Just Diagnosed - Awaiting Staging

hopper52

I had an endoscopy last Thursday and it revealed I have an adenocarcinoma in my espohagus near the stomach juncture. My symptons leading to the scope was occasional difficulty in swallowing (quite recent) and pain in the chest and between my shoulder blades and quite a bit of burping. The chest pain resulted in 3 stents in my RCA in December but the symptons remained the same. Looking at sites like this and others, I suspected possible EC or a hiatal hernia. I convinced my PCM to refer me for an endoscopy which I had done at Moffitt Cancer Center in Tampa which confirmed my worst fear. Had a PET scan last Thursday and am scheduled for a CT scan Wednesday of this week and we'll go from there. Would appreciate any suggestions to help me prepare for whatever may be in store for me in the near future. God bless everyone who contributes here.

fredswilma

Hi
So sorry that you have
Hi
So sorry that you have come to visit us here, but here is the best place for you, best advice i can give you is to put your shoulders back, head up, find yourself the best support team you can find. It is still early days for you and the waiting can be the worst, hopefully you have caught this dreadful disease in time, question everything, I found taking a notebook with me worked really well, write down any questions you have beforehand and also write down the doctors replies. It is such an emotive time that your brain doesn't seem to take everything(actually anything) in. There are much more qualified people on this site who know so very much about this disease(known as The Beast)and they will all offer you really good advice and I am sure will be along to say hello. I just wanted to say hi and let you know that you are not alone, I will be thinking of you and hoping for the best possible outcome.
You are in my thoughts.
Ann

paul61

Welcome to our little EC family
Welcome to our little family. I am sorry that you have found us under what I am sure is frightening circumstances.

It sounds like you are getting testing done for staging quickly. That is certainly a good thing. I would think in addition to a PET and CT scan to determine if there is any metastasis, an endoscopic ultra sound would be valuable to define to what depth the tumor his invaded the layers of the esophagus and if there is any lymph node involvement.

Once you have staging; a treatment plan can be defined. Ideally you may be a candidate for surgery. Most successful treatment includes a tri-modal approach involving radiation of the primary tumor site, chemotherapy to address potential spread of cancer cells outside the tumor site, and surgery to remove the primary tumor and a margin of tissue around the tumor.

There are several methods for removing the affected area of the esophagus and stomach. Be sure to take careful notes when you meet with the medical team that does the staging. If surgery is an option, be sure you investigate the surgical options carefully. A second opinion in this area is very valuable.

Be sure one of your medical treatment opinions comes from a nationally recognized cancer center with experience in dealing with esophageal cancer. Moffitt certainly has a good reputation so that is a great place to start.

The next few weeks will be like a blur with lots of information and terms you do not understand coming at you.

-Be sure to take notes and if you don’t understand a term ask to have it explained, medical professionals have their own vocabulary and they tend to forget it is a new language to us.

-You will hear some grim statistics. Ignore them. They do not reflect current treatment success or your will to get better.

-Do your best to stay positive. There will be times when you will give in to the fear and frustration of having this diagnosis. Have the emotional event, hopefully with the support of someone you love, and move on. Focus on doing what is required to give you the best outcome.

-Friends will ask to help; but they don’t know what to do. Be sure to accept their offer and tell them what they can do to help you.

-Come here often to ask for advice from survivors or just to vent when that is necessary.

We will be thinking of you and praying for good results from your staging.

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!

sandy1943

Hi Welcome, I can't add much
Hi Welcome, I can't add much that the others haven't already said. Be sure and take someone with you for the consultations. Like the others said there will be so much coming at you.Ask for copies of all test, blood ,scans, Etc. Keep a folder and a notebook with everyting in it. My husband and daughter went with me. She was my secretary.
This is a frightening time. We've all been there and understand. I thought I was given a death sentence With stage 111 and 3 positive lymph nodes,But three years later, after chemo and surgery I am desease free ( NED) This is the best site to get accurate advice.
Someone will know how to help with anything that comes up. We're not statistics. We've lived it.
Praying for you, Sandra

Unknown

This comment has been removed by the Moderator

rose20

unknown said:

This comment has been removed by the Moderator

So sorry to hear this..
So sorry you had to be diagnosed with this disease. I have a brother who was diagnosed with EC this past August at the age of 51. I can say it is a fight for your life. I hope they have caught yours early enough. You are sure at the right place here, so many are going through the same and are so knowledgeable about treatments and the right doctors to seek out and the right questions to ask.
Hold on to God He will see you through this.
Let us know when they stage you.
Prayers for you and your family.

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Philippians 4:7

Unknown

This comment has been removed by the Moderator

BMGky

Hope your staging has good results.
Sorry to hear of your diagnosis. Your symptoms were quite similar to my husband's. My son did a rotation at Moffett in Tampa during his residency. He was impressed with the hospital. From what I understand, they offer state of the art treatment that has helped many late stages to have a longer life with quality. Let's hope you are a candidate for surgery. Once you find out what they are recommending, post the information here on this site. Many will come forward with their experiences and suggestions. Our friends here sustained me through my husband's month long hospitalization, swallowing problems, eating issues, etc. It is a journey like you've never made before. However, let us hope you can get the best news you can under the circumstances and please keep us updated. We each want to cheer you on and encourage you in this battle. My husband was able to have the surgery (the invasive Ivor Lewis) and is now back practicing, riding his beloved John Deere lawn mower and having an afternoon beer or so, enjoying the beauty of spring. (He says that yard work and alcohol are the secrets to a good marriage....we've been married 46 years now--still on our honeymoon... The length of our marriage and the age of our children are starting to catch up with the age I claim to be....) Just trying to let you know, hope is always present. We wish you the best.

hopper52

rose20 said:

So sorry to hear this..
So sorry you had to be diagnosed with this disease. I have a brother who was diagnosed with EC this past August at the age of 51. I can say it is a fight for your life. I hope they have caught yours early enough. You are sure at the right place here, so many are going through the same and are so knowledgeable about treatments and the right doctors to seek out and the right questions to ask.
Hold on to God He will see you through this.
Let us know when they stage you.
Prayers for you and your family.

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Philippians 4:7

Thanks
Thank you for your comments......I find Isaiah 26:3-4 comforting also. I try to find a verse or two daily to meditate on.

I had my CT scan today so I should find out "the rest of the story" in a couple of days. The waiting is the worst part. Thank God I found this site with so many caring and encouraging people.......thanks again

hopper52

Still Awaiting Staging
Had my CT scan today so I should find out the nature of the beast in a couple of days. I really appreciate everyone's kind comments. Kind of nice to know I'm not on my own.

DanaM

Welcome into the Family Hopper
Hi Hopper,
I’m sorry for the below novel, in advance. I know you have all the technical information that you need now, as I once obtained an education here, after I found this site, through His grace. I know what a blessing all of these folks who post here are and have been to me. It might not be proper to buy big game tickets, but I do every now and then-if the Lord wants me to have it, I only need one. I would first fly everyone on this site to somewhere really nice, hire nursing staff for those who need it and have a esophageal cancer site network Family Reunion and start a fund for folks who don’t have insurance or the means to get to Pittsburgh or to wherever it is they are going for treatment, as I am enroute to the University of Pitts/Pres on Monday. Lord knows I’d give the majority of it away, the things I need the most-money can’t buy

My husband was diagnosed with EC a month or so ago and it’s been a life altering event. For me, it’s like I have it. I’m going thru everything he is on equal levels, without the surgery. There are two groups of folks, one group who has experienced a life altering event and those who haven’t yet. As I go thru it, I’m trying hard not to disappoint my Lord, although I fall down sometimes.

Everyone here is on a ladder. Some folks are a rung below you and some folks are a rung above. As my husband profoundly stated, “I’m just glad to be on the ladder.” We have been on an emotional roller coaster, but we are leveling out. You can expect to experience a variety of emotions-then you just focus on a treatment plan and get moving with it and your life.

We have a bible study on our lunch hour where I work and we were discussing trials and their purpose. I see you’re a man of faith, so you will understand my language here. Some are to bring us even closer to Him, to make us dependant on Him and to remind us that not by power or might will we endure, but by His spirit. I often use the analogy of a huge diamond ring. They are of worth in the world and if you want one, you have to work hard and go through some stuff to get the cash to buy one. If they were free and everyone had one, they would be worth little to nothing.

Our salvation comes free and the price has been paid. But to really get where we’re ultimately going one day, we have to endure some stuff. We sort of pay now in our trials and tribulations; going thru what we have to go thru while still loving Him, so when the day comes that we meet the Lord, we will step into a Kingdom devoid of pain and suffering and trials. What would it be worth without trials?

I recently did a study on Matthew 5; where Jesus says, “Blessed are the poor in spirit, for theirs is the Kingdom of Heaven.” My carnal mind struggled with this idea....but mediation on it brought me something very comforting…. In Isaiah 66:1 there is this….“ But on this one will I look: On him who is poor and of a contrite spirit, And who trembles at My word.” So when I am needy unto Him, He will be with me and with YOU.

I confess, there are times when I’m afraid or depressed. I think that might be fairly normal. But it just causes me to draw closer to Him, thru His word, thru prayer and I am comforted. I go thru stuff all week and on Sundays, after church-for a little while I feel like I’ve been splashed in the face with living waters and am refreshed. My flesh would have me in bed sleeping late on Sunday, robbing me of a drink.

You are definitely not alone in so many ways. Here you will find good and gracious folks to lean on and they along with the Lord will keep you from feinting. Keep your hope in the Lord to renew your strength. I share your situation. We are all in this thing together. I will keep you in prayer Hopper as He keeps you high upon a rock. (Some of my favorites to meditate on….)
“ Fear not, for I have redeemed you;
I have called you by your name;
You are Mine.
2 When you pass through the waters, I will be with you;
And through the rivers, they shall not overflow you.
When you walk through the fire, you shall not be burned,
Nor shall the flame scorch you.
3 For I am the LORD your God,
The Holy One of Israel, your Savior;
Isaiah 43:1-3
For in the time of trouble
He shall hide me in His pavilion;
In the secret place of His tabernacle
He shall hide me;
He shall set me high upon a rock.
Psalm 27:5

chrissiebass

DanaM said:

Welcome into the Family Hopper
Hi Hopper,
I’m sorry for the below novel, in advance. I know you have all the technical information that you need now, as I once obtained an education here, after I found this site, through His grace. I know what a blessing all of these folks who post here are and have been to me. It might not be proper to buy big game tickets, but I do every now and then-if the Lord wants me to have it, I only need one. I would first fly everyone on this site to somewhere really nice, hire nursing staff for those who need it and have a esophageal cancer site network Family Reunion and start a fund for folks who don’t have insurance or the means to get to Pittsburgh or to wherever it is they are going for treatment, as I am enroute to the University of Pitts/Pres on Monday. Lord knows I’d give the majority of it away, the things I need the most-money can’t buy

My husband was diagnosed with EC a month or so ago and it’s been a life altering event. For me, it’s like I have it. I’m going thru everything he is on equal levels, without the surgery. There are two groups of folks, one group who has experienced a life altering event and those who haven’t yet. As I go thru it, I’m trying hard not to disappoint my Lord, although I fall down sometimes.

Everyone here is on a ladder. Some folks are a rung below you and some folks are a rung above. As my husband profoundly stated, “I’m just glad to be on the ladder.” We have been on an emotional roller coaster, but we are leveling out. You can expect to experience a variety of emotions-then you just focus on a treatment plan and get moving with it and your life.

We have a bible study on our lunch hour where I work and we were discussing trials and their purpose. I see you’re a man of faith, so you will understand my language here. Some are to bring us even closer to Him, to make us dependant on Him and to remind us that not by power or might will we endure, but by His spirit. I often use the analogy of a huge diamond ring. They are of worth in the world and if you want one, you have to work hard and go through some stuff to get the cash to buy one. If they were free and everyone had one, they would be worth little to nothing.

Our salvation comes free and the price has been paid. But to really get where we’re ultimately going one day, we have to endure some stuff. We sort of pay now in our trials and tribulations; going thru what we have to go thru while still loving Him, so when the day comes that we meet the Lord, we will step into a Kingdom devoid of pain and suffering and trials. What would it be worth without trials?

I recently did a study on Matthew 5; where Jesus says, “Blessed are the poor in spirit, for theirs is the Kingdom of Heaven.” My carnal mind struggled with this idea....but mediation on it brought me something very comforting…. In Isaiah 66:1 there is this….“ But on this one will I look: On him who is poor and of a contrite spirit, And who trembles at My word.” So when I am needy unto Him, He will be with me and with YOU.

I confess, there are times when I’m afraid or depressed. I think that might be fairly normal. But it just causes me to draw closer to Him, thru His word, thru prayer and I am comforted. I go thru stuff all week and on Sundays, after church-for a little while I feel like I’ve been splashed in the face with living waters and am refreshed. My flesh would have me in bed sleeping late on Sunday, robbing me of a drink.

You are definitely not alone in so many ways. Here you will find good and gracious folks to lean on and they along with the Lord will keep you from feinting. Keep your hope in the Lord to renew your strength. I share your situation. We are all in this thing together. I will keep you in prayer Hopper as He keeps you high upon a rock. (Some of my favorites to meditate on….)
“ Fear not, for I have redeemed you;
I have called you by your name;
You are Mine.
2 When you pass through the waters, I will be with you;
And through the rivers, they shall not overflow you.
When you walk through the fire, you shall not be burned,
Nor shall the flame scorch you.
3 For I am the LORD your God,
The Holy One of Israel, your Savior;
Isaiah 43:1-3
For in the time of trouble
He shall hide me in His pavilion;
In the secret place of His tabernacle
He shall hide me;
He shall set me high upon a rock.
Psalm 27:5

DanaM,
I just have to say
DanaM,

I just have to say that is so beautifully said. I am going thru the "angry" stage, but I know I should not be angry because he is right beside me and my family at this time, I am just glad my GOD is a forgiving GOD! Thanks for your words of comfort and peace.

Hopper, I will be praying for you.

DanaM

chrissiebass said:

DanaM,
I just have to say
DanaM,

I just have to say that is so beautifully said. I am going thru the "angry" stage, but I know I should not be angry because he is right beside me and my family at this time, I am just glad my GOD is a forgiving GOD! Thanks for your words of comfort and peace.

Hopper, I will be praying for you.

Chrissiebass, My Sister
Dearest Chrissiebass,
You’re welcome and thank you for being here, for being a part of this family, this “body.” Don’t beat yourself up for being angry like I have done. You are exactly right, He is a forgiving God and slow to anger. Lord knows I am grateful for that…or I might just be in a pit right now that I can’t crawl out of.

He knows His ways and His thoughts are so much higher than ours. I can’t imagine anyone not being angry at some point, we’re angry at the cancer because disease is not of God. It belongs to the thief who comes to steal and rob. Like you, when I feel angry or just plain upset or depressed-even in the midst of it-I ask forgiveness for not being able to trust Him implicitly enough to not feel those feelings; yet I confess my flesh is not immune to distress.

There are times I sob like a baby and feel so weak, and in the same breath, amidst the tears-I am asking Him to forgive me, because in my heart I know He is here and with us ALL and that it IS going to be OK. It’s my grimy flesh that I fight with. And then I dust off and fight my way back into His presence.

I will be praying for you and your father, for energy, strength and physical healing. Doctors don’t dictate the time we have. Honestly, only He knows. Be steadfast and immovable in His love. Sometimes, that is all we have to hold onto…. Josh 1:9: Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.” Psalm 34:19 Many are the afflictions of the righteous: but the LORD delivereth him out of them all. “

Yesterday, I lamented over the fact that I again, had slipped into a state of sadness and hopelessness, which is what the thief loves…he left with his hands full of my joy.
I am a willing vessel, but one with many lumps that are being smoothed by our Potter’s Hands. Yesterday, I felt exactly as below and offered this up to the Lord… Even though I long to be His champion, I really miss when I swing at times...

Lord, please have patience with me.
I’ve not yet become what you want me to be.
I want you to know that my real heart’s desire
Is to fulfill your purpose; Be consumed by Your fire.

I confess there are days when I don’t hit the mark
Your light is shining; yet I sit in the dark.
You’ve given me all that I need for a win
And still there are times that I sink into sin.

If the veil wasn’t lifted or the heavy price paid
I’d be starting in black and heading to fade
My scorecard would show nothing but loss
We would all be captives, except for the Cross

The depth of your love, I just can’t comprehend
I know nothing like it, but try to transcend
I study Your Word, I know well the story
And still I fall short of showing Your Glory.

Glorify Your name, have mercy on me
I pray for Your will, whatever that be
Forgive me my flesh and my past childish ways
Rapture me Lord at the end of these days

My ways are imperfect, try as I do
But my heart’s not confused about how I love You
Lord by Your Spirit, I’ll be what You need
Breathe on us Lord, so we can succeed

hopper52

PET & CT COMPLETED
Received a call from my doctor (on Good Friday nonetheless) to give me the results of my scans. No metastasis...not found in any other organs. I guess that's a good start. He's getting me scheduled for an endoscopic ultrasound and then I guess I'll know more. Will keep posting as more info becomes available.

William, there's a surgeon at Moffitt that does MIE (Dr Meredith) so hopefully things will move right along.

Unknown

hopper52 said:

PET & CT COMPLETED
Received a call from my doctor (on Good Friday nonetheless) to give me the results of my scans. No metastasis...not found in any other organs. I guess that's a good start. He's getting me scheduled for an endoscopic ultrasound and then I guess I'll know more. Will keep posting as more info becomes available.

William, there's a surgeon at Moffitt that does MIE (Dr Meredith) so hopefully things will move right along.

This comment has been removed by the Moderator

hopper52

PET, CT and EUS COMPLETED
I posted the results of my PET and CT previously. I had my endoscopic ultrasound today. Dr Marshall said the tumor has penetrated the muscle wall (T3)but she sees no Lymph Node Involvement.

Looking at the criteria William so graciously provided, I'm hope with the information I have that I'm looking at Stage 2A (T3N0M0). I meet with a radiation oncologist a chemo oncologist and a surgeon next week.

Praise the Lord thus far.

Unknown

hopper52 said:

PET, CT and EUS COMPLETED
I posted the results of my PET and CT previously. I had my endoscopic ultrasound today. Dr Marshall said the tumor has penetrated the muscle wall (T3)but she sees no Lymph Node Involvement.

Looking at the criteria William so graciously provided, I'm hope with the information I have that I'm looking at Stage 2A (T3N0M0). I meet with a radiation oncologist a chemo oncologist and a surgeon next week.

Praise the Lord thus far.

This comment has been removed by the Moderator

linda1120

hopper52 said:

PET, CT and EUS COMPLETED
I posted the results of my PET and CT previously. I had my endoscopic ultrasound today. Dr Marshall said the tumor has penetrated the muscle wall (T3)but she sees no Lymph Node Involvement.

Looking at the criteria William so graciously provided, I'm hope with the information I have that I'm looking at Stage 2A (T3N0M0). I meet with a radiation oncologist a chemo oncologist and a surgeon next week.

Praise the Lord thus far.

Great News
I have been following your progress throughout your diagnostic testing. This is wonderful news and it sounds like you have a top notch surgeon. My husband was stage III, went through chemo and radiation, a MIE January 5th of this year and just had his three month catscan with no evidence of disease. It has been a rough journey, but he has made it and is cancer free at this point. We know that the power of prayer has played a huge role in his survival. His health is complicated with heart issues, including a aortic stenosis (aortic valve closing due to calcification). I am working on getting him into a clincal trial for a non invasive replacement valve.

I am so pleased that you will be a candidate for surgery and have the opportunity for life. I am sorry that you have to go through this and meet all of us under these conditions. Know you have found a wonderful site with very caring people. We have been very blessed by them.

Linda