Why NO endoscopic ultrasound
Jerry- endoscopic ultrasound is important for staging when the disease appears to be localized, not when you already know that it is metastatic and stage IV.
Her-2 neu testing can be performed for gastric cancers to see if a drug called Herceptin may be able to be used to treat the disease.
What you need initially, however, is a combination of both localized therapy to keep the esophagus from completely obstructing, and systemic therapy to control the metastases and make the radiation more effective. We are going to check the Her-2 neu status but that will play a role after initial radiation therapy to see if Herceptin is an option for disease control (not cure). Most GEJ tumors are negative however.
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So it sounds like even BEFORE the PET scans came in, he had pretty much made up his mind it was Stage IVb. But he has never said Stage IVa or b, or given me a stage, as in T4N1M1 or whatever. Guess he figures I don't need to know. Bovine feces on that!
--Jerry
Comments
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Jerry don't give up yet.
Jerry,
I know it may sound like your first doc is convinced but hold out for the second opinion. Though he is right that MOST GEJ cancers are indeed HER2-Nue, that isn't ALWAYS the case. So you can see that he doesn't think the EUS is useful at this point, the new doc might think otherwise. As for the Stage IVb or IVa, I think they have quit using the a&b separations as it is considered that all IV's are incurable. I will hold out hope and pray that the second opinion comes out differently my friend. Though, with Metastatic disease, it certainly looks unlikely. You and your wife should prepare for the worst and hope for the best going forward.
Hugs to You and your Wife,
-Michelle0 -
Surprised by nothing...LilChemoSmoker said:Jerry don't give up yet.
Jerry,
I know it may sound like your first doc is convinced but hold out for the second opinion. Though he is right that MOST GEJ cancers are indeed HER2-Nue, that isn't ALWAYS the case. So you can see that he doesn't think the EUS is useful at this point, the new doc might think otherwise. As for the Stage IVb or IVa, I think they have quit using the a&b separations as it is considered that all IV's are incurable. I will hold out hope and pray that the second opinion comes out differently my friend. Though, with Metastatic disease, it certainly looks unlikely. You and your wife should prepare for the worst and hope for the best going forward.
Hugs to You and your Wife,
-Michelle
It probably is terminal, but I don't believe in giving up. He doesn't think that a Surgeon is the right person to see, but over there at UofW they work as a team. I just was looking for an entry point.
So, I ask him to refer me to the right people at the U.
--Jerry0 -
Good Job!jgwright said:Surprised by nothing...
It probably is terminal, but I don't believe in giving up. He doesn't think that a Surgeon is the right person to see, but over there at UofW they work as a team. I just was looking for an entry point.
So, I ask him to refer me to the right people at the U.
--Jerry
I think you have gone the right way! I do know that every doc is different, and though things don't look very positive, having the never give up attitude will carry you far in this fight Jerry! My opinion is that Death IS a part of Life and even if things turn out to be terminal, you have MUCH life to live! So start LIVING! Not to say you aren't, but it sure will make a person see things in a different light.
Love to you my friend!
-Michelle0 -
No Ultrasound
I was T3N1M0 and I also asked why I did not have an Ultrasound. I was told that the results of the CT and PET scans were sufficient to identify my tumor, its location and to determine my treatment plan (chemo/radiation & surgery). The ultrasound would have told me how much the tumor breached the wall of the esophagus. I was told that they would determine final staging at surgery and that results of an Ultrasound would not change the treatment plan.
Given your stage IV they may feel they have enough with the tests so far to determine your treatment plan.
In any place, you must be confident that your oncologyst knows his stuff and has properly diagnosed you. If you have any doubts, get a second opinion.
Jim0 -
After the Gold RushGatoraid said:No Ultrasound
I was T3N1M0 and I also asked why I did not have an Ultrasound. I was told that the results of the CT and PET scans were sufficient to identify my tumor, its location and to determine my treatment plan (chemo/radiation & surgery). The ultrasound would have told me how much the tumor breached the wall of the esophagus. I was told that they would determine final staging at surgery and that results of an Ultrasound would not change the treatment plan.
Given your stage IV they may feel they have enough with the tests so far to determine your treatment plan.
In any place, you must be confident that your oncologyst knows his stuff and has properly diagnosed you. If you have any doubts, get a second opinion.
Jim
Well, this coming Thursday I'll have an MRI for my head and spine, and then later a visit with the Radiation Oncologist for a simulation and tattooing, as well as having him look at the MRI. So. Away we go. And after that I should have enough data for a trip to Seattle to see them guys over there.
--Jerry0 -
Creative CommonsGinny_B said:Bovine feces!!! I love that.
Bovine feces!!! I love that. I'll have to remember that.
There is so much to learn about EC. It's mind-boggling and completely overwhelming. We just plod along learning as we go setting the stage for others to follow.
Everything I do and say around here is registered with Creative Commons for EVERYONE to use freely. Yeah, I just a giving guy. Anyone want a slightly used esophageal cancer??
No? Afraid of that...
--Jerry0 -
Jerry, Just read your
Jerry, Just read your profile. Yor are a perfect example of why we have so many with stage IV EC. The doctors do not seem to be aware of how widespread this is becoming. I could not beleive the time lapses from the first time you had a problem until now. You had six months before a diagnosis. EC is a rapidly spreading cancer. Treatment should of started a few months ago.
You do need to know your staging.I hope you will get some answers soon. Welcome to our family. We hope we can be an encouragement and help in any way we can, to you and your wife.
Sandra0 -
Hi Theresandy1943 said:Jerry, Just read your
Jerry, Just read your profile. Yor are a perfect example of why we have so many with stage IV EC. The doctors do not seem to be aware of how widespread this is becoming. I could not beleive the time lapses from the first time you had a problem until now. You had six months before a diagnosis. EC is a rapidly spreading cancer. Treatment should of started a few months ago.
You do need to know your staging.I hope you will get some answers soon. Welcome to our family. We hope we can be an encouragement and help in any way we can, to you and your wife.
Sandra
I am so glad I found this place. A central location of people who know what I'm going through, and who have been there, either they, or their loved ones. Thanks for the welcome, Sandy. I'll put you on the friendship list as soon as I figure out how.
--Jerry0 -
welcome to the boardjgwright said:Hi There
I am so glad I found this place. A central location of people who know what I'm going through, and who have been there, either they, or their loved ones. Thanks for the welcome, Sandy. I'll put you on the friendship list as soon as I figure out how.
--Jerry
Hi Jerry,
I was supposed to have in situ and maybe even just scoopable EC squamous type. So I thought I was so lucky till they did the EUS ultrasound and then I went from in situ to Stage 2 to Stage 3 with a bad node in a matter of 48 hrs. So I think you are right to check with another dr and get a second opinion because my CT PET scans were completely inaccurate, none of the cancer showed up and I had false positives all over the place including as you nicely put it some bovine or human stuff that lit up like a Xmas tree resulting in a colonoscopy which was false positive too. So Jerry we all welcome you here where we don't pile the stuff too deep and try to help. Good luck on a more precise dx. take care,
Donna700 -
Stagingjgwright said:Surprised by nothing...
It probably is terminal, but I don't believe in giving up. He doesn't think that a Surgeon is the right person to see, but over there at UofW they work as a team. I just was looking for an entry point.
So, I ask him to refer me to the right people at the U.
--Jerry
Hi Jerry, my husband was diagnosised on August 2,2011 with stage 4 EC when he went in for the EC/Stomach surgery. He had EUS, endoscope, PetScan, CT-Scan, and none of them showed cancer had spread. His biospy was also checked for the Hep cell but was negative. Dr never said A or B in my husbands staging he just said it wasnt curable, but could be stopped or slowed down with chemo. Chemo was the only option offerd. He had 4 chemo treatments and CT-Scan showed tumor in esaphagus has shrunk and the cancer in stomach is shrinking. No other cancer cells showed anywhere. Finally some good news. I hope this helped. You are in our prayers.
Chrissy0 -
No MRI results yetDonna70 said:welcome to the board
Hi Jerry,
I was supposed to have in situ and maybe even just scoopable EC squamous type. So I thought I was so lucky till they did the EUS ultrasound and then I went from in situ to Stage 2 to Stage 3 with a bad node in a matter of 48 hrs. So I think you are right to check with another dr and get a second opinion because my CT PET scans were completely inaccurate, none of the cancer showed up and I had false positives all over the place including as you nicely put it some bovine or human stuff that lit up like a Xmas tree resulting in a colonoscopy which was false positive too. So Jerry we all welcome you here where we don't pile the stuff too deep and try to help. Good luck on a more precise dx. take care,
Donna70
Okay, had the MRI on Thursday, but haven't heard anything from the original oncologist, except to wish me well in my visit to the Fred Hutchinson Cancer Center at the UW.
Arrrrgh...
--Jerry0
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