Diagnosed with EC T3 N2 Mx - what's next?

ArchTB

Hello everyone,

My husband, 37 years old, got his ultrasound results today. The initial CT scan and endoscopy assessment gave us a hopeful prognosis of T1 N0 M0, which turned out to be too good to be true. His diagnosis based on the ultrasound is T3 N2 Mx.

We are pass the stage of crying and feeling hopeless. We will do whatever is necessary and we want to do it right. I read some of the posts here, and got some very helpful tips already. First of all, we would ask for the HER2 gene test. But I need more advice.

Few months before the general physical routine, my husband quit his job to start his own practice (architecture). Which means, he is currently on my insurance as a dependent. I am the only one with moderate but at least stable income. I cannot afford to leave my job because we will loose both the income and the insurance. So, I need your advice on several very practical things.

1. What specific questions I should ask my insurance provider to figure out our financial plan?

2. We are in New York City. Of course we would go anywhere necessary, but given my work situation, may be there is a good hospital & doctors here? We were hoping to qualify for EMR at Columbia University based on the primary diagnosis, but now it is out of the picture.

3. What should we eat? My husband was very enthusiastic about low-protein diet or even Breuss fasting. However, he has lost a lot of weight already (current weight 155 at 6'2) and suffers from iron deficiency. If we start chemo soon (which I really hope we will) he will be on protein shake anyway.

4. When we get an appointment with the oncologist, what questions should we ask?

Thank you!

Olya

unclaw2002

Hi,Welcome to our family.
Hi,

Welcome to our family. We will be here to help in any way possible - to answer questions, offer support or be a shoulder to cry on. It might not always be what you want to hear but it will be with the best intentions. My dad travelled from Louisiana to get a second opinion at Sloan in NY and I can say that the doctors there are excellent. Sloan is a top rated cancer center with a speciality in esophageal cancer and you don't want to mess around with this cancer. If you are in New York city and cannot travel I would go to Sloan Kettering. The Espohageal cancer area can be found at http://www.mskcc.org/mskcc/html/331.cfm (you will need to cut and paste into your browser because CSN doesn’t support hyperlinks).
Sloan is ranked as one of the top cancer hospitals in the country and the standard of care is outstanding. Additionally, you will have a team at the cutting edge in the treatment of this deadly cancer.

Oncologist:
David H. Ilson, MD, PhD is a medical oncologist and works on various clinical trials --- http://www.mskcc.org/prg/prg/bios/122.cfm Appointments for New Patients 646-497-9053.

Radiologist::
Karyn A. Goodman, MD is a radiologist --http://www.mskcc.org/prg/prg/bios/998.cfm --- she has an interesting video on the site explaining how radiation can be used to treat esophageal cancer. “Esophageal Cancer: Advances in Treatment” http://www.mskcc.org/mskcc/html/86446.cfm
Phone - 212-639-3983

Surgeons:
Nabil Pierre Rizk, MD, FACS – Phone 212-639-8357. http://www.mskcc.org/prg/prg/bios/835.cfm
Inderpal S. Sarkaria, MD – Phone 646-888-3265. http://www.mskcc.org/prg/prg/bios/1158.cfm
Dr. Sarkaria trained under James D. Luketich at the University of Pittsburgh Medical Center. Dr. Luketich is the one who pioneered the MIE for Esophageal Cancer.

If you have any questions please let me know. Feel free to send me a private email. I am sure you will receive replies that will set forth some things to consider. I limited my response to Sloan so I leave it to others to help fill in the other blanks.

Have faith --- Stage III is curable and we have many on this board who have had treatment, surgery and are living full and happy lives. There is much hope. Hang in there and just remember you are so lucky to have found this site at the beginning of your journey.

Best wishes,
Cindy

ArchTB

unclaw2002 said:

Hi,Welcome to our family.
Hi,

Welcome to our family. We will be here to help in any way possible - to answer questions, offer support or be a shoulder to cry on. It might not always be what you want to hear but it will be with the best intentions. My dad travelled from Louisiana to get a second opinion at Sloan in NY and I can say that the doctors there are excellent. Sloan is a top rated cancer center with a speciality in esophageal cancer and you don't want to mess around with this cancer. If you are in New York city and cannot travel I would go to Sloan Kettering. The Espohageal cancer area can be found at http://www.mskcc.org/mskcc/html/331.cfm (you will need to cut and paste into your browser because CSN doesn’t support hyperlinks).
Sloan is ranked as one of the top cancer hospitals in the country and the standard of care is outstanding. Additionally, you will have a team at the cutting edge in the treatment of this deadly cancer.

Oncologist:
David H. Ilson, MD, PhD is a medical oncologist and works on various clinical trials --- http://www.mskcc.org/prg/prg/bios/122.cfm Appointments for New Patients 646-497-9053.

Radiologist::
Karyn A. Goodman, MD is a radiologist --http://www.mskcc.org/prg/prg/bios/998.cfm --- she has an interesting video on the site explaining how radiation can be used to treat esophageal cancer. “Esophageal Cancer: Advances in Treatment” http://www.mskcc.org/mskcc/html/86446.cfm
Phone - 212-639-3983

Surgeons:
Nabil Pierre Rizk, MD, FACS – Phone 212-639-8357. http://www.mskcc.org/prg/prg/bios/835.cfm
Inderpal S. Sarkaria, MD – Phone 646-888-3265. http://www.mskcc.org/prg/prg/bios/1158.cfm
Dr. Sarkaria trained under James D. Luketich at the University of Pittsburgh Medical Center. Dr. Luketich is the one who pioneered the MIE for Esophageal Cancer.

If you have any questions please let me know. Feel free to send me a private email. I am sure you will receive replies that will set forth some things to consider. I limited my response to Sloan so I leave it to others to help fill in the other blanks.

Have faith --- Stage III is curable and we have many on this board who have had treatment, surgery and are living full and happy lives. There is much hope. Hang in there and just remember you are so lucky to have found this site at the beginning of your journey.

Best wishes,
Cindy

Thank you very much for your
Thank you very much for your support and advice, Cindy. We will be calling Sloan tomorrow morning.

Unknown

This comment has been removed by the Moderator

linda1120

you are not alone
I want you to know you are not alone. My husband is in a very similar situation to yours. He is a stage III with MX. He has gone through the chemo and radiation and we are having the surgery the beginning of January. He has a heart condition that is complicating things, but I just want you to know there is a great deal of support on this website. If it weren't for these people we wouldn't of gotten a second opinion at a major cancer hospital and my husband probably wouldn't have survived the surgery they had planned for him. We are on the West coast and are at OHSU in Portland, Oregon where they are one of the highest rated MIE specialists. We know my husband's surgery will be a high risk due to his heart, but we also know if he doesn't get the surgery the cancer will come back with a vengeance. He had a difficult time with the chemo/radiation and ended up in the hospital for eleven days. I see that your husband is very thin and chemo and radiation plays havoc with your taste buds and appetite. I would recommend he get a feeding tube as soon as possible. I also recommend you do your research on esophageal cancer so you can be your husband's advocate. My husband now calls me "Sarg!"

I wish you the very best and know you can write to me on this list or privately anytime.

God Bless,

Linda

ArchTB

linda1120 said:

you are not alone
I want you to know you are not alone. My husband is in a very similar situation to yours. He is a stage III with MX. He has gone through the chemo and radiation and we are having the surgery the beginning of January. He has a heart condition that is complicating things, but I just want you to know there is a great deal of support on this website. If it weren't for these people we wouldn't of gotten a second opinion at a major cancer hospital and my husband probably wouldn't have survived the surgery they had planned for him. We are on the West coast and are at OHSU in Portland, Oregon where they are one of the highest rated MIE specialists. We know my husband's surgery will be a high risk due to his heart, but we also know if he doesn't get the surgery the cancer will come back with a vengeance. He had a difficult time with the chemo/radiation and ended up in the hospital for eleven days. I see that your husband is very thin and chemo and radiation plays havoc with your taste buds and appetite. I would recommend he get a feeding tube as soon as possible. I also recommend you do your research on esophageal cancer so you can be your husband's advocate. My husband now calls me "Sarg!"

I wish you the very best and know you can write to me on this list or privately anytime.

God Bless,

Linda

thank you
Thank you Linda and good luck! I do hope that everything would go well with your husband's surgery.
Best wishes,

Olya

Callaloo

linda1120 said:

you are not alone
I want you to know you are not alone. My husband is in a very similar situation to yours. He is a stage III with MX. He has gone through the chemo and radiation and we are having the surgery the beginning of January. He has a heart condition that is complicating things, but I just want you to know there is a great deal of support on this website. If it weren't for these people we wouldn't of gotten a second opinion at a major cancer hospital and my husband probably wouldn't have survived the surgery they had planned for him. We are on the West coast and are at OHSU in Portland, Oregon where they are one of the highest rated MIE specialists. We know my husband's surgery will be a high risk due to his heart, but we also know if he doesn't get the surgery the cancer will come back with a vengeance. He had a difficult time with the chemo/radiation and ended up in the hospital for eleven days. I see that your husband is very thin and chemo and radiation plays havoc with your taste buds and appetite. I would recommend he get a feeding tube as soon as possible. I also recommend you do your research on esophageal cancer so you can be your husband's advocate. My husband now calls me "Sarg!"

I wish you the very best and know you can write to me on this list or privately anytime.

God Bless,

Linda

Linda, did you mean stage III with M0?
Just wanted to clarify because so much depends on staging that it's best to get the terms right. I don't think esophageal cancer can be staged (any stage) with an Mx (x=unknown). Stage III would be M=0. The fact that your husband is scheduled for surgery is a good thing, and also means he's definitely M0.

I was T3N1Mx after my first endoscopy, CT scan and ultrasound. It took a PET and biopsy to finally turn the X into a number before I was staged.

There's a page on this website that explains the TNM staging system. I tried to find it, but maybe someone else can post the link.

Callie

linda1120

Callaloo said:

Linda, did you mean stage III with M0?
Just wanted to clarify because so much depends on staging that it's best to get the terms right. I don't think esophageal cancer can be staged (any stage) with an Mx (x=unknown). Stage III would be M=0. The fact that your husband is scheduled for surgery is a good thing, and also means he's definitely M0.

I was T3N1Mx after my first endoscopy, CT scan and ultrasound. It took a PET and biopsy to finally turn the X into a number before I was staged.

There's a page on this website that explains the TNM staging system. I tried to find it, but maybe someone else can post the link.

Callie

staging
This whole staging issue has been very confusing as they did not do a endoscopic ultrasound on my husband. From the endoscope, biopsies, catscan, and petscan, the doctors gave us the MX because it was unknown. My husband has celiac node involvement, but no major organ involvement. Some say that he should be a MIa because of the celiac node involvement, but the surgeon's nurse says that the newer documentation in the last year no longer considers celiac node involvement a MIa. All I know is he has ec and I want it out!!!!!! :-) His oncologist and the surgeons say he is a stage III, so that is what I am holding onto. Surgery is definitely January 5th so we truly won't know what stage he is now after the chemo and radiation until they get in there and do surgery. It bothers me that we will never know the true stage because of their lack of sending us for a test. It is not offered locally, but we would have gone and gotten one if we knew.

Linda

Callaloo

linda1120 said:

staging
This whole staging issue has been very confusing as they did not do a endoscopic ultrasound on my husband. From the endoscope, biopsies, catscan, and petscan, the doctors gave us the MX because it was unknown. My husband has celiac node involvement, but no major organ involvement. Some say that he should be a MIa because of the celiac node involvement, but the surgeon's nurse says that the newer documentation in the last year no longer considers celiac node involvement a MIa. All I know is he has ec and I want it out!!!!!! :-) His oncologist and the surgeons say he is a stage III, so that is what I am holding onto. Surgery is definitely January 5th so we truly won't know what stage he is now after the chemo and radiation until they get in there and do surgery. It bothers me that we will never know the true stage because of their lack of sending us for a test. It is not offered locally, but we would have gone and gotten one if we knew.

Linda

OK, I get it... it's the celiac
There's a debate as to how to characterize it. Still sounds like M=0 because no other organs or distant metastasis has been confirmed. Celiac is considered regional node and not a distant node if the primary tumor is in the midsection of the esophagus, so is not M1. You've probably had all the relevant tests. The PET scan has ruled out metastases, so the ultrasound is unlikely to add anything other than the size of the tumor, which doesn't really matter so long as it's coming out. So best of luck to you and your husband.

Callie

linda1120

Callaloo said:

OK, I get it... it's the celiac
There's a debate as to how to characterize it. Still sounds like M=0 because no other organs or distant metastasis has been confirmed. Celiac is considered regional node and not a distant node if the primary tumor is in the midsection of the esophagus, so is not M1. You've probably had all the relevant tests. The PET scan has ruled out metastases, so the ultrasound is unlikely to add anything other than the size of the tumor, which doesn't really matter so long as it's coming out. So best of luck to you and your husband.

Callie

You Get It!
This is exactly what the doctors have told us, including the surgeons and their nurse. There is no metastasis to any vital organ according to both the original Petscan and the recent one. His tumor is in the mid-section. You described it better than I ever have been able to. Thank you!

Linda