How do I get muliple docs to get stories straight??

nancyann3

I think all survivors and caregivers should get together and write a book on how frustrating it is to deal with muliple doctors. Geeeez

It amazes me how one man and one PET scan can have so many results!!...Everytime I hear results from the scan, I learn new things. Everywhere from, not a surgical candidate and never will be, to main tumor is gone and just dealing with nodes and now we may add radiation to help with the nodes. AND then there is the doc that sees no need for us to come and talk to him right now because he cant do anything for him and wants to scan him AFTER he has ALL his chemo AND radiation to see if there is anything he can do then. Hes the one who said he will never be a surgical candidate!!! because they cant take the nodes out too.

Sorry guys just had to vent.

Thanks for listening.
Nancy

Unknown

This comment has been removed by the Moderator

Donna70

unknown said:

This comment has been removed by the Moderator

confusing for sure
Don't know if this is any help I get all my scan results myself besides the drs. My radiology office just mails them out to me. I have a medical background so I read them myself. Most of the time the drs were straight with me. When I did get the lung involvement not so much. I had to ask to see a specialist when I realized it was not just something that was going away. I hope you get better answers from the drs, this does not sound right at all. You need at least one dr you can trust absolutely, for me it is my oncologist. I don't blame you for being confused, you are getting too many different messages. I hope and pray that you can get some solid answers. Is there some kind of liason at your hubby's treatment facility who can help you get the correct answers. take care, prayers always,
Donna70

nancyann3

unknown said:

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No organ metastasis as far as we are told.
We see onc and a resident most time we have an appt. I also talk to nurses in between on phone when I am dealing with appt. and such. I have started pouring on the questions again lately because he is nearing the end of his chemo and just had another PET. Each time I talk to a differnt doc or nurse I get another piece of info. I never understand why the main onc doesn't tell all. I started question the onc and resident about surgery again, because I was told by the surgeon that he could become a surgical candidate again if the chemo controlled and reduced the node involvement around the esophagus. The next thing I know is a nurse is calling me telling me they had a meeting about steve (onc, surgeon) and surgery not a option and NEVER will be, because of the metastatic disease around the esophagus. I asked her to explain exactly where this metastasis is. She said lymph node only and nothing distant. No other organ. I said, cant u take the nodes out to? She said no. I told her that no one knows for sure that these nodes are cancer. I also told her that the onc even said that they could be just reacting to the cancer, infection, stent....etc. I also metioned that I have read about Pet's showing false positives and disqualifing people from surgery that could have. I told her I felt Steve is so close to being a candidate and it seems it all rides on these nodes in question (that no one can tell me for sure are cancer) I also learned from her that it seems the main tumor in the esophagus is gone. Report says there is some thickning,but they don't know if it is still cancer or just irritation from stent..........lol.....this is new news to us!!!!

She made us an appt. to see this surgeon so I could make him explain to me what it is that makes steve no able to have surgery. I wanted to see pics and scans. I got a call today from another nurse saying this surgeon said there was no need to see us now, because he couldn't do anything for him and he wanted to see him two weeks after he had radiation treatments and finished chemo. He would then rescan him and see if there was anything he could do then. (remember this is the surgeon that said he would never be a surgical candidate)

We see a radiation doc on the 11th. this is new. No talk about radiation since the beginning and it was that surgeon that stopped it then and said just chemo may be enough and then surgery. The rad doc was at meeting too and said he thought he could help with node involvement. My question to him will be, what if the nodes arent cancer and u radiate them???......I don't want steve to have to go through something when it could be unnessisary.

It was the June scan that disqualified him from surgery, saying more metastatic disease in chest, but even then no other organs involved. That was the same time that the first stent was causing problems and moving. So I have always questioned that what the pet was seeing was irritation rather then cancer growth. The funniest part is the aug. scan showed no change and that was before outpatient chemo was even started. Sooo, if I only go by what we were told about scans, it sounds like cancer grew fast at june scan and then stopped all by itself without treatment, and stays the same.....so weird. Its from nurses and bits and pieces hear and there I get info about tumor shrink and such.

In the mean time I am watching a man that seems to be slowly improving everyday. Eats what he wants, has started going out to resturants again. Walks faster, visits more. I know that things can change fast and cancer is unpredictable. I also know about false negitives as well and try to stay realitic about everything. I try to keep myself in the real possibilities here and still try to enjoy the good times.

Thanks everyone

sal314

nancyann3 said:

No organ metastasis as far as we are told.
We see onc and a resident most time we have an appt. I also talk to nurses in between on phone when I am dealing with appt. and such. I have started pouring on the questions again lately because he is nearing the end of his chemo and just had another PET. Each time I talk to a differnt doc or nurse I get another piece of info. I never understand why the main onc doesn't tell all. I started question the onc and resident about surgery again, because I was told by the surgeon that he could become a surgical candidate again if the chemo controlled and reduced the node involvement around the esophagus. The next thing I know is a nurse is calling me telling me they had a meeting about steve (onc, surgeon) and surgery not a option and NEVER will be, because of the metastatic disease around the esophagus. I asked her to explain exactly where this metastasis is. She said lymph node only and nothing distant. No other organ. I said, cant u take the nodes out to? She said no. I told her that no one knows for sure that these nodes are cancer. I also told her that the onc even said that they could be just reacting to the cancer, infection, stent....etc. I also metioned that I have read about Pet's showing false positives and disqualifing people from surgery that could have. I told her I felt Steve is so close to being a candidate and it seems it all rides on these nodes in question (that no one can tell me for sure are cancer) I also learned from her that it seems the main tumor in the esophagus is gone. Report says there is some thickning,but they don't know if it is still cancer or just irritation from stent..........lol.....this is new news to us!!!!

She made us an appt. to see this surgeon so I could make him explain to me what it is that makes steve no able to have surgery. I wanted to see pics and scans. I got a call today from another nurse saying this surgeon said there was no need to see us now, because he couldn't do anything for him and he wanted to see him two weeks after he had radiation treatments and finished chemo. He would then rescan him and see if there was anything he could do then. (remember this is the surgeon that said he would never be a surgical candidate)

We see a radiation doc on the 11th. this is new. No talk about radiation since the beginning and it was that surgeon that stopped it then and said just chemo may be enough and then surgery. The rad doc was at meeting too and said he thought he could help with node involvement. My question to him will be, what if the nodes arent cancer and u radiate them???......I don't want steve to have to go through something when it could be unnessisary.

It was the June scan that disqualified him from surgery, saying more metastatic disease in chest, but even then no other organs involved. That was the same time that the first stent was causing problems and moving. So I have always questioned that what the pet was seeing was irritation rather then cancer growth. The funniest part is the aug. scan showed no change and that was before outpatient chemo was even started. Sooo, if I only go by what we were told about scans, it sounds like cancer grew fast at june scan and then stopped all by itself without treatment, and stays the same.....so weird. Its from nurses and bits and pieces hear and there I get info about tumor shrink and such.

In the mean time I am watching a man that seems to be slowly improving everyday. Eats what he wants, has started going out to resturants again. Walks faster, visits more. I know that things can change fast and cancer is unpredictable. I also know about false negitives as well and try to stay realitic about everything. I try to keep myself in the real possibilities here and still try to enjoy the good times.

Thanks everyone

Wow....My Head is Spinning
Just reading your posts is enough to make you crazy. I really feel for you guys!

Have you thought of getting a second opinion? I think I would definately do that at one of the major cancer centers if you're able!

I'll be praying for you to get the "right" answers and get moving on treatment! Time is truly of the essence. Especially since the cancer hasn't spread to any other organs!

Blessings,
Sally

unclaw2002

nancyann3 said:

No organ metastasis as far as we are told.
We see onc and a resident most time we have an appt. I also talk to nurses in between on phone when I am dealing with appt. and such. I have started pouring on the questions again lately because he is nearing the end of his chemo and just had another PET. Each time I talk to a differnt doc or nurse I get another piece of info. I never understand why the main onc doesn't tell all. I started question the onc and resident about surgery again, because I was told by the surgeon that he could become a surgical candidate again if the chemo controlled and reduced the node involvement around the esophagus. The next thing I know is a nurse is calling me telling me they had a meeting about steve (onc, surgeon) and surgery not a option and NEVER will be, because of the metastatic disease around the esophagus. I asked her to explain exactly where this metastasis is. She said lymph node only and nothing distant. No other organ. I said, cant u take the nodes out to? She said no. I told her that no one knows for sure that these nodes are cancer. I also told her that the onc even said that they could be just reacting to the cancer, infection, stent....etc. I also metioned that I have read about Pet's showing false positives and disqualifing people from surgery that could have. I told her I felt Steve is so close to being a candidate and it seems it all rides on these nodes in question (that no one can tell me for sure are cancer) I also learned from her that it seems the main tumor in the esophagus is gone. Report says there is some thickning,but they don't know if it is still cancer or just irritation from stent..........lol.....this is new news to us!!!!

She made us an appt. to see this surgeon so I could make him explain to me what it is that makes steve no able to have surgery. I wanted to see pics and scans. I got a call today from another nurse saying this surgeon said there was no need to see us now, because he couldn't do anything for him and he wanted to see him two weeks after he had radiation treatments and finished chemo. He would then rescan him and see if there was anything he could do then. (remember this is the surgeon that said he would never be a surgical candidate)

We see a radiation doc on the 11th. this is new. No talk about radiation since the beginning and it was that surgeon that stopped it then and said just chemo may be enough and then surgery. The rad doc was at meeting too and said he thought he could help with node involvement. My question to him will be, what if the nodes arent cancer and u radiate them???......I don't want steve to have to go through something when it could be unnessisary.

It was the June scan that disqualified him from surgery, saying more metastatic disease in chest, but even then no other organs involved. That was the same time that the first stent was causing problems and moving. So I have always questioned that what the pet was seeing was irritation rather then cancer growth. The funniest part is the aug. scan showed no change and that was before outpatient chemo was even started. Sooo, if I only go by what we were told about scans, it sounds like cancer grew fast at june scan and then stopped all by itself without treatment, and stays the same.....so weird. Its from nurses and bits and pieces hear and there I get info about tumor shrink and such.

In the mean time I am watching a man that seems to be slowly improving everyday. Eats what he wants, has started going out to resturants again. Walks faster, visits more. I know that things can change fast and cancer is unpredictable. I also know about false negitives as well and try to stay realitic about everything. I try to keep myself in the real possibilities here and still try to enjoy the good times.

Thanks everyone

Go as fast as you can and
Go as fast as you can and get a second opinion. There really is no time to waste with the folks you have been dealing with. Ask for copies of his entire medical file and ask for copies of the written analysis on the scans --- anything you don't understand ask. It is his life and unless you speak up it sounds like the professionals you are working with are treating you as grade school children who can't possibly understand.

This is a matter of life and death --- don't be satisfied with Mediocrity --- take charge and find someone who can speak the truth to you. You may not like what they say, it may not be the news you hope for, but at least you will get a straight answer and have the opportunity to make an informed decision.

Good luck,

Best,
Cindy

Unknown

nancyann3 said:

No organ metastasis as far as we are told.
We see onc and a resident most time we have an appt. I also talk to nurses in between on phone when I am dealing with appt. and such. I have started pouring on the questions again lately because he is nearing the end of his chemo and just had another PET. Each time I talk to a differnt doc or nurse I get another piece of info. I never understand why the main onc doesn't tell all. I started question the onc and resident about surgery again, because I was told by the surgeon that he could become a surgical candidate again if the chemo controlled and reduced the node involvement around the esophagus. The next thing I know is a nurse is calling me telling me they had a meeting about steve (onc, surgeon) and surgery not a option and NEVER will be, because of the metastatic disease around the esophagus. I asked her to explain exactly where this metastasis is. She said lymph node only and nothing distant. No other organ. I said, cant u take the nodes out to? She said no. I told her that no one knows for sure that these nodes are cancer. I also told her that the onc even said that they could be just reacting to the cancer, infection, stent....etc. I also metioned that I have read about Pet's showing false positives and disqualifing people from surgery that could have. I told her I felt Steve is so close to being a candidate and it seems it all rides on these nodes in question (that no one can tell me for sure are cancer) I also learned from her that it seems the main tumor in the esophagus is gone. Report says there is some thickning,but they don't know if it is still cancer or just irritation from stent..........lol.....this is new news to us!!!!

She made us an appt. to see this surgeon so I could make him explain to me what it is that makes steve no able to have surgery. I wanted to see pics and scans. I got a call today from another nurse saying this surgeon said there was no need to see us now, because he couldn't do anything for him and he wanted to see him two weeks after he had radiation treatments and finished chemo. He would then rescan him and see if there was anything he could do then. (remember this is the surgeon that said he would never be a surgical candidate)

We see a radiation doc on the 11th. this is new. No talk about radiation since the beginning and it was that surgeon that stopped it then and said just chemo may be enough and then surgery. The rad doc was at meeting too and said he thought he could help with node involvement. My question to him will be, what if the nodes arent cancer and u radiate them???......I don't want steve to have to go through something when it could be unnessisary.

It was the June scan that disqualified him from surgery, saying more metastatic disease in chest, but even then no other organs involved. That was the same time that the first stent was causing problems and moving. So I have always questioned that what the pet was seeing was irritation rather then cancer growth. The funniest part is the aug. scan showed no change and that was before outpatient chemo was even started. Sooo, if I only go by what we were told about scans, it sounds like cancer grew fast at june scan and then stopped all by itself without treatment, and stays the same.....so weird. Its from nurses and bits and pieces hear and there I get info about tumor shrink and such.

In the mean time I am watching a man that seems to be slowly improving everyday. Eats what he wants, has started going out to resturants again. Walks faster, visits more. I know that things can change fast and cancer is unpredictable. I also know about false negitives as well and try to stay realitic about everything. I try to keep myself in the real possibilities here and still try to enjoy the good times.

Thanks everyone

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Unknown

This comment has been removed by the Moderator

Bobs1wife

Get another opinion
Nancy, It is so frustrating when you don't get information and don't know exactly what is happening. In my opinion if you can't get straight up answers from who you are with, it is time for a change. We met a man in the chemo lab just this week who was told to just "go home". He did, but got different doctors, got treatment for mets to his liver, had the surgery after that, and stood before us NED 4 years after surgery! What a "gift" from God that he "just happened" to be the only other person waiting for his flu shot and port flush along with my husband. He just happened to say to my husband "What did you have?" Thanks be to God, he lifts us up in times when we are down. It was a true JOY to see this man and for the Lord to put us in the same place at the same time. Some call it happen stance, we call it a GIFT FROM GOD.

You deserve good communication and information. We have changed doctors and gotten second opinions. We are happy we did. Linda

nancyann3

unknown said:

This comment has been removed by the Moderator

Thanks for the response all..
Nothing any of you said in all your posts isn't what I have been thinking of for the last 9 months. I've been around and around with this hospital and cancer center more then I want to count.

I am from the medical field and understand alot of what I hear from the docs and combine that with what I have learned from you. I definatly can irritate them all at the center.
I have nightmares about how they are playing games with a life here. Believe me it weighs very heavy on me. The facts are insurance will not allow many options for us. To get better options for us would mean to move out of state. To move out of state would mean I would not have a job, we would lose a house, our children would lose a home. Have I thought this may be our only option. YES! Is Steve's life more important then anything?? YES! So, this just isn't a matter of finding a second opinion for us. In order for us to get a BETTER option for Steve's care, financially would be devistating for us.

We're not dealing with a small hospital here. He is at a university teaching hospital, so I'm very dissapointed with the communication and crap that goes on. Just know that I see and understand what you all are saying. I agree with you 110%. Just having the means to do it, is the hard part.

We also have never refused treatment that my help him get better. He has a stent and j-tube. Sitting on my coccix is the last thing I have been doing the last year. I am at every doc appt, every chemo infusion. I talk to every doctor, nurse etc......I ask, ask, ask and question question question. I also work full time and take care of two kids and school issues. I am also a caregiver at my work. I'm sorry is you feel your advice is being ignored. That is far from the case. I have learned a tremendous amount from all of you, and believe me I use it! I'm not looking for pity, just for info and to vent, like most all of us on here.


Thanks for hearing me vent again.

Unknown

nancyann3 said:

Thanks for the response all..
Nothing any of you said in all your posts isn't what I have been thinking of for the last 9 months. I've been around and around with this hospital and cancer center more then I want to count.

I am from the medical field and understand alot of what I hear from the docs and combine that with what I have learned from you. I definatly can irritate them all at the center.
I have nightmares about how they are playing games with a life here. Believe me it weighs very heavy on me. The facts are insurance will not allow many options for us. To get better options for us would mean to move out of state. To move out of state would mean I would not have a job, we would lose a house, our children would lose a home. Have I thought this may be our only option. YES! Is Steve's life more important then anything?? YES! So, this just isn't a matter of finding a second opinion for us. In order for us to get a BETTER option for Steve's care, financially would be devistating for us.

We're not dealing with a small hospital here. He is at a university teaching hospital, so I'm very dissapointed with the communication and crap that goes on. Just know that I see and understand what you all are saying. I agree with you 110%. Just having the means to do it, is the hard part.

We also have never refused treatment that my help him get better. He has a stent and j-tube. Sitting on my coccix is the last thing I have been doing the last year. I am at every doc appt, every chemo infusion. I talk to every doctor, nurse etc......I ask, ask, ask and question question question. I also work full time and take care of two kids and school issues. I am also a caregiver at my work. I'm sorry is you feel your advice is being ignored. That is far from the case. I have learned a tremendous amount from all of you, and believe me I use it! I'm not looking for pity, just for info and to vent, like most all of us on here.


Thanks for hearing me vent again.

This comment has been removed by the Moderator

nancyann3

unknown said:

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All is good William
Thanks for your websites. Very interesting. We are forging ahead with treatment. Seeing Radiologist this week. Hoping to get more specific info from him.

I have come to this site everyday since I joined and will continue. I lean on all your info and advice and caring. We live 600 miles away from family, so you all are my rock. I take info I learn from here to the docs and that gives me hope that it will keep them on their toes. I wont let Steve slip through the crack of the mindset of EC. I have known their mindset from the beginning. I can see it. But there is one huge road block in that mindset (ME).

Thanks again
Nancy