. Please talk with your Dad but it will be his and only his decision. I wish him the best and to you also. God Bless You Both.  Phil A.

I forgot to add that my husband was 55 years old at the time of surgery and worked construction for years and was also physically fit.  He's still a little thin but the weight is starting to stick now and he looks great!

Maria

Hi Chris, iam 54 yrs old. dx in mar 2009 with the same cancer as your dad and same posn except mine is 8 cm long ie T3. had chemo/radiation for about 2 1/2 months. had surgery on 7/7 left hospital on 7/15 came home 7/18 and back to work on 7/20. going to see my surgeon on this wed for a 2 months check up. i am leading an almost normal life even with my eating.

from my understanding, for a cure for EC, you almost need to have the surgery. even then it is not 100% but it greatly increase the chance that the cancer is taken out. it is premature for your dad to conclude " why bother". there are many example on this board of survivors for this cancer and i think as medicine improves the survival rate goes up but the evidence lags very far behind the actual study.

i encourage your to counsel your dad for surgery. find a good surgeon and a good oncologist and dont give up hope. life is worth fighting and living. be strong.

ask any other questions you have as there are great people on this board who will give you honest insights into their experience.

god bless

Chris

Of course this is your Dad's decision, along with a surgeon, but if he is having a recurrence and it can be removed, I would probably have it out before it has a chance to spread further. Many people here will admit the surgery is difficult, but they have not had major problems (although a few have). Your best shot would be to find a very experienced surgeon at a facility where they do a lot of these surgeries. The post surgical nursing care is also very important and the places that do more of them tend to have nursing staffs who are experienced at giving the kind of care needed for the best recovery.

Hi Chris.  I join most everyone here who believes you should do what is best for YOU. But most of us here, have opted to be agressive. My husband included. He was dx'd stage 3 in July 08, had his chemo and radiation and then surgery in November. He had a really tough time but today, he says he would do it all over again. He is cancer free and for that he is grateful. Life is a little different but he can still enjoy many of the basics.So, for him, surgery was the only way to fight it. He says he can't imagine just letting the cancer do what it wants. 

So, good luck with your family and this journey. We are all here to listen to all the good and the bad. We just keep blogging and it helps us.

First off, on behalf of myself and my parents I just want to thank all of you for your responses and support. My parents didn't even know what a forum was, so they were a bit surprised when I suggested this. But we are all so thankful for all of your stories and advice. I wanted to clarify a bit that my Dad's outlook is not as grim as I may have made it sound, but more about just wanting to enjoy his time the best way possible. All of your stories mean so much to all of us and I will keep you posted.