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Esophagogastric junction cancer - both esophageal and stomach diagnosis - Atlanta area

atlantamm
Posts: 3
Joined: Jul 2009

My husband, 68, was recently diagnosed with the Esophagogastric junction cancer, which involves both the esophagus and stomach/cardia. We go tomorrow for staging and to have a consultation with a thoracic surgeon. We have met with the medical oncologist last week and have scheduled many appointments for tests, etc.

I have read lots on the internet, but it is my understanding that this combination adenocarcinoma is uncommon.

Can anyone help me with any information or where to get some good caregiver help. Does anyone know about the painful aspects of this kind of cancer. He is already on limited soft diet awaiting these PET/CAT scan tests.

In 3 weeks, he has lost 20 pounds, has no apetite, and doesn't really want to eat. Any suggestions as to what he could eat.?????

My thoughts and prayers are with each and all of you... This is a new experience with me. He has always been very healthy, with the exception of the emphysema he has.

My email is: atlantamm@aol.com if anyone would like to communicate direct... I am so hungry for INFORMATION and to have an idea of what to expect.

So glad I found this site... thanks, Ruthie

Atlanta area

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

you might read the information willaim marshall has listed he was around that age also not sure what all his entailed but good info.

good luck
moe

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

I agree with Moe, read the posts by William, he is very insightful. If his not eating is due to difficulty eating/swallowing because of a tumor than softer foods that won't get stuck as easily, such as mashed potatoes and gravy, puddings, etc. would help, it did with me prior to surgery and removing the tumor. I hope all goes well with all of the appointments I wish you the best!!

Cathy

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

I also agree with Moe--My husband Al is actually being treated by the same thoracic surgeon
as he was here in Pittsburgh. I found his site very helpful and informative on what is to come with my husband.

As far as your husbands weight loss it is typical I know I'm going through it the most that
you can do is treat food like medicine at least that is what the dietician told me make him eat every 2 hours, also go on line and look up blenderized diets they may look gross but they tase O.K. also try to get about 2-3 Boost or ensure into him each day. He may still loose weight but not as much.

Kath

c0399
Posts: 5
Joined: Aug 2008

HI Ruthie this is Frank we kind of neighbors I live in Seneca SC about 125 Miles north of Atlanta I am 66 and had EC surgery on the 19 of September 2008 at MUSC Charleston SC My doctor was DR Cayolin Reed She is Chief of surgery General Thoracic Surgery you cant get any better than her if you like to talk to me about my experience with EC - hope I can help you Frank

paul61's picture
paul61
Posts: 1107
Joined: Apr 2010

Ruthie,

Like Frank I am a close neighbor, I live in McCormick, South Carolina about 150 miles east of Atlanta. I had a T2N1M0 staging and had EC surgery at MUSC in Charleston SC. My doctor was Dr. Carolyn Reed. She is one of the best in the South East. I had an Ivor Lewis procedure and am currently completing follow up chemotherapy.

I would be happy to talk to you or your husband about my surgery.

Best Regards,
Paul Adams
AKA: "paul61"
McCormick, South Carolina

emg09
Posts: 252
Joined: Mar 2009

My father was also diagnosised with EC in Dec. 2008. I followed the advice from WilliamMarshall and took him to Pittsburgh, PA to meet with Dr. Luketich. It was a positive expererince, however my dad was not a candiate for surgery at this time. He's now in a clinical study in PA. If you'd like the information for that I'm happy to give it to you. He goes in for chemo for 2 weeks, comes home a week, and back. He's had 2 cycles and the tumor is shrinking. It's very hard dealing with this cancer.

atlantamm
Posts: 3
Joined: Jul 2009

We are going back to the oncologist today to get the results from all the tests my hubby has had last week, including the staging. He had a PET/CAT scan, EKG, and pulmonary function test (he also has emphysema), as well as blood work. We met with the thoracic surgeon in Atlanta, Dr. John E. Moore, who was recommended very highly to see if Pete is a good candidate for the surgery, which one has not been decided. He said he would describe the tumor as T3. What does that mean?

There is so much that is new to both of us... and I can so very much relate to the comments that the caregivers have made about how they feel. It is very scarey, not knowing what we are facing.

Thanks to everyone for any comments or help you can offer.

Will keep you posted. We are in the Atlanta area.

Ruthie

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Ruthie,

T3 means that the tumor invades the outermost layer of the esophagus wall. I wish you guys the best finding out all the results today. No matter what, know that there is hope and you guys can fight this!

Cathy

mdemetrius
Posts: 23
Joined: Jun 2010

William,
My dad was just diagnosed with stage 4 adenocarcinoma of the esophagus and I would looove for him to talk to you. he is veeery confident about following the orders of his oncologist who is the director of the gastroenterology oncology program at emory university hospital in atlanta. my dad is not a candidate for surgery so he will be taking a 3 chemo regimen starting on monday. i think its called the EOF protocol. my dad is "ready to fight fire with fire" so we are all on a mission. i think it is very important to hear from someone who's been through it. his biggest concern is that his feelings, both emotional and physical, may not be normal. he is not a "support group" type of person so i just read the replies to him. i do think though that talking to someone would make a world of difference at this early stage. the doctor has not given him any prognosis, and we aren't even going to get into the internet stats. the more positive he is, the better. although my dad is at stage 4, no organs have been involved, yet there are cancerous lymph nodes. i think he is mentally weary and frustrated because the last 3 weeks have been a whirlwind of tests, stent, and port. now we just want to get the show on the road! please email me if you can so that we can exchange phone numbers. my email is madfreedom2003@yahoo.com
Thanks,
Marissa

mdemetrius
Posts: 23
Joined: Jun 2010

William,
My dad was just diagnosed with stage 4 adenocarcinoma of the esophagus and I would looove for him to talk to you. he is veeery confident about following the orders of his oncologist who is the director of the gastroenterology oncology program at emory university hospital in atlanta. my dad is not a candidate for surgery so he will be taking a 3 chemo regimen starting on monday. i think its called the EOF protocol. my dad is "ready to fight fire with fire" so we are all on a mission. i think it is very important to hear from someone who's been through it. his biggest concern is that his feelings, both emotional and physical, may not be normal. he is not a "support group" type of person so i just read the replies to him. i do think though that talking to someone would make a world of difference at this early stage. the doctor has not given him any prognosis, and we aren't even going to get into the internet stats. the more positive he is, the better. although my dad is at stage 4, no organs have been involved, yet there are cancerous lymph nodes. i think he is mentally weary and frustrated because the last 3 weeks have been a whirlwind of tests, stent, and port. now we just want to get the show on the road! please email me if you can so that we can exchange phone numbers. my email is madfreedom2003@yahoo.com
Thanks,
Marissa

big pappi
Posts: 2
Joined: Aug 2010

I want to add a summary of what has been going on with my wife's Cancer. I too, need to know more. What to expect, what do you read into what I just told you about my wife's status, etc.

Here is my letter:

My name is Pino. My wife Lisa, was diagnosed with adenocarcinoma from a Biopsy performed during an EGD in Late July 2010, because she had trouble swallowing for a couple of months. An initial Upper GI showed a mass. EGD & Biopsy & CT Scan confirmed it being a Cancerous Tumor. This all started because she has always had trouble battling GERD. In May, she started experiencing some trouble swallowing, but it got worse in June. In mid July, we went to get the UGI, then 2 weeks later a EGD. On Aug. 2nd, we received the official diagnosis from her GP and Gastrointestinal DR. This past Friday, Aug. 20th, we had our first appointment with our new Oncologist at MD Anderson in Houston, Tx. He would not really get into too much detail about what he suspects, until he received all new tests done there at MD Anderson. He received all the reports and test results and scan, tissues, etc. from our Dr.'s and revieved their findings. But still wanted to go with new and updated testing. That Friday, Lisa had blood work, X-rays, CT Scan.
We went back today, Aug. 25th, for more blood work and a PET Scan. They also installed an external Catheter to use for the Chemo therapy, instead of a regular IV.
Our Dr. will again speak to us on Friday, Aug. 27th, to explain to us what stage he believes Lisa is at and any other developments pertaining to any spread of the Cancer.
He told Lisa On Tuesday, this week, that he wants to start her on Chemo first, for 4 months going every 14 days. He wants to check on the Chemo after 2 months to see how it is helping or not. No mention of radiation has been spoken yet. Surgery, he feels, may not be needed just yet because he wants to shrink the Tumor and perhaps try to eliminate it that way. Of course, all this was said before he got back the Pet scan results and before he has spoken to us in dept about her condition or prognosis. We are so scared and fearful of the news we will get on Friday. We are Faith based people and pray to our LORD all the time. We pray that GOD heals Lisa of her Cancer and gives her a long life afterwards to pay it forward, to spread the word about Cancer prevention.

Praise God Almighty. He is the Healer. I will pray tonight for all those patients out there in the world and the families going through this as well. Reading this Blog does inspire me to have hope and confidence in this life altering event. I'm sorry I wrote a long letter, but this is therapy for me. I certainly will pray for you all here.

GOD BLESS EVERYONE!!

Gatoraid's picture
Gatoraid
Posts: 71
Joined: Aug 2010

It seems that you may be where I would be a few months from now if I hadn't been diagnosed with stage III Ec on August 9th. I have a 2 inch long tumor that is obstructing 2/3 of my lumen (stomach entrance) with 2 lymph nodes positive; one at the top of my stomach and one a little farther away in my abdomen. The CT/Pet scan will show alot. cancer cells react to sugar and the Pet scan will show any cells that have obsorbed sugar, which is a good indicator of the spread. I will be trated at Mass General here in Boston, starting with Chemo and 28 days of radiation using IMRT which precisely targets the tumor to keep exposure to good tissue to a minimum. At MGH their approach is to shrink and kill the tumor as fast as possible which the radiation accomplishes. In the old days you received one massive dose which was not a good thing, but now they give you 28 smaller doses over 28 days (5 1/2 weeks) to give the radiation in smaller doses more gradually. The chemo goes after dividing cells throughout your body. The cancerous cells die, while to good cells recover withing 24 hours. The information you get on the internet may be dated or really not apply to your treatment so please don't scare yourself over misinformation. I found cancer.net to be good. As far as eating goes, protien is important. Sylvester Stallone puddings are really good and give you 20 grams of protein in one small can. Since we are both starting out, please feel free to contact me and exchange information. Much of what you see here is helpfull to a degree but I found that by doing some thorough research I already knew alot of what I was told here. I looked up the 10 best places for cancer and found 2 in Boston, and poured over their websites. I also looked at the Mayo Clinic. You want a place that has a large cancer setup with a team approach: Medical Oncologist to manage the team, Thoracic surgeon with solid experience in lapascopic non invasive surgery, state of the art radiology at a hospital with a cancer wing with nurses specializing on cancer care. This is scary stuff but you must be actively involved and comfortable in the decisions that effect you. Remember, alot of people make it through this and many of the statistics don't apply to your situation. 20 years ago, adenocarcinoma accounted for only 10% of all Esophagus Cancel and today it is 50%. Most clinical trials in the past had alot of Squamus Cell which is much worse, which is why any statistics that had both are frightening. Keep in touch and don't get discouraged. My approach is to know everything about this; the more I know, the better my chances. We can get through this so don't be discouraged.

Take care, Jim aka gatoraid

big pappi
Posts: 2
Joined: Aug 2010

Jim, or do want me to call you Gatoraid? Either one is cool with me.

My name is Pino. Email me at dabudman4567@yahoo.com. We can communicate further.
Thanks for your reply. As for others out there in same situation, I welcome friendships
of support and encouragement and IMFORMATION that is of value, not doom and gloom.
Although, I need to know that facts, no sugar coating. I always expect the worse, but hope and pray for the best. I pray to GOD always and keep my faith in Him.

GOD BLESS!!

Pino

cancersupport1
Posts: 11
Joined: Aug 2010

Does your husband use a feeding tube? My husband lost over 40 pounds until he started using a feeding tube.He has gained @30 lbs since he started with the feeding tube. He has esophageal cancer and has had several chemo treatments. Ask your MD if your husband doesn't already have one.

I hope this helps.

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