Grandpa just diagnosed

snook717 · January 2011

My grandpa (68 yrs. old) has just been diagnosed with EC. What we know so far is that there is a mass (about 3cm) at the bottom of his esophagus where it meets the stomach. We were told the cells are moderate which they said is much better than poor. Blood work was done before his scope which came back normal for his liver and kidneys. He goes back to the doctor on Monday to see when he will start treatment and to let us know what stage it is. Then will also get a Pet scan done sometime during the week. I have been on the internet for the past week when we found out there was a mass and its been hell. I haven’t been able to eat or sleep, I feel so out of control and this waiting is so hard. I was told about this site and was hoping someone had some insight as to what we know so far. Could cancer still have spread to the liver and or kidneys even though the blood work came back normal? Thank you for any help that you can give!!

Unknown · January 2011

This comment has been removed by the Moderator

rmitchell · January 2011

Hi
My husband was told he had Stage II Esophageal Cancer back in August. He had 28 radiation and 6 chemo treatments. On Dec 10th he had surgery. They got all the cancer. He is doing very well. He lost a lot of weight through the process, but we are thankful he came through it well. He is 77. He is starting to have a little difficulty eating, but surgeon told him that he may have to have the new Esophagus stretched. I am calling him on Monday to set up the appointment. It is an outpatient procedure and should do the trick. I will keep you in my prayers. He can survive this terrible cancer so hang in there. There are a lot of survivors on this site and will help you a lot.
Reba

sandy1943 · January 2011

Hi,
I was diagnosed in
Hi,
I was diagnosed in Nov'07 with stage 111 with two lymph nodes in the stomach. There's no way to explain the terror and shock. Like you, what I found on the internet was very scary. I was 64 and had not been sick. I'd had some indigestion. Then when my food stuck I was sent for a scope.After diagnoses, I had a ct scan, barium swallow, and a pet scan. The pet scan indicated it had not spread. I was staged and my treatment plan was started. I had four rounds of very aggresive chemo and in may '08 I had the most invasive surgery (Ivor Lewis) to remove 80% of the esophagus and 1/3 of my stomach.

It is a very hard thing to go through, but it has been worth it. Today I am disease free. No two cases are alike, but on this site, you can learn so much from survivors and caregivers.

You will be hearing from some that can give you lot's of advice. They're not drs, but people that have done a lot of research and lived with this disease. Two of these are William and Sherri.

Will you let us know all about your dad's symptons, and where is he going for testing? Is this a cancer facility that deals with EC.Please check on here daily to hear from others.
I went into treatment with only my drs advice. Fortunately for me all went well. That's not always the case. That's why it's so imprtant to look at different things. The stats you read on the internet are just stats. That's not everyday experiences. I didn't find this site until I had finished treatment,but I'm still learning. After treatment we have to learn a whole new way of eating and it helps to hear what others have to say and how they're handling it.

On a very positive side, I'm healthier now than I was before. I had high cholestrol, blood pressure, and was diabetic. Because of my weight loss, and better eating I don't have any of this now. I have my energy back and every day is beautiful.

God Has been so good to me!
Sandra

snook717 · January 2011

unknown said:
This comment has been removed by the Moderator

Thank you
Thank you so much for your help! My Grandpa has had acid reflex for a long time and has been on medicine for high cholesterol, he has a heital hernia which was found during the upper GI and he has a herniated belly button. Overall his health is very good he is active and has never had any major problems with his health. What started to worry him like your mom was he had some episodes that he had trouble swallowing solid food. It didn't happed often but he knew it wasn't right so he told his doctor and that is when all of this started.

snook717 · January 2011

rmitchell said:
Hi
My husband was told he had Stage II Esophageal Cancer back in August. He had 28 radiation and 6 chemo treatments. On Dec 10th he had surgery. They got all the cancer. He is doing very well. He lost a lot of weight through the process, but we are thankful he came through it well. He is 77. He is starting to have a little difficulty eating, but surgeon told him that he may have to have the new Esophagus stretched. I am calling him on Monday to set up the appointment. It is an outpatient procedure and should do the trick. I will keep you in my prayers. He can survive this terrible cancer so hang in there. There are a lot of survivors on this site and will help you a lot.
Reba

Thank you
Thank you very much! I really appreciate you sharing your story with me.

snook717 · January 2011

sandy1943 said:
Hi,
I was diagnosed in
Hi,
I was diagnosed in Nov'07 with stage 111 with two lymph nodes in the stomach. There's no way to explain the terror and shock. Like you, what I found on the internet was very scary. I was 64 and had not been sick. I'd had some indigestion. Then when my food stuck I was sent for a scope.After diagnoses, I had a ct scan, barium swallow, and a pet scan. The pet scan indicated it had not spread. I was staged and my treatment plan was started. I had four rounds of very aggresive chemo and in may '08 I had the most invasive surgery (Ivor Lewis) to remove 80% of the esophagus and 1/3 of my stomach.

It is a very hard thing to go through, but it has been worth it. Today I am disease free. No two cases are alike, but on this site, you can learn so much from survivors and caregivers.

You will be hearing from some that can give you lot's of advice. They're not drs, but people that have done a lot of research and lived with this disease. Two of these are William and Sherri.

Will you let us know all about your dad's symptons, and where is he going for testing? Is this a cancer facility that deals with EC.Please check on here daily to hear from others.
I went into treatment with only my drs advice. Fortunately for me all went well. That's not always the case. That's why it's so imprtant to look at different things. The stats you read on the internet are just stats. That's not everyday experiences. I didn't find this site until I had finished treatment,but I'm still learning. After treatment we have to learn a whole new way of eating and it helps to hear what others have to say and how they're handling it.

On a very positive side, I'm healthier now than I was before. I had high cholestrol, blood pressure, and was diabetic. Because of my weight loss, and better eating I don't have any of this now. I have my energy back and every day is beautiful.

God Has been so good to me!
Sandra

Thank you for sharing your
Thank you for sharing your story! We are from Ohio and my Grandpa is going to Dr. Knight which is located in Boardman Ohio. He had acid reflex for a long time but what made him go to the doctor was because on occassion he was having trouble swallowing solid food.

snook717 · January 2011

Help with questions to ask
I was wondering if anyone can give me some advice as to what question to ask the doctor tomorrow. As far as we know he is going tomorrow to see what stage the tumor is in, to get a CT scan, to schedule a pet scan, and to find out when and how often he will get treatment. Also, we are from Ohio and I was also wondering if anyone had any recommendations for surgeons anywhere nearby (we are centrally located between Cleveland and Pittsburgh). I have read many of your posts and William talks very highly of a doctor in Pittsburgh. Should we know what surgeon we are going to have before chemo starts or does that not matter yet? Thank you so much for all of your responses, they are greatly appreciated.

unclaw2002 · January 2011

snook717 said:
Help with questions to ask
I was wondering if anyone can give me some advice as to what question to ask the doctor tomorrow. As far as we know he is going tomorrow to see what stage the tumor is in, to get a CT scan, to schedule a pet scan, and to find out when and how often he will get treatment. Also, we are from Ohio and I was also wondering if anyone had any recommendations for surgeons anywhere nearby (we are centrally located between Cleveland and Pittsburgh). I have read many of your posts and William talks very highly of a doctor in Pittsburgh. Should we know what surgeon we are going to have before chemo starts or does that not matter yet? Thank you so much for all of your responses, they are greatly appreciated.

Questions
Hi - before I go any further I want you to know I speak as a daughter of a 79 year old EC patient who was diagnosed in December of 2009 with Stage III, T3,N1, MO. I can speak from what I have seen. I am not a doctor, I am not giving you medical advice you need to get that from the doctors and the medical professional. HOwever, you should be an informed patient, don't take things for granted, ask lots of questions and make sure you fully understand everything that is said and if you don't ask again. Always have someone writing everything down, it is so hard in those appointments it is stressful and sometimes things get confused so it is good to get it written down.

First, you need to find out what kind of insurance your grandfather has, I hope it is regular Medicare ---- if he is on an HMO you have 1 day - Monday to switch him out of the HMO and get him into regular Medicare. He also will need a supplemental insurance program for his prescriptions etc. If he is on an HMO he will not be allowed to travel for second opinions or chose his surgeon. MY father had an HMO and they denied him a second opinion at Sloan Kettering in NY even though his regional hospital was not a recognized specialist for Esophageal Cancer. You have until the end of January to make a switch even though the enrollment period ended on Dec. 31.

Second, before you start any treatment the NCI has a great resourse that speaks about EC and getting a second opinion. http://www.cancer.gov/cancertopics/types/esophageal (you will need to cut and paste into your browser because this site doesn't hyperlink). You should go to a high volume cancer specialty hospital that has a team of doctors who treat esophageal cancer and specialize in dealing with this cancer. It is a rare cancer and you need an expert, not someone who may see a dozen cases a year. And in this situation I have said and believe, good enough isn't good enough, you need the very best.

This is not a battle for the faint of heart. It takes everything the patient has, and the patient needs to go into this fight for their life with the best team in place. Not doing that can be a very harmful to the patient. So seek the best medical care you can possibly get. The University of Pittsburg Medical Center is very good and I have only heard wonderful things about them and in my dealings with them have been very impressed. Other recognized hospitals which specialize in Esophpageal Cancer include, MD Anderson (Houston), Sloan Kettering in NYC (I have been with my father at both of these facilites as well and they are top notch), Dana Farber (Boston), Johns Hopkins (Baltimore), Duke (Raleigh/Durham), Mayo Clinic (MN) and many others(and this list isn't exhaustive by any means). The National Cancer Institute lists cancer centers at (http://cancercenters.cancer.gov/cancer_centers/index.html). US News and World Reports puts out a list (http://health.usnews.com/best-hospitals/rankings/cancer). Just a start for you to begin looking.

You need your grandfather to have the stage of his cancer determined and then a treatment plan put in place and yes the surgeon should be part of those discussions, everyone the oncologist, surgeon and radiologist all work together as a team. You also need a second opinion before he starts any treatment just to confirm the diagnosis and see if other strategies are recommended or someone might have seen something that might indicate a different approach. And one final note all this needs to be done at warp speed there isn't time to waste. But most important is getting the right diagnosis that is crucial to getting your grandfather the best treatment.

Good luck and please don't hesistate to ask any questions, or send me a personal email.

Good luck,
Cindy

Tina Blondek · January 2011

snook717 said:
Help with questions to ask
I was wondering if anyone can give me some advice as to what question to ask the doctor tomorrow. As far as we know he is going tomorrow to see what stage the tumor is in, to get a CT scan, to schedule a pet scan, and to find out when and how often he will get treatment. Also, we are from Ohio and I was also wondering if anyone had any recommendations for surgeons anywhere nearby (we are centrally located between Cleveland and Pittsburgh). I have read many of your posts and William talks very highly of a doctor in Pittsburgh. Should we know what surgeon we are going to have before chemo starts or does that not matter yet? Thank you so much for all of your responses, they are greatly appreciated.

Welcome
Hello Snook
I was a caregiver for my dad. He was dx in 11/08 with ec. He went through 6 weeks of chemo and radiation. He was not a candidate for surgery because he was stage IV and had a heart condition. In December he started having major pain on his right side. Went for ultra sound, thinking it may be gallbladder. It was not, it was cancer of the liver. He had a stent put in his eshophagus as well as a stent in the bile duct of his liver. 3 months later he passed away. You stated that you were pretty close to Pittsburgh. I know of others on this site that have highly recommended University of PA hospital. Yes, William speaks very highly of a Dr L..something, I can not remember, but I am positive William will be talking to you soon. You are at the beginning of this journey, you have to act fast to get the best results. We will be thinking of you and praying for you your dad and your family.
Keep in touch.
Tina in Va

snook717 · February 2011

unclaw2002 said:
Questions
Hi - before I go any further I want you to know I speak as a daughter of a 79 year old EC patient who was diagnosed in December of 2009 with Stage III, T3,N1, MO. I can speak from what I have seen. I am not a doctor, I am not giving you medical advice you need to get that from the doctors and the medical professional. HOwever, you should be an informed patient, don't take things for granted, ask lots of questions and make sure you fully understand everything that is said and if you don't ask again. Always have someone writing everything down, it is so hard in those appointments it is stressful and sometimes things get confused so it is good to get it written down.

First, you need to find out what kind of insurance your grandfather has, I hope it is regular Medicare ---- if he is on an HMO you have 1 day - Monday to switch him out of the HMO and get him into regular Medicare. He also will need a supplemental insurance program for his prescriptions etc. If he is on an HMO he will not be allowed to travel for second opinions or chose his surgeon. MY father had an HMO and they denied him a second opinion at Sloan Kettering in NY even though his regional hospital was not a recognized specialist for Esophageal Cancer. You have until the end of January to make a switch even though the enrollment period ended on Dec. 31.

Second, before you start any treatment the NCI has a great resourse that speaks about EC and getting a second opinion. http://www.cancer.gov/cancertopics/types/esophageal (you will need to cut and paste into your browser because this site doesn't hyperlink). You should go to a high volume cancer specialty hospital that has a team of doctors who treat esophageal cancer and specialize in dealing with this cancer. It is a rare cancer and you need an expert, not someone who may see a dozen cases a year. And in this situation I have said and believe, good enough isn't good enough, you need the very best.

This is not a battle for the faint of heart. It takes everything the patient has, and the patient needs to go into this fight for their life with the best team in place. Not doing that can be a very harmful to the patient. So seek the best medical care you can possibly get. The University of Pittsburg Medical Center is very good and I have only heard wonderful things about them and in my dealings with them have been very impressed. Other recognized hospitals which specialize in Esophpageal Cancer include, MD Anderson (Houston), Sloan Kettering in NYC (I have been with my father at both of these facilites as well and they are top notch), Dana Farber (Boston), Johns Hopkins (Baltimore), Duke (Raleigh/Durham), Mayo Clinic (MN) and many others(and this list isn't exhaustive by any means). The National Cancer Institute lists cancer centers at (http://cancercenters.cancer.gov/cancer_centers/index.html). US News and World Reports puts out a list (http://health.usnews.com/best-hospitals/rankings/cancer). Just a start for you to begin looking.

You need your grandfather to have the stage of his cancer determined and then a treatment plan put in place and yes the surgeon should be part of those discussions, everyone the oncologist, surgeon and radiologist all work together as a team. You also need a second opinion before he starts any treatment just to confirm the diagnosis and see if other strategies are recommended or someone might have seen something that might indicate a different approach. And one final note all this needs to be done at warp speed there isn't time to waste. But most important is getting the right diagnosis that is crucial to getting your grandfather the best treatment.

Good luck and please don't hesistate to ask any questions, or send me a personal email.

Good luck,
Cindy

Waiting AGAIN
Thank you so much! All of the info. is greatly appreciated. Well again we are waiting. The doctor went over today what will be started if the scans come back ok. 6 weeks of radiation with 2 rounds of chemo 96hrs each. I believe they called it something and 5FU treatments. This sounds very similar to the treatment that William had. The doctor also said that he recommends Dr. Luketich for surgery when the time comes. Just praying that he gets the scans done ASAP and the cancer has not spread. Again thank you everyone for all of your support.

Grandpa just diagnosed

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