Hello, I am from India, diagnosed with esophageal cancer

Sanjeev_Sakhuja

Hello,
I am from India, diagnosed with esophageal cancer. Doctors here dont tell the patients or try to answer there questions.
I was diagnosed with esophageal cancer, 3 months ago. No treatment has been started uptil now.
If I go to private doctors, they suggest having an immediate operation when I go to government hospital they suggest radiation followed by operation.
People tell me not to trust private practice doctors, as they are just for money. So I am going for radiation starting 19th of Nov, 2009
Doctor put the feeding tube, so I am not loosing weight anymore.
What am i suppose to do, what are the questions, i should be asking to the doctors. I really dont know besides the fact, that time is passing by and may be it is getting late to do anything.
If anybody has any sugestion, please do tell me
regards
Sanjeev

WildGoose7

Sanjeev - Please Read and Heed William66
Sanjeev
I'm sorry to hear of your esophageal cancer situation. Your location does not make things easier.

As for my title to your query, PLEASE believe me when I urge you to read and heed my new and good friend William66. Short of having a very experienced MD as moderator, Bill is as good as it gets. He's been through the crucible of this fight before.

Me - I was diagnosed on July 24 of this year as T2N1M0 squamous cell cancer at the midpoint of my esophagus, not the junction of the esophagus and stomach. I have completed 6 weeks of pre-op chemothrepy with concurrent radiation; we from a military background refer to this as a "force multiplier" where both at the same time are more effective that just one of either singularly. I've been off chemo and radiation for almost a month now and my PET scan is to take place this Thursday. I'll then be re-staged, with the treatment plan adjusted as needed.

My very best wishes for success in your cancer battle.

Mike the Wild Goose

OncoSurge

some thoughts
Our prayers go out to you.

First, I admit I have not read through all of William's post.

Now, I will give you some general thoughts. The key is the stage of your tumor/cancer and location. I know not what you have available in your country. Over here, we we often use a combination of staging approaches. This includes upper endoscopy with ultrasound evaluation and sampling of suspicious lymph nodes, CT scan, PET scan, and some will still do an exploratory laparoscopy/thorocoscopy lymph node sampling.

In general, neo-adjuvant therapy is a very common and useful first step in treating esophageal cancer. This can often result in a "locally unresectable"cancer being converted into a resectable cancer. Once completing a set amount of neoadjuvant therapy, folks are re-staged. Presuming all things look good at restage and individual's health is good, you should have an esophagectomy.

I believe Wiliam left some website links in his response and I encourage you to check those sites out as well.

OS

K_ann1015

OncoSurge said:

some thoughts
Our prayers go out to you.

First, I admit I have not read through all of William's post.

Now, I will give you some general thoughts. The key is the stage of your tumor/cancer and location. I know not what you have available in your country. Over here, we we often use a combination of staging approaches. This includes upper endoscopy with ultrasound evaluation and sampling of suspicious lymph nodes, CT scan, PET scan, and some will still do an exploratory laparoscopy/thorocoscopy lymph node sampling.

In general, neo-adjuvant therapy is a very common and useful first step in treating esophageal cancer. This can often result in a "locally unresectable"cancer being converted into a resectable cancer. Once completing a set amount of neoadjuvant therapy, folks are re-staged. Presuming all things look good at restage and individual's health is good, you should have an esophagectomy.

I believe Wiliam left some website links in his response and I encourage you to check those sites out as well.

OS

some may benefit from layman's terms
thanks OS---
but I feel that Sanjeev (and many of the new visitors to this site may want the layman's terms--)

--especially if from another country and possibly English is a second language??? For example...


Stage: ( is a descriptor -usually numbers I to IV- of how much the cancer has spread
upper endoscopy:

exploratory laproscopy / thorocoscopy lymph node sampling: (I’ll leave for you to fill in...)

neo-adjuvant therapy: ( Chemotherapy given prior to the surgical procedure.  It may be given to attempt to shrink the cancer so that the surgical procedure may not need to be as extensive.)

unresectable: (unable to remove with surgery)
re-staged: (determining the level of advancement or improvement of the cancer after initial treatment)

even esophagectomy! (removal of part of all of the esophagus)

since I have been through this process with a family member and have a medical background, I know what these terms mean—but know how overwhelming it was for my parents who live in this country and speak the language. Does any one else feel this way? That being said---I always like to hear a medical professional’s opinion and input... Thanks again OS!

Unknown

This comment has been removed by the Moderator

OncoSurge

K_ann1015 said:

some may benefit from layman's terms
thanks OS---
but I feel that Sanjeev (and many of the new visitors to this site may want the layman's terms--)

--especially if from another country and possibly English is a second language??? For example...


Stage: ( is a descriptor -usually numbers I to IV- of how much the cancer has spread
upper endoscopy:

exploratory laproscopy / thorocoscopy lymph node sampling: (I’ll leave for you to fill in...)

neo-adjuvant therapy: ( Chemotherapy given prior to the surgical procedure.  It may be given to attempt to shrink the cancer so that the surgical procedure may not need to be as extensive.)

unresectable: (unable to remove with surgery)
re-staged: (determining the level of advancement or improvement of the cancer after initial treatment)

even esophagectomy! (removal of part of all of the esophagus)

since I have been through this process with a family member and have a medical background, I know what these terms mean—but know how overwhelming it was for my parents who live in this country and speak the language. Does any one else feel this way? That being said---I always like to hear a medical professional’s opinion and input... Thanks again OS!

You are correct
Thank you K_Ann, you are absolutely correct. I apologize if some of the terminology I used adds to any confusion. I will try to respond to some of your points for clarification.

For stage, I refer to Williams long post. I glanced through it and believe he has listed the TNM and AJCC approaches/classifications to staging. He also has some web-links.
____________________________________________
upper endoscopy:
____________________________________________

This is were an endoscope, basically a camera with a long flexible, fiberoptic shaft is passed down through you mouth and into you esophagus and stomach. Often referred to as EGD or EsophagoGastroDuodenoscopy. There are many different versions of the scope. Some have special tips with an ultrasound probe. This allows the esophagus and surrounding tissues to be examined. It can assess the depth of the tumor. It can identify enlarged or abnormal lymph nodes that may be in proximity to the esophagus. This image from the ultrasound can guide a needle into the surrounding tissues/lymph nodes to obtain samples/biopsies.

____________________________________________
"exploratory laproscopy / thorocoscopy lymph node sampling: (I’ll leave for you to fill in...)"
____________________________________________

As for the above excerpt, some medical centers/universities/hospitals, physicians will sometimes perform laparoscopic surgery, using small incisions, and camera scope to examine the inside of the abdomen. They will sometimes just look around to see if small tumor spots and/or implants are present. They will sometimes focus on areas of lymph nodes. Thus, taking pieces of lymph nodes to see if the cancer is in the nodes. With some cancers in general, a surgeon may fill the abdomen with saline/irrigation, then drain it and send it for analysis to see if there are small amounts of microscopic spread tumor cells in the abdomen.

Thorocoscopy is the same as Video Assisted Thoracoscopic Surgery (VATS). Similar to the explanation of laparoscopy, similar things may be done in the chest.

As for the rest, I think K_Ann and William have explained it fairly well.
Again, I apologize if my earlier responses may have added confusion.

OS

MAE66

OncoSurge said:

You are correct
Thank you K_Ann, you are absolutely correct. I apologize if some of the terminology I used adds to any confusion. I will try to respond to some of your points for clarification.

For stage, I refer to Williams long post. I glanced through it and believe he has listed the TNM and AJCC approaches/classifications to staging. He also has some web-links.
____________________________________________
upper endoscopy:
____________________________________________

This is were an endoscope, basically a camera with a long flexible, fiberoptic shaft is passed down through you mouth and into you esophagus and stomach. Often referred to as EGD or EsophagoGastroDuodenoscopy. There are many different versions of the scope. Some have special tips with an ultrasound probe. This allows the esophagus and surrounding tissues to be examined. It can assess the depth of the tumor. It can identify enlarged or abnormal lymph nodes that may be in proximity to the esophagus. This image from the ultrasound can guide a needle into the surrounding tissues/lymph nodes to obtain samples/biopsies.

____________________________________________
"exploratory laproscopy / thorocoscopy lymph node sampling: (I’ll leave for you to fill in...)"
____________________________________________

As for the above excerpt, some medical centers/universities/hospitals, physicians will sometimes perform laparoscopic surgery, using small incisions, and camera scope to examine the inside of the abdomen. They will sometimes just look around to see if small tumor spots and/or implants are present. They will sometimes focus on areas of lymph nodes. Thus, taking pieces of lymph nodes to see if the cancer is in the nodes. With some cancers in general, a surgeon may fill the abdomen with saline/irrigation, then drain it and send it for analysis to see if there are small amounts of microscopic spread tumor cells in the abdomen.

Thorocoscopy is the same as Video Assisted Thoracoscopic Surgery (VATS). Similar to the explanation of laparoscopy, similar things may be done in the chest.

As for the rest, I think K_Ann and William have explained it fairly well.
Again, I apologize if my earlier responses may have added confusion.

OS

Chemo and radiation only choice?
I have read and re read William’s post and have the feeling we are missing something. When my husband was initially diagnosed we were told he is considered stage IV since they found esophageal cancer cells in fibrosis which had blocked his ureters (tubes coming down from kidneys) and he was NOT a candidate for surgery. We were also told that once you were staged, that is what you were forever and you were classified into a group depending on how you responded to treatment (partial response, no response, further spread and, complete response). Does this sound famillar to anyone?

So far 2 PET scans, an MRI and a couple of CT scans have shown no cancer in the lymph nodes or any other organ. The radiation oncologist told us to wait 6 to 8 weeks to see what the treatment had accomplished. As of the last PET, one week out of radiation, there was no change to the size of the tumor in the esophagus but nothing “lit up”. Is there anyone out there with stage IV who was able to have surgery, and did it help?

Susan

mumphy

MAE66 said:

Chemo and radiation only choice?
I have read and re read William’s post and have the feeling we are missing something. When my husband was initially diagnosed we were told he is considered stage IV since they found esophageal cancer cells in fibrosis which had blocked his ureters (tubes coming down from kidneys) and he was NOT a candidate for surgery. We were also told that once you were staged, that is what you were forever and you were classified into a group depending on how you responded to treatment (partial response, no response, further spread and, complete response). Does this sound famillar to anyone?

So far 2 PET scans, an MRI and a couple of CT scans have shown no cancer in the lymph nodes or any other organ. The radiation oncologist told us to wait 6 to 8 weeks to see what the treatment had accomplished. As of the last PET, one week out of radiation, there was no change to the size of the tumor in the esophagus but nothing “lit up”. Is there anyone out there with stage IV who was able to have surgery, and did it help?

Susan

Hi Mae66
Hi Susan,

First of all I don't know where you live but you need to get another opinion right away!
My husband was diagnosed in May with EC stageIV, He had no mets to any of his major organs
and did have mets to his lymphnodes in his chest and right next to the primary tumor.
He went through 21 days of continous chemo with a pump and had several rounds of chemo at
the clinic. The chemo was very hard on him and he did have a couple of set backs from it.

All along we were also being followed by Dr. James Luketich who just so happened to be William 66's Dr. 7 yrs ago. He watched my husbands progress during chemo and when we still
had 2 more chemo appts to go they said lets get a PET scan and see where we are and low and behold his tumor had shunk enough for them to do surgery. He had a minimal invasive esophagectomy on Oct.19th and is home and doing well. HE is eating normal food only smaller portions and did have a small set back with pneumonia but all in all is doing very well..Thats what his home care nurse said today!!!He is no longer on a feeding tube and has to eat and gain weight.

We will have to have additional chemo and radiation due to the fact that they want to make sure that the lymphnodes that they didn't get during surgery are all dead and also to make sure that none of the little buggers got loose and settle some place else.

My point being I know that stage IV EC IS OPERABLE!!! I know of at least 2 other people on this site who were diagnosed with stage IV and one just went home from the hospital after having surgery and another is waiting for surgery!!!

FIND ANOTHER DR. GET ANOTHER OPINION. I LIVE IN PITTSBURGH MY HUSBAND IS BEING TREATED AT THE HILLMAN CANCER CENTER IN SHADYSIDE IN PITTSBURGH. CALL THE AMERICAN CANCER SOCIETY ASK
IF THEY KNOW OF ANY PLACE IN YOUR AREA THAT ARE DOING ANY CLINICAL STUDIES. GO ON LINE AND
LOOK UP CLINICAL STUDIES FOR STAGE IV EC.

DO NOT GIVE IN OR GIVE UP HOPE!!!! ASK, ASK AND ASK SOME MORE!!!!
I HOPE THIS HELPS YOU!!
GOD BLESS
KATH

OncoSurge

MAE66 said:

Chemo and radiation only choice?
I have read and re read William’s post and have the feeling we are missing something. When my husband was initially diagnosed we were told he is considered stage IV since they found esophageal cancer cells in fibrosis which had blocked his ureters (tubes coming down from kidneys) and he was NOT a candidate for surgery. We were also told that once you were staged, that is what you were forever and you were classified into a group depending on how you responded to treatment (partial response, no response, further spread and, complete response). Does this sound famillar to anyone?

So far 2 PET scans, an MRI and a couple of CT scans have shown no cancer in the lymph nodes or any other organ. The radiation oncologist told us to wait 6 to 8 weeks to see what the treatment had accomplished. As of the last PET, one week out of radiation, there was no change to the size of the tumor in the esophagus but nothing “lit up”. Is there anyone out there with stage IV who was able to have surgery, and did it help?

Susan

surgery
___________________________________
I have .... the feeling we are missing something. When my husband was initially diagnosed ...they found esophageal cancer cells in fibrosis which had blocked his ureters (tubes coming down from kidneys) and he was NOT a candidate for surgery.

...Is there anyone out there with stage IV who was able to have surgery, and did it help?
___________________________________

Esophagectomy has high morbidity and significant risk. The purpose would be in the hopes of removing all remaining cancer by undertaking this big operation. I think the issue with your husband is the identification/confirmation of "distal" spread of his cancer. The cancer was found outside of his chest and within the renal/kidney system. Thus, removing the esophagus does not pose a reasonable expectation that it will remove all remaining cancer and/or have a curative benefit. The manner in which cancers spread... and it varies depending on cancer types, leaves a reasonable consideration that there is additional cancer (even on a small/microscopic level) residing in tissues between the primary tumor in the esophagus and the distal organ it metastasized to... like the kidneys. If it spreads to lymph nodes next to the esophagus, we take the nodes and the tissue between the nodes and esophagus out at the time of esophagectomy. This is an "en-bloc" resection.

I always encourage second opinions.