How are nodes checked?
If it has penetrated the wall, is there any point in anything other than patient comfort?
If the patient goes for a second (or third) opinion, how is this done? Another biopsy? Do they just review the biopsy results and look at the film and then agree or not?
Maybe I should just go through these testing stages fat, dumb, and happy and ask questions later. I just have all these questions going around my head - they pop in when I least expect them. I'm in the bird room cleaning parrot cages and then it's what if this, what about that, how come this, and on and on go the questions in my head.
If I am here to help my mom, how can I encourage her to do all these things when I know it will be terribly hard on her. On the other hand, I don't want her not to try; not to hope.
The last question I have is sort of twofold. If someone has inoperable adenocarcinoma that has penetrated the wall and is in the nodes, how much time do you think that person has? 6 months? 2 years? I don't know how fast adeno moves. Part II to that question is, dare I ask that question when we are with a doc getting results? My guess is probably no one knows for sure, but I do think that doctors have seen enough of this type of cancer to know approx how long their patients survive given whatever treatment they opt for... or not.
I know these are probably wacky questions from left field. I ought to just go sit down with a Diet Coke on the rocks and pray instead of think.
It's time to call mom.
Comments
-
What tests show and what they do
Ginny,
First off, those are some of the most NORMAL and often asked questions that there are around this type of cancer, or any!!! You MUST go easy on yourself and ask away!
If the cancer has spread out of the area of the original tumor (regional) then it is up to the doctors to determine HOW MANY nodes it has spread to, and how far out. Only they can do this, and they do it with several methods combined usually.
They may do a long needle biopsy, testing individual nodes to see if they are positive for cancer cells. They will also do a CT scan and possibly a PET scan. The CT can show where the cancer is or has spread to. The PET scan lights up where there is high metabolic activity after they inject a dye with glucose in it. Since cancer cells metabolize so fast, they will "light up" unlike normal cells, and show where the cancer is.
As for second and third opinions, some doctors do their own testing, almost all of them will want the pathology and reports from the previous doctors and they never mind sharing these, and still some just review the results of the test, as there is no need to repeat them unless they think something was missed, and then they offer their options for treatment. Some doctors will offer options that others will not despite the same test results being used. Larger cancer centers will offer you more options and better choices. We were told by one oncologist that they would not do radiation, the next said they would. The third offered surgery, until they had their own test results done. It really depends on the doctor and the size of the cancer center. Get a second or third opinion if you can. This is always advised, usually by the oncologists themselves and they never mind you getting them. They like to share the burden I believe.
This is a rather oversimplified version of things, but it is basically how they test and what they look for. After these types of tests, they can then start to do staging and tell you some idea of how far the progression of the cancer is and therefor what treatments are options, whether it be chemo and surgery, or just chemo, or just palliative care. You MUST wait for the staging and all these tests and TRY to relax and breath (and ask ALL of the questions you want here in the meantime!) until then.
I hope this helps.
God bless you.
You are doing great!
-Eric0 -
Eric is correct
Lots of testing to determine the stage and possible treatments. I asked every doctor that I met with what my odds were. The answers were all over the board. Why did I ask? I don't know. I heard 5 year odds of 15-40% but it all comes down to everyone is a statistic of one. My radiation doctor told me that everyone dies eventually but it wasn't EC that would kill me. I liked hearing that.
I think that dentists and chiropractors are salespersons but I believe in doctors. For 13 years I was a stockbroker so I have nothing against salespersons. I know cancer is big business but I for one am thankful for the chance to be cured.
You are going to be helping your mom alot just being there to remember all the info and being able to say "hey, its not as bad as we thought".
You need to ask those questions. Always have a little notebook with you so when you think of a question you can write it down for later research.
The standard of care in the US is the big three...chemo/radiation/surgery. Its a tough road but very much do-able.
Jim0 -
Ginny, the most likely next step is CT scan
This CT will identify any nodes that are clinically "abnormal", usually if it's 1 cm or larger it's considered abnormal. If any are identified, then a PET scan will be ordered to see if any of the nodes are "hot", or metabolically active, because nodes can be enlarged for any number of reasons.
Because a Pet scan is not conclusive ( hot spots can be false positives), if any critical nodes, i.e., distant nodes are hot, they will be biopsied using fine needle aspiration if they are close to the surface, or other surgical procedure.
An endoscopic ultrasound may be ordered to determine the size and precise location of the tumor (T number), and any surrounding nodes can often be biopsies during this procedure, again using fine needle aspiration.
If, however, other tests have already positively identified distant node involvement, the ultrasound can be skipped, as it's information at that point is unnecessary. (If it's stage IV, doesn't matter what the T number is.
All this is likely to take a couple weeks, but all these tests are absolutely necessary for proper staging. The more you know, the better the docs will be able to determine a treatment plan.
If any of these steps are skipped, you should be asking why.
I will be sending positive thoughts to you as you go through this process.
Lu0 -
The 1st biopsy results wereCallaloo said:Ginny, the most likely next step is CT scan
This CT will identify any nodes that are clinically "abnormal", usually if it's 1 cm or larger it's considered abnormal. If any are identified, then a PET scan will be ordered to see if any of the nodes are "hot", or metabolically active, because nodes can be enlarged for any number of reasons.
Because a Pet scan is not conclusive ( hot spots can be false positives), if any critical nodes, i.e., distant nodes are hot, they will be biopsied using fine needle aspiration if they are close to the surface, or other surgical procedure.
An endoscopic ultrasound may be ordered to determine the size and precise location of the tumor (T number), and any surrounding nodes can often be biopsies during this procedure, again using fine needle aspiration.
If, however, other tests have already positively identified distant node involvement, the ultrasound can be skipped, as it's information at that point is unnecessary. (If it's stage IV, doesn't matter what the T number is.
All this is likely to take a couple weeks, but all these tests are absolutely necessary for proper staging. The more you know, the better the docs will be able to determine a treatment plan.
If any of these steps are skipped, you should be asking why.
I will be sending positive thoughts to you as you go through this process.
Lu
The 1st biopsy results were received Thursday. The CT was the next day. Tomorrow we go in for the CT scan results. I suspect this will tell us pretty much the whole picture. Mom said she's sure it has spread.0 -
Waiting to hear....Ginny_B said:The 1st biopsy results were
The 1st biopsy results were received Thursday. The CT was the next day. Tomorrow we go in for the CT scan results. I suspect this will tell us pretty much the whole picture. Mom said she's sure it has spread.
Ginny,
Waiting eagerly to hear how the diagnosis and staging went! Waiting WITH you to hear.
Hang in there. We are praying for you.
-Eric0 -
Ginny,
Usually, when the
Ginny,
Usually, when the first biopsy is taken of the primary tumor enough tissue is taken and it is saved for future use. There are various tumor tests that can be performed to assist in targeted treatment depending on the genetic markers in the tumor.
Also, just because the tumor has breached the wall of the Esophagous does not mean all hope is lost --- the real determinative factor is has the cancer spread to distant organs or lymph nodes. Many here have had successful surgeries and are living productive lives even though the tumor was in the outer wall, and had spread to lymph nodes. This is in no way meant to minimize the serious nature of this cancer, it is a monster, but there is hope.
I will keep you in my prayers as you wait for the scan results and begin making treatment decisions.
Best,
Cindy0 -
How much time?unclaw2002 said:Ginny,
Usually, when the
Ginny,
Usually, when the first biopsy is taken of the primary tumor enough tissue is taken and it is saved for future use. There are various tumor tests that can be performed to assist in targeted treatment depending on the genetic markers in the tumor.
Also, just because the tumor has breached the wall of the Esophagous does not mean all hope is lost --- the real determinative factor is has the cancer spread to distant organs or lymph nodes. Many here have had successful surgeries and are living productive lives even though the tumor was in the outer wall, and had spread to lymph nodes. This is in no way meant to minimize the serious nature of this cancer, it is a monster, but there is hope.
I will keep you in my prayers as you wait for the scan results and begin making treatment decisions.
Best,
Cindy
Ginny,
I see many others have answered the questions on testing and staging, but I didn't see any comments on asking about how much time she has.
Here's my thoughts--and they are just that, my thoughts. My husband was diagnosed in late June as Stage IV with distant lymph nodes involved. The oncologist explained what that meant but did not offer nor did my husband ask about time. And why would they? No one knows this. The statistics aren't good, but everyone is a statistic of one and I've seen on these and other boards where some only survived 3 months and some are going on 9 years as Stage IVs. So, if the patient chooses to ask, fine. And you may need to ask for a general idea for planning purposes since you don't live with your mom. But if she doesn't choose to ask, and you want to know a guesstimate, just call when she isn't around. And be sure your name and contact information is on file with all her doctors, giving them permission to discuss her case with you.
You're both in my thoughts and prayers. The initial testing and staging is just overwhelming on top of a staggering diagnosis. Just keep trying to take one step at a time. Feel free to ask questions any time here and take our opinions as just that--the opinions of one who is walking this path.
Angie0 -
Ginny,AngieD said:How much time?
Ginny,
I see many others have answered the questions on testing and staging, but I didn't see any comments on asking about how much time she has.
Here's my thoughts--and they are just that, my thoughts. My husband was diagnosed in late June as Stage IV with distant lymph nodes involved. The oncologist explained what that meant but did not offer nor did my husband ask about time. And why would they? No one knows this. The statistics aren't good, but everyone is a statistic of one and I've seen on these and other boards where some only survived 3 months and some are going on 9 years as Stage IVs. So, if the patient chooses to ask, fine. And you may need to ask for a general idea for planning purposes since you don't live with your mom. But if she doesn't choose to ask, and you want to know a guesstimate, just call when she isn't around. And be sure your name and contact information is on file with all her doctors, giving them permission to discuss her case with you.
You're both in my thoughts and prayers. The initial testing and staging is just overwhelming on top of a staggering diagnosis. Just keep trying to take one step at a time. Feel free to ask questions any time here and take our opinions as just that--the opinions of one who is walking this path.
Angie
My husband, diagnosed
Ginny,
My husband, diagnosed stage IV in October 2010, did not put the question of how much time to his doctor as we realized everyone is different. We did have one doctor that explained it in a way that helped us to keep up our hope. He said that if he told us Rickie had a 20 percent chance of survival that would mean that if you lined up 100 people and numbered them all 1-100, then numbers 1-20 would survive. If you were number 1 through 20 your chance of survival would be 100%. So, you see, as with all statistics, it is just a matter of how you interpret those statistics. We hear reports that the unemployment rate is 9%, but turn that around and that means that the employment rate is 91%. That doesn't sound quite as bad to me. So it is all in how you want to look at it. I myself choose to look at the positive side and keep hope alive.
Cheryl
Wife of Rickie, dx EC stage IV, with mets to bones, October 20100 -
Thank you everyone. I'm
Thank you everyone. I'm getting ready for my daily 3 mile walk. Feeling apprehensive about today's results appt. I made my mom mad last night - didn't mean to, but hopefully she'll be over it by the time I get there this morning. I have decided that it's best for me not to disagree with my mom. If she says it's blue, then it's blue. If she says the docs aren't sure if it's cancer, then they're not sure. I just won't disagree. She seems to think that this test is going to confirm or disprove the biopsy results. I told her it is not to disprove cancer but to determine if it has spread. Then she said I was mean and too blunt. She said that we'll know all the answers at today's appt. I told her there will likely be more tests. I think I need to accept that she doesn't accept certain facts and just leave it at that. She's always been one of denial. If there is any bad news to be reported she turned off - didn't want to hear it and always said it would change. It is also true that I am a very straight-forward person - I don't mince words. It is what it is kinda person. For me, that's easier to swallow. I'll mellow out when I'm around her - or try hard to mellow.
She will not listen then will ask me to explain what was just said. When my brother told her about his wife's research doc who researches cancer to find it's best chemo cocktail, she told me that she didn't want to hear it so asked me to find out what he was talking about. Brother and I had already talked about it so I explained it to her again. She was unhappy having to go through another biopsy since this doc needs tissue that is less than 24 hours old.
I've babbled. I'll report back as soon as I get the CT scan results. Sigh...0 -
Coping skills...Ginny_B said:Thank you everyone. I'm
Thank you everyone. I'm getting ready for my daily 3 mile walk. Feeling apprehensive about today's results appt. I made my mom mad last night - didn't mean to, but hopefully she'll be over it by the time I get there this morning. I have decided that it's best for me not to disagree with my mom. If she says it's blue, then it's blue. If she says the docs aren't sure if it's cancer, then they're not sure. I just won't disagree. She seems to think that this test is going to confirm or disprove the biopsy results. I told her it is not to disprove cancer but to determine if it has spread. Then she said I was mean and too blunt. She said that we'll know all the answers at today's appt. I told her there will likely be more tests. I think I need to accept that she doesn't accept certain facts and just leave it at that. She's always been one of denial. If there is any bad news to be reported she turned off - didn't want to hear it and always said it would change. It is also true that I am a very straight-forward person - I don't mince words. It is what it is kinda person. For me, that's easier to swallow. I'll mellow out when I'm around her - or try hard to mellow.
She will not listen then will ask me to explain what was just said. When my brother told her about his wife's research doc who researches cancer to find it's best chemo cocktail, she told me that she didn't want to hear it so asked me to find out what he was talking about. Brother and I had already talked about it so I explained it to her again. She was unhappy having to go through another biopsy since this doc needs tissue that is less than 24 hours old.
I've babbled. I'll report back as soon as I get the CT scan results. Sigh...
Ginny,
As you know we all have our own way of dealing with things; especially BAD things like news and health.
If denial helps your mom cope, for now, and that is her optimism, it may be keeping her going, giving her the strength to fight or maybe by not knowing, she will fair better and just do what the doctors say. Who knows.
Don't beat yourself up. You should have SEEN me and Michelle in the beginning of all this after diagnosis. We were BOTH so angry with the CANCER, but at times it came out directed at each other. I never had any denial, past the 5 seconds after my GI doc told me I was terminal, but as I said, we all cope differently.
I think you are doing great. Hang in there and we are all waiting to hear those results when you have time. And yes, they probably WILL want more tests! Shhhhh! LOL
God bless you. Sending love and hugs to you,
-Eric0 -
Thought after speaking with my husbandGinny_B said:Thank you everyone. I'm
Thank you everyone. I'm getting ready for my daily 3 mile walk. Feeling apprehensive about today's results appt. I made my mom mad last night - didn't mean to, but hopefully she'll be over it by the time I get there this morning. I have decided that it's best for me not to disagree with my mom. If she says it's blue, then it's blue. If she says the docs aren't sure if it's cancer, then they're not sure. I just won't disagree. She seems to think that this test is going to confirm or disprove the biopsy results. I told her it is not to disprove cancer but to determine if it has spread. Then she said I was mean and too blunt. She said that we'll know all the answers at today's appt. I told her there will likely be more tests. I think I need to accept that she doesn't accept certain facts and just leave it at that. She's always been one of denial. If there is any bad news to be reported she turned off - didn't want to hear it and always said it would change. It is also true that I am a very straight-forward person - I don't mince words. It is what it is kinda person. For me, that's easier to swallow. I'll mellow out when I'm around her - or try hard to mellow.
She will not listen then will ask me to explain what was just said. When my brother told her about his wife's research doc who researches cancer to find it's best chemo cocktail, she told me that she didn't want to hear it so asked me to find out what he was talking about. Brother and I had already talked about it so I explained it to her again. She was unhappy having to go through another biopsy since this doc needs tissue that is less than 24 hours old.
I've babbled. I'll report back as soon as I get the CT scan results. Sigh...
Ginny,
Nick told me one reason he was adamant that he didn't want a 2nd opinion was because it was so damn hard to hear the words "you've got cancer" one time. He really didn't want to hear them a 2nd time. All he wanted after hearing those scary words was a plan to deal with things and someone that could keep his pain handled while dealing.
I didn't understand his reasoning for not wanting a 2nd opinion at the time. I thought it was only because he likes to deal with things kind of "head in the sand". He only told me this about not wanting to hear the words over and over again just this past weekend. And we are 1 month beyond surgery.
Perhaps your mom also just wants a plan of action, but hopes to "hide" the rest of the time. That's okay. Like me, you too will learn to bite your lip and provide only the info that she's capable of absorbing at the time. And then go home and beat up on your pillow.... That's all good too.
We're here for you, Ginny! Praying for good results for your mom.
Terry0
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