Hello, needing a place of hope.

MarinaDN

Hello, my father was recently diagnosed with stage 3 cancer of the esophagus. I am so scared that he will not make it throughout this and everything I read on the internet is all bad news. I am hoping that I have come to a place where I will be able to get some information and positive feedback that will help us through this terrible time in our lives. My dad, (Al) is 67 years old and the strongest, healthiest man I know. He has 11 grandchildren (5 of which are mine). He has a strong family unit, and we are all heartbroken right now. I can't remember a single day in my life that he has been sick, with the exception of a small cold a few times. It seems so unreal that this is all happening. My mom is having a hard time as well, and is not taking the positive approach to healing my dad that she needs to. Both of them have become very depressed and are feeling hopeless. After seeing a gastro Dr. for a persistent sore throat we were told about the cancerous tumor. That Dr. then sent him to Miami University last week to see a surgeon who ordered a bunch of tests that eventually let us to at least two 3 week rounds of chemo (to shrink the tumor) before they can possibly do surgery. In the mean time they saw "something" on his PET scan in the pelvic region that has them wanting him to do a MRI on Tuesday. Any clue as to what that could mean? The doctor said that there are so many reasons something could show up and not to worry, but that is much easier for him to say than for us to do. I do not know yet what else the tumor has invaded though the doctor did use the word localized, which sounded good. It has all been coming at us so fas, that I feel like I have a ton of information and nothing at the same time. Well, I feel better just having got it out there, so thank you to any who have read my post. Any information you can pass along that will help would be appreciated and If anyone would be willing to pray for us even though you don't know us, I would be blessed.
Maina

BMGky

I can understand how scared you are for your father
My husband, age 70 at the time, got the news of his esophageal cancer following a CT scan for what we thought was a hiatal hernia. Talk about shock. Everyone who becomes acquainted with EC meets it with shock, disbelief and numbing fear. You have come to the right place. There are many survivors who post here. All EC people on this site run all the stages, from 0 to IVB, all ages, and both sexes. Many will be posting here to give you information that is most helpful.

My first recommendation to you is not to read the statistics. The data are not keeping pace with developments and usually do not include other health conditions occurring at the same time that reduce the survival rates. I had to stop going to them as they terrified and devastated me. Then, I found people who knew people who were surviving 8, 10 years and so on. Then, I found this site, and I come here every day. While there is sadness at times here, there is more joy. Some have an easy time with the treatment; others have difficult times. My husband had a challenging time. The important thing is that he had his treatment and surgery over 15 months ago and all his post scans, etc., show no evidence of disease!! Yay!! That's what you hope for is NED. They rarely say there is no evidence of cancer, but at that moment at that time, everything looks great. He will be followed for several years.

Others will ask you to give more information so that they can specifically be of help. They will ask you to contact them. These group members have been instrumental in getting people to a good facility, knowing the questions to ask, medications that might help, etc. Please continue to post here as each member sincerely wants to help. They have walked this bumpy path and if they can smooth the way for anyone, they will do their best. Good luck!!

BMGky

BMGky said:

I can understand how scared you are for your father
My husband, age 70 at the time, got the news of his esophageal cancer following a CT scan for what we thought was a hiatal hernia. Talk about shock. Everyone who becomes acquainted with EC meets it with shock, disbelief and numbing fear. You have come to the right place. There are many survivors who post here. All EC people on this site run all the stages, from 0 to IVB, all ages, and both sexes. Many will be posting here to give you information that is most helpful.

My first recommendation to you is not to read the statistics. The data are not keeping pace with developments and usually do not include other health conditions occurring at the same time that reduce the survival rates. I had to stop going to them as they terrified and devastated me. Then, I found people who knew people who were surviving 8, 10 years and so on. Then, I found this site, and I come here every day. While there is sadness at times here, there is more joy. Some have an easy time with the treatment; others have difficult times. My husband had a challenging time. The important thing is that he had his treatment and surgery over 15 months ago and all his post scans, etc., show no evidence of disease!! Yay!! That's what you hope for is NED. They rarely say there is no evidence of cancer, but at that moment at that time, everything looks great. He will be followed for several years.

Others will ask you to give more information so that they can specifically be of help. They will ask you to contact them. These group members have been instrumental in getting people to a good facility, knowing the questions to ask, medications that might help, etc. Please continue to post here as each member sincerely wants to help. They have walked this bumpy path and if they can smooth the way for anyone, they will do their best. Good luck!!

OH, YES! Prayers definitely.
We pray every day for our friends here on the board. You, your family, your father are all definitely included.

paul61

Your Dad has reason for "Hope"
Maina,

Your Dad does indeed have reason for “Hope”. Your surgeon has used some words that many esophageal cancer patients would love to hear. First “Stage 3” suggests that the cancer has not spread to other major organs in the body. Second “localized” implies the cancer is contained within the esophagus and has not spread to surrounding lymph nodes; and third he expects to perform surgery. Many esophageal patients find themselves diagnosed at Stage IV where curative surgery is not an option. So although no one wants to hear the diagnosis of cancer, you will find many survivors here diagnosed at the same stage your Dad is diagnosed.

The fact that your Dad does not have any other major health issues is a positive as well.

It sounds like the PET scan performed showed elevated sugar uptake in an area in the pelvis. That could be an item of concern and potentially change the current staging or it could be inflammation from a totally different issue. The MRI scheduled next week will provide additional clarification in that area.

You will, I am sure, be hearing from other people on this site who are survivors of Stage 3 esophageal cancer. They have executed the treatment plan your Dad’s surgeon is discussing with him. The plan typically includes chemotherapy and radiation treatment prior to surgery, followed by surgery to remove the cancerous tumor and surrounding tissue and lymph nodes that may have been affected.

As a survivor who has been through chemotherapy and surgery I must say that chemotherapy and recovery from surgery is a challenge. However, it sounds like your Dad is in good health and with a positive attitude he can complete the treatment. There will be some life style changes required post surgery but life does go on after treatment.

The best thing your Dad can do at this point is to get as educated as possible about his cancer. Not from various sites on the internet but from survivors of the same cancer that he has. He will find those people here.

He should get a second opinion from a surgeon and an oncologist at a major cancer treatment center that specializes in esophageal cancer. This is no reflection on his current medical team. Since esophageal cancer is still a relatively rare cancer in the US most local cancer treatment centers have limited experience with the advanced treatment and surgical options that are available.

I would suggest his next steps should be:

1. Get his additional tests completed as soon as possible. These should include the MRI and potentially a CT scan and endoscopic ultra sound.

2. Investigate a second opinion at a major cancer center with expertise in EC. If you tell us where you are located we can suggest a major center near you.

3. Contact his health insurance company and investigate the assignment of a “complex medical case advocate”. Many insurance companies provide nursing advocates that assist patients with complex medical issues in navigating the required insurance approvals.

4. Take a couple of days to deal with this frightening turn of events and then decide it is time to move on and start doing something about his current situation. This sounds hard I know; but depression and hopelessness translates to “helplessness”, and he does not have time for that now. Moving forward with a purpose will make him feel better and stronger.

5. Ignore the statistics he sees on the internet. They are historic and don’t reflect current treatment plans and outcomes. They do not take into account your Dad’s excellent health profile.

He is in good health, he appears to be a candidate for surgery, and he has a loving family for support.

He has reason to be hopeful.

We are here to support him.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Denise54

Not alone
Hi, I understand what you're going through, because my dad was diagnosed at the ending of May of this year with localized EC (stage III). I just happened to find this web site after researching about EC, and to see the different forums/discussion boards, to feel that we're not in this alone. I'm so surprised at how many other people have this diagnosis, and are going through the same types of emotions that we have. I didn't understand how this could happen as well, my dad was the same, was healthy, on it with his colonoscopies, on it with his health. This awful disease is here, right now, upon us, we are ready to fight this and beat it. I have a great friend that has this saying, "Let go and Let God" take care of everything. This site has helped me express my concerns and get the info you need. I have met good people on this post that are, or have been in the same situation. Will be continuing to pray for you and your family, please keep posting on how your dad is doing.

Denise

linda1120

Stage III
This is so fortunate that your dad is diagnosed with Stage III EC. My husband was also diagnosed with stage III. He went through chemo and radiation and then had a minimally invasive esophagectomy (surgery) at a major cancer center that we had to travel to. We got a second opinion
due to the advice of the people here on this website. It was the best thing we could do. My husband is six months out from his surgery and is doing well, but most importantly is cancer free.

Please follow Paul's plan of attack and you will do well. It is shocking and sends you into a tailspin, however you need to move fast with this cancer.

I will add your family to my prayers and we look forward to hearing how your dad is doing.

Linda

sandy1943

Hi, Maina, This is a place
Hi, Maina, This is a place of hope. Nothing is so grim that we don't try to lift each other up. I am a Survivor of stage three Ec. I was diagnosed in Nov, 2007 at age 64. After chemo and surgery in May 2008 I have tested cancer free .

I understand the hopeless feeling. To me it was like being given a death sentence. At that time, all I could find on the internet was grim statistics. I wasn't fortunate enough to find this site until I was well into recovery, but it still means a lot to me, even if it's just to say " Look at me, I am not a stat" I've had three good years and I'm praying God will give me many more.

I'm glad you have a strong family unit. If it wasn't for God and family, I don't know how I would have made it.

You, Dad and family will be in my prayers, Sandra

sangora

sandy1943 said:

Hi, Maina, This is a place
Hi, Maina, This is a place of hope. Nothing is so grim that we don't try to lift each other up. I am a Survivor of stage three Ec. I was diagnosed in Nov, 2007 at age 64. After chemo and surgery in May 2008 I have tested cancer free .

I understand the hopeless feeling. To me it was like being given a death sentence. At that time, all I could find on the internet was grim statistics. I wasn't fortunate enough to find this site until I was well into recovery, but it still means a lot to me, even if it's just to say " Look at me, I am not a stat" I've had three good years and I'm praying God will give me many more.

I'm glad you have a strong family unit. If it wasn't for God and family, I don't know how I would have made it.

You, Dad and family will be in my prayers, Sandra

As Long as There is life there is hope
I am a stage IV EC person who was given 60 days to get my house in order and nearly 16 months later I am still here and doing well. My original tumor has been resolved with much chemo and radiation. I am blessed to be one of those folks that handle the treatment well. I experience very few side effects and I attribute much of this to my over all attitude. At the time I was diagnosed I made the decision that I would control the disease, the disease would not control me. I take my bad days and find something positive to do on the good ones. Let your dad know this is not an easy road but if he figths hard, he can enjoy some success. There are many treatments out there so if the first shot does not work take the next one. By the way, I am not a surgery candidate as mine had spread to the lungs and liver at the time of diagnoses. My liver is now clean and the nodes in my lungs are inactive. Talk to your mom about the good possibilities out there and as someone else said, stop reading the stats. Those numbers will defeat you before you get started. There are many of us on here that have defied the odds. We have room in our group for one more odds defier. Sam

hopper52

PRAYERS ARE FORTHCOMING
Maina,

If you're looking for prayers, support and information you have found the place. This site is full of fighters and survivors who will try to provide as much information as you request (in many cases more than you request). I have found it invaluable as what to expect on side effects of chemo/radiation, nutrition tips, surgical and staging info, etc.

On that note, it sounds like your father is in otherwise excellent health which is a big plus. As people have already mentioned, don't look at statistics, or as Mark Twain once said...."there are three types of lies.......lies, damned lies and statistics."

Please provide more information on your fathers diagnosis/treatment plan as it becomes available and people will respond.

FYI on PET scans they inject a sugar based solution with radioactive material. The sugar tends to congregate around cancerous tumors which is why the tumor shows up "hot" on the scan. There are many other circumstances that may create a "hot" reading" that are not related to the cancer.

In any case, good luck and I will be praying for your father.

Michael Daniels (T3N0M0)
Brandon, Florida

llamp0922

Hope is what you can find
Hope is what you can find here! There are many EC patients here that have gone through radiation, chemo and surgery to learn about the best guy's name in the world: NED! NED is awesome! NED is No Evidence of Disease. That is the goal of whatever treatment your team choses. That is what EC patients hope for, pray for, believe in and dream about. There are plenty of us out here!

The statistics are daunting, but I always counted myself in the survivor's group, no matter what. I am 4 years from diagnosis: Squamous Cell Carcinoma, stage 3B (T4, N1, MO) inoperable, with 50% of my trachea obstructed by my tumor. It wasn't pretty, but worth every minute of treatment!

I will hold you and your dad in my thoughts and prayers. Keep us posted on how things are going! Stay strong!

Peace, Love and Positive Thoughts!
Lisa

linda1120

llamp0922 said:

Hope is what you can find
Hope is what you can find here! There are many EC patients here that have gone through radiation, chemo and surgery to learn about the best guy's name in the world: NED! NED is awesome! NED is No Evidence of Disease. That is the goal of whatever treatment your team choses. That is what EC patients hope for, pray for, believe in and dream about. There are plenty of us out here!

The statistics are daunting, but I always counted myself in the survivor's group, no matter what. I am 4 years from diagnosis: Squamous Cell Carcinoma, stage 3B (T4, N1, MO) inoperable, with 50% of my trachea obstructed by my tumor. It wasn't pretty, but worth every minute of treatment!

I will hold you and your dad in my thoughts and prayers. Keep us posted on how things are going! Stay strong!

Peace, Love and Positive Thoughts!
Lisa

Congratulations!
Lisa, your story is amazing! NED after four years with stage IV! You truly do give everyone hope.

I read your "about me" page and am very inspired.

Thank you for sharing,

Linda