Can't do the surgery

tor1624

Hi All,

My uncle was diagnosed with esophageal cancer in March and they seemed to have a good plan, with chemo then radiation and hopefully not the surgery, which is what we realized we should have done right away all along. He handled the chemo pretty well - strong guy, very together, pushed himself a little and still went to work. The radiation we are figuring out I think did more harm then good, could not swallow, a lot of tissue. Thought all of the cancer was gone, when tissue was just covering it. He is now T3N1M0. He went into the hospital with some complications a month or so ago and he expected to get the surgery and the surgeon said he could not do it and it would kill him (I am led to believe he is one of the top surgeons too). According to my family, the tumor is too high up, became larger, and touching/associated with too many other organs? They left the hospital discussing palliative care, which made me beyond sad, but changed their tune a little and said lets try some more rounds of a different chemo and hopefully it will shrink the tumor, which could lead to doing the surgery. The one thing I think the chemo helped with was making sure the cancer didn't spread elsewhere, which gives me hope. He has now had pneumonia twice, he has been on a feeding tube for months, his weight has been okay and has stayed the same, and he recently got a stent put in due to the tumor pushing into the trachea. His spirits are slowly diminishing as well as his wife's. Today they are visiting their oncologist and the surgeon I guess to discuss the next plan of action if there is one. I am trying to think of questions to ask. They are considering MD Anderson, but I hope to God they don't turn them down. We are also asking if the surgeon would just risk his life and do the operation. We are also going to try to send records to a Dr. Kelson at Sloan Kettering in NYC to see if he can come up with a different chemo regime that could shrink it that no one has thought of (but he is out of town for the next 2 weeks). We are also with Pinnacle Care too and hoping something else will come up. If anyone has any suggestions I would LOVE to hear them, especially before these appts today. Any good questions we can ask? I just want him to be able to eat again and drink again. His coughing is really terrible too, it is really sad to hear. Thank you for listening. It means a lot.
Best,
Tory

NikiMo

Where on the east coast?
If you are considering Sloan it sounds like your family is on the east coast. If so I know of two expert surgeons. The first is Dr. Luketich who many people have gone to for surgery on this board. The other is my husbands surgeon, Dr. Yang at John Hopkins, we can't say enough about the skills of this surgeon. My husband had a previous nissen fundoplication which made the surgery riskier. We saw a surgeon in Philadelphia who was apprehensive about the surgery and quoted a 5-10% mortality rate. We then consulted with Dr. Yang, he did share that the surgery was riskier than most, but that my husband was young and healthy, he sited a 1-2% mortality rate...sold! I would suggest getting two or three opinions on the surgery. We actually met with three surgeons before making our decision.

I am sorry to hear your uncle is going through this. Does he have adenocarcinoma or squamous cell?

Niki
Wife to Jeff T2N1M0
IL 9/6/11
NED at present

tor1624

NikiMo said:

Where on the east coast?
If you are considering Sloan it sounds like your family is on the east coast. If so I know of two expert surgeons. The first is Dr. Luketich who many people have gone to for surgery on this board. The other is my husbands surgeon, Dr. Yang at John Hopkins, we can't say enough about the skills of this surgeon. My husband had a previous nissen fundoplication which made the surgery riskier. We saw a surgeon in Philadelphia who was apprehensive about the surgery and quoted a 5-10% mortality rate. We then consulted with Dr. Yang, he did share that the surgery was riskier than most, but that my husband was young and healthy, he sited a 1-2% mortality rate...sold! I would suggest getting two or three opinions on the surgery. We actually met with three surgeons before making our decision.

I am sorry to hear your uncle is going through this. Does he have adenocarcinoma or squamous cell?

Niki
Wife to Jeff T2N1M0
IL 9/6/11
NED at present

West Coast actually
Thank you for your quick reply! I am on the East Coast (a block from Sloan actually) but my family is on the West Coast. I am here now in CA with them, right now they are seeing a Dr. Jablons at UCSF who is one of the best. If it's worth the trip, aka we can get the medical records into these doctor's hands and they might have an idea, then they will make the trip to the east coast for sure. My uncle is also from the east coast too and his family has some connections to Sloan, but I think they will try anything and fly him anywhere if the doctor has an idea. This is really wonderful information and I will be sharing this with my family right now. He has squamous cell... I think the prognosis is not as good too, right? Thank you so much again for your help.

tor1624

NikiMo said:

Where on the east coast?
If you are considering Sloan it sounds like your family is on the east coast. If so I know of two expert surgeons. The first is Dr. Luketich who many people have gone to for surgery on this board. The other is my husbands surgeon, Dr. Yang at John Hopkins, we can't say enough about the skills of this surgeon. My husband had a previous nissen fundoplication which made the surgery riskier. We saw a surgeon in Philadelphia who was apprehensive about the surgery and quoted a 5-10% mortality rate. We then consulted with Dr. Yang, he did share that the surgery was riskier than most, but that my husband was young and healthy, he sited a 1-2% mortality rate...sold! I would suggest getting two or three opinions on the surgery. We actually met with three surgeons before making our decision.

I am sorry to hear your uncle is going through this. Does he have adenocarcinoma or squamous cell?

Niki
Wife to Jeff T2N1M0
IL 9/6/11
NED at present

West Coast actually
Thank you for your quick reply! I am on the East Coast (a block from Sloan actually) but my family is on the West Coast. I am here now in CA with them, right now they are seeing a Dr. Jablons at UCSF who is one of the best. If it's worth the trip, aka we can get the medical records into these doctor's hands and they might have an idea, then they will make the trip to the east coast for sure. My uncle is also from the east coast too and his family has some connections to Sloan, but I think they will try anything and fly him anywhere if the doctor has an idea. This is really wonderful information and I will be sharing this with my family right now. He has squamous cell... I think the prognosis is not as good too, right? Thank you so much again for your help.

cher76

My husband was diagnosed
My husband was diagnosed with stage IV EC, so therefore no surgery, but we have been having treatment at MD Anderson under the care of Dr. Jaffer Ajani. you can read about him at the following link. http://faculty.mdanderson.org/Jaffer_Ajani/Default.asp. We self referred through the MD Anderson website, and were able to get in right away. Dr. Ajani has prescribed the chemo regime my husband has been on and we received the actual treatments at home. MD Anderson is world renown, and I would certainly put them on my list of places to go. If you care for any other info let me know.
Cheryl
Wife of Rickie, dx stage IV EC, Oct. 2010

Ginny_B

My mom was ruled inoperable
My mom was ruled inoperable from the get go. Reasons were 1) her age (84), 2) the location of the tumor (near so many vital organs; and 3) it's size (8mm).

We are doing radiation (28) and 5FU chemo pump.

NikiMo

tor1624 said:

West Coast actually
Thank you for your quick reply! I am on the East Coast (a block from Sloan actually) but my family is on the West Coast. I am here now in CA with them, right now they are seeing a Dr. Jablons at UCSF who is one of the best. If it's worth the trip, aka we can get the medical records into these doctor's hands and they might have an idea, then they will make the trip to the east coast for sure. My uncle is also from the east coast too and his family has some connections to Sloan, but I think they will try anything and fly him anywhere if the doctor has an idea. This is really wonderful information and I will be sharing this with my family right now. He has squamous cell... I think the prognosis is not as good too, right? Thank you so much again for your help.

Very welcome
You can find both Doctors office information on their hospitals website, but I can PM you the number for Dr. Yang's office if you like. I think it would be an excellent idea to send your Uncle's scans to both offices. Dr. L is the guru for the minimally invasive esophagectomy. My husband was not comfortable with the laproscopic procedure due to the previous surgery and chose Dr. Yang because he is a top surgeon ( chief of thoracics) and Hopkins is an excellent hospital. Dr. Yang actually did a fellowship at MD. Anderson.

With all of that said MD Anderson is the top ranked cancer center in the country, calling them also would probably be a very good idea.

Best wishes to you, your uncle, and family,

Niki

tor1624

NikiMo said:

Very welcome
You can find both Doctors office information on their hospitals website, but I can PM you the number for Dr. Yang's office if you like. I think it would be an excellent idea to send your Uncle's scans to both offices. Dr. L is the guru for the minimally invasive esophagectomy. My husband was not comfortable with the laproscopic procedure due to the previous surgery and chose Dr. Yang because he is a top surgeon ( chief of thoracics) and Hopkins is an excellent hospital. Dr. Yang actually did a fellowship at MD. Anderson.

With all of that said MD Anderson is the top ranked cancer center in the country, calling them also would probably be a very good idea.

Best wishes to you, your uncle, and family,

Niki

Maybe good news?
They have been working on getting in touch with the right people at MD Anderson for the past few weeks. But after his last appt yesterday with their surgeon (Dr. Jablons) I guess he decided he would operate on him after saying no for the past few months. I started crying when I heard the news. Happy and scared! I am not sure exactly what changed because I know the tumor didn't shrink but I think they realized it may be too late to find another chemo and that there really may be no other options, so I guess they are giving it a shot. I am happy that he thinks he can do it and that something has now been decided and he won't need to travel. His cough is so terrible and uncontrollable that he would definitely not be able to go on a plane that was not private. I will be definitely keeping all of this in mind in case anything were to change. Thank you so much again for your help.

tor1624

cher76 said:

My husband was diagnosed
My husband was diagnosed with stage IV EC, so therefore no surgery, but we have been having treatment at MD Anderson under the care of Dr. Jaffer Ajani. you can read about him at the following link. http://faculty.mdanderson.org/Jaffer_Ajani/Default.asp. We self referred through the MD Anderson website, and were able to get in right away. Dr. Ajani has prescribed the chemo regime my husband has been on and we received the actual treatments at home. MD Anderson is world renown, and I would certainly put them on my list of places to go. If you care for any other info let me know.
Cheryl
Wife of Rickie, dx stage IV EC, Oct. 2010

Thank you
I am sorry to hear about your husband. This makes me very hopeful that this is working for him, thank you so much for sharing.

NikiMo

tor1624 said:

Maybe good news?
They have been working on getting in touch with the right people at MD Anderson for the past few weeks. But after his last appt yesterday with their surgeon (Dr. Jablons) I guess he decided he would operate on him after saying no for the past few months. I started crying when I heard the news. Happy and scared! I am not sure exactly what changed because I know the tumor didn't shrink but I think they realized it may be too late to find another chemo and that there really may be no other options, so I guess they are giving it a shot. I am happy that he thinks he can do it and that something has now been decided and he won't need to travel. His cough is so terrible and uncontrollable that he would definitely not be able to go on a plane that was not private. I will be definitely keeping all of this in mind in case anything were to change. Thank you so much again for your help.

Great news
Hi,

So glad to hear they have decided to go for the surgery and MD Anderson is an excellent hospital! I wish the best for your uncle.

Niki