It's not cancer till the doc's say it's cancer. Well, they said it's cancer+UPDATE of UPDATE
Comments
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Keeping you in my pocket, Joe....jcortney said:Here's the plan
On this Thursday (15th) I'll have the rest of the thyroid and lymph nodes on the right side removed. Probably a two night hospital stay. They tell me that they are pretty sure only one node is affected but we'll see for sure after the pathology.
After that will be chemo (Carbo/taxol/erbitux) for quite some time. My Onc yesterday, when I asked how long said "until I get bored"
After that he said "a minimum of 18 weeks and longer if you will let me".Seems that I am causing a bit of excitement, I'm the only one on the schedule for a tumor board tomorrow and they expect a full house. It's nice to be special <grin>.
Take care of each other,
Joe
18 weeks....wow.....had to use both hands to figure out how many months that is! That's a pretty good stretch, but I'm positive you can do this....
Sending you a ton of positive thoughts and prayers.....you've got all of us on your team.
p
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wish you the best..longtermsurvivor said:it is nice to have a plan
The key question to the board would be "exactly what is the survival advantage to being on long term combination chemotherapy under my circumstances." I'm not trying to stir things up, its just a question what has real importance to you, that needs to have an answer you are comfortable with.
best to you
pat
Hey Joe,
I was going in circles a bit then read Pat's response a few times and went in circles again. Do ask the hard questions, you want to know where you stand. Surgery and rads kill cancer. Does the surgeon expect to get clear margins to the primary and any other nodes? If so, then chemo is for mop up of any loose micro cells? If not, is the chemo to manage any further growth? Get your questions lined up and try to have someone along to attend tumor board. Good luck! Don
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Board Commentslongtermsurvivor said:it is nice to have a plan
The key question to the board would be "exactly what is the survival advantage to being on long term combination chemotherapy under my circumstances." I'm not trying to stir things up, its just a question what has real importance to you, that needs to have an answer you are comfortable with.
best to you
pat
Just got a call from my MedOnc with the conversation from the board. He said, half the participants suggested a fine needle biopsy of the lung prior to surgery. Their rational was "if there is positive lung cancer, then the surgery is unnecessary". They were all in complete agreement with surgery/chemo if the lung was negative. That being said, here was my reply to my Doc:
I know you are in clinic now so don’t worry about replying until you have time. Ok, here’s my read on all of this. Correct me if I’m wrong, but if this was 2 months ago the half the room that wanted the biopsy would have wanted to biopsy the large (1.4 cm) mass in the lower left lobe that has all but resolved itself and would have never even looked at the two very small undefined ones on the right, agreed? The reality seems to be that we would really need to biopsy every single one of these till we were sure they were all benign or found one that was positive. Ipso facto, just because we look at these two, and if they come up benign, doesn’t mean that there isn’t a positive one that we didn’t biopsy. Then there is the mental aspect. If I proceed with the position that the lung is what the lung is, and since we are going to treat it anyway, why put myself through the anguish of knowing I have stage IV lung disease. If it’s there, it will pop it’s ugly head up somewhere down the road and we’ll deal with it then. If it’s not, then we did what we needed to do anyway. So, unless I’m making wrong assumptions, let’s get this crap out.
He wrote back that he was in complete agreement.
I have had so many lung nodules, that have come and gone and have a history of aspirating, that having a biopsy of two spots (I probably have 10 in my lungs) that are millimeters (not cm's) in size seems not a reason to delay the surgery. As someone asked, the CT findings lead the surgeon to believe that there is a very finite invasion of the lymph nodes so we'll see.
Anyway, my wife and I are in complete agreement. The glass is half full, not half empty.
J.
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Joe, I'm praying for you andjcortney said:Board Comments
Just got a call from my MedOnc with the conversation from the board. He said, half the participants suggested a fine needle biopsy of the lung prior to surgery. Their rational was "if there is positive lung cancer, then the surgery is unnecessary". They were all in complete agreement with surgery/chemo if the lung was negative. That being said, here was my reply to my Doc:
I know you are in clinic now so don’t worry about replying until you have time. Ok, here’s my read on all of this. Correct me if I’m wrong, but if this was 2 months ago the half the room that wanted the biopsy would have wanted to biopsy the large (1.4 cm) mass in the lower left lobe that has all but resolved itself and would have never even looked at the two very small undefined ones on the right, agreed? The reality seems to be that we would really need to biopsy every single one of these till we were sure they were all benign or found one that was positive. Ipso facto, just because we look at these two, and if they come up benign, doesn’t mean that there isn’t a positive one that we didn’t biopsy. Then there is the mental aspect. If I proceed with the position that the lung is what the lung is, and since we are going to treat it anyway, why put myself through the anguish of knowing I have stage IV lung disease. If it’s there, it will pop it’s ugly head up somewhere down the road and we’ll deal with it then. If it’s not, then we did what we needed to do anyway. So, unless I’m making wrong assumptions, let’s get this crap out.
He wrote back that he was in complete agreement.
I have had so many lung nodules, that have come and gone and have a history of aspirating, that having a biopsy of two spots (I probably have 10 in my lungs) that are millimeters (not cm's) in size seems not a reason to delay the surgery. As someone asked, the CT findings lead the surgeon to believe that there is a very finite invasion of the lymph nodes so we'll see.
Anyway, my wife and I are in complete agreement. The glass is half full, not half empty.
J.
Joe, I'm praying for you and your wife. you can do this.
God bless you,
dj
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Very good points.....
J,
I think you've made some very good points here. I hope your doctor follows through with you thoughts here. I don't mean to put a twist into this because I know this is all overwhelming to sort out, but did you think of getting a second opinion again like you did in the beginning (MD Anderson)?
Just a thought if things get too complicated with the ideas ....sometimes we have to be our own advocate ( and you are doing a wonderful job).
P.S. ( Didn't Michael Douglas have thyroid cancer that was caused from HPV?....thought I read that somewhere...)
~C
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Board commentsjcortney said:Board Comments
Just got a call from my MedOnc with the conversation from the board. He said, half the participants suggested a fine needle biopsy of the lung prior to surgery. Their rational was "if there is positive lung cancer, then the surgery is unnecessary". They were all in complete agreement with surgery/chemo if the lung was negative. That being said, here was my reply to my Doc:
I know you are in clinic now so don’t worry about replying until you have time. Ok, here’s my read on all of this. Correct me if I’m wrong, but if this was 2 months ago the half the room that wanted the biopsy would have wanted to biopsy the large (1.4 cm) mass in the lower left lobe that has all but resolved itself and would have never even looked at the two very small undefined ones on the right, agreed? The reality seems to be that we would really need to biopsy every single one of these till we were sure they were all benign or found one that was positive. Ipso facto, just because we look at these two, and if they come up benign, doesn’t mean that there isn’t a positive one that we didn’t biopsy. Then there is the mental aspect. If I proceed with the position that the lung is what the lung is, and since we are going to treat it anyway, why put myself through the anguish of knowing I have stage IV lung disease. If it’s there, it will pop it’s ugly head up somewhere down the road and we’ll deal with it then. If it’s not, then we did what we needed to do anyway. So, unless I’m making wrong assumptions, let’s get this crap out.
He wrote back that he was in complete agreement.
I have had so many lung nodules, that have come and gone and have a history of aspirating, that having a biopsy of two spots (I probably have 10 in my lungs) that are millimeters (not cm's) in size seems not a reason to delay the surgery. As someone asked, the CT findings lead the surgeon to believe that there is a very finite invasion of the lymph nodes so we'll see.
Anyway, my wife and I are in complete agreement. The glass is half full, not half empty.
J.
Joe, your approach seems totally logical and the right course of action. We're a group of glass half full people and that's the way I see the world as well. I live in McKinney if there is anyhting I can ever do for you. Keeping you and your wife in mt thoughts and prayers.
Keith
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I'll be thinking of you Thursdayjcortney said:Board Comments
Just got a call from my MedOnc with the conversation from the board. He said, half the participants suggested a fine needle biopsy of the lung prior to surgery. Their rational was "if there is positive lung cancer, then the surgery is unnecessary". They were all in complete agreement with surgery/chemo if the lung was negative. That being said, here was my reply to my Doc:
I know you are in clinic now so don’t worry about replying until you have time. Ok, here’s my read on all of this. Correct me if I’m wrong, but if this was 2 months ago the half the room that wanted the biopsy would have wanted to biopsy the large (1.4 cm) mass in the lower left lobe that has all but resolved itself and would have never even looked at the two very small undefined ones on the right, agreed? The reality seems to be that we would really need to biopsy every single one of these till we were sure they were all benign or found one that was positive. Ipso facto, just because we look at these two, and if they come up benign, doesn’t mean that there isn’t a positive one that we didn’t biopsy. Then there is the mental aspect. If I proceed with the position that the lung is what the lung is, and since we are going to treat it anyway, why put myself through the anguish of knowing I have stage IV lung disease. If it’s there, it will pop it’s ugly head up somewhere down the road and we’ll deal with it then. If it’s not, then we did what we needed to do anyway. So, unless I’m making wrong assumptions, let’s get this crap out.
He wrote back that he was in complete agreement.
I have had so many lung nodules, that have come and gone and have a history of aspirating, that having a biopsy of two spots (I probably have 10 in my lungs) that are millimeters (not cm's) in size seems not a reason to delay the surgery. As someone asked, the CT findings lead the surgeon to believe that there is a very finite invasion of the lymph nodes so we'll see.
Anyway, my wife and I are in complete agreement. The glass is half full, not half empty.
J.
Good luck and fast healing!!!
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Good luck joejcortney said:Board Comments
Just got a call from my MedOnc with the conversation from the board. He said, half the participants suggested a fine needle biopsy of the lung prior to surgery. Their rational was "if there is positive lung cancer, then the surgery is unnecessary". They were all in complete agreement with surgery/chemo if the lung was negative. That being said, here was my reply to my Doc:
I know you are in clinic now so don’t worry about replying until you have time. Ok, here’s my read on all of this. Correct me if I’m wrong, but if this was 2 months ago the half the room that wanted the biopsy would have wanted to biopsy the large (1.4 cm) mass in the lower left lobe that has all but resolved itself and would have never even looked at the two very small undefined ones on the right, agreed? The reality seems to be that we would really need to biopsy every single one of these till we were sure they were all benign or found one that was positive. Ipso facto, just because we look at these two, and if they come up benign, doesn’t mean that there isn’t a positive one that we didn’t biopsy. Then there is the mental aspect. If I proceed with the position that the lung is what the lung is, and since we are going to treat it anyway, why put myself through the anguish of knowing I have stage IV lung disease. If it’s there, it will pop it’s ugly head up somewhere down the road and we’ll deal with it then. If it’s not, then we did what we needed to do anyway. So, unless I’m making wrong assumptions, let’s get this crap out.
He wrote back that he was in complete agreement.
I have had so many lung nodules, that have come and gone and have a history of aspirating, that having a biopsy of two spots (I probably have 10 in my lungs) that are millimeters (not cm's) in size seems not a reason to delay the surgery. As someone asked, the CT findings lead the surgeon to believe that there is a very finite invasion of the lymph nodes so we'll see.
Anyway, my wife and I are in complete agreement. The glass is half full, not half empty.
J.
Good luck joe
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not to worrydonfoo said:wish you the best..
Hey Joe,
I was going in circles a bit then read Pat's response a few times and went in circles again. Do ask the hard questions, you want to know where you stand. Surgery and rads kill cancer. Does the surgeon expect to get clear margins to the primary and any other nodes? If so, then chemo is for mop up of any loose micro cells? If not, is the chemo to manage any further growth? Get your questions lined up and try to have someone along to attend tumor board. Good luck! Don
as my head is still spinning as well. The thyroid does contain lymphoid tissue, and although it has not been said, it is a good bet that this is where the met came from, rather than arising de novo within the thyroid itself. The thyroid is also spared during radiation, so it didn't get aywhere near the full 70 Gy to begin with. Assuming this, and I admit it is an assumption, then a straightforward lymph node dissection should be a highly effective treatment. The thing that concerns me is mostly this open ended plan for chemo. These agents are, as we all know, with a certain risk, and plans should include an endpoint. Unless treatment is determined to be palliative, which this is not. I'm just a guy that likes definition in things whenever possible. I think this is likely a good plan for Joe, but the looseness of it bugs me a bit, maybe that's just me.
Pat
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Joe, praying for you and thecureitall66 said:Very good points.....
J,
I think you've made some very good points here. I hope your doctor follows through with you thoughts here. I don't mean to put a twist into this because I know this is all overwhelming to sort out, but did you think of getting a second opinion again like you did in the beginning (MD Anderson)?
Just a thought if things get too complicated with the ideas ....sometimes we have to be our own advocate ( and you are doing a wonderful job).
P.S. ( Didn't Michael Douglas have thyroid cancer that was caused from HPV?....thought I read that somewhere...)
~C
Joe, praying for you and the surgeon as well.
C, I believe Michael Douglas had Base of tongue cancer.
Debbie
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Sorry, probably wasn't really clearlongtermsurvivor said:not to worry
as my head is still spinning as well. The thyroid does contain lymphoid tissue, and although it has not been said, it is a good bet that this is where the met came from, rather than arising de novo within the thyroid itself. The thyroid is also spared during radiation, so it didn't get aywhere near the full 70 Gy to begin with. Assuming this, and I admit it is an assumption, then a straightforward lymph node dissection should be a highly effective treatment. The thing that concerns me is mostly this open ended plan for chemo. These agents are, as we all know, with a certain risk, and plans should include an endpoint. Unless treatment is determined to be palliative, which this is not. I'm just a guy that likes definition in things whenever possible. I think this is likely a good plan for Joe, but the looseness of it bugs me a bit, maybe that's just me.
Pat
The Chemo plan is 10 weekly applications of Carbo/Tx and eight weeks of eributx. I think it was a bit of a joke that he said he'd keep giving me chemo till he got bored.
J.
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All done
3 1/2 hour surgery, no complications. I'm sitting in my room watching The Matrix Of all things
very minor pain bleeding through the light dose of morphine. Went from liquid diet to soft immediately and, truth is I could easily eat eggs.
Anyway, thanks for the good wishes and prayers, next hurdle the biopsy results next week.
Joe
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joe, praying for great biopsyjcortney said:All done
3 1/2 hour surgery, no complications. I'm sitting in my room watching The Matrix Of all things
very minor pain bleeding through the light dose of morphine. Went from liquid diet to soft immediately and, truth is I could easily eat eggs.
Anyway, thanks for the good wishes and prayers, next hurdle the biopsy results next week.
Joe
joe, praying for great biopsy results. positive thots and good mojo com'n atcha!
dj
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Eggs are good :) I’m so gladjcortney said:All done
3 1/2 hour surgery, no complications. I'm sitting in my room watching The Matrix Of all things
very minor pain bleeding through the light dose of morphine. Went from liquid diet to soft immediately and, truth is I could easily eat eggs.
Anyway, thanks for the good wishes and prayers, next hurdle the biopsy results next week.
Joe
Eggs are good
I’m so glad that you are able to eat soft foods and that your pain is minor. Fingered crossed for the biopsy results... My prayers with you.
Oh, by the way i can prepare you a list of nice movies to watch, just tell me what genre you like
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Third day, they say this is as bad as it gets
Hope they are correct. Swelling came on like a thief in the night. Swallowing is a trial, almost as bad as when I had rads, minus the mucous, even tough to get an Advil down. But, kind of like a hemorrhoid, this too shall pass
.Hope everyone is having a great weekend.
Joe
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surprisedjcortney said:Third day, they say this is as bad as it gets
Hope they are correct. Swelling came on like a thief in the night. Swallowing is a trial, almost as bad as when I had rads, minus the mucous, even tough to get an Advil down. But, kind of like a hemorrhoid, this too shall pass
.Hope everyone is having a great weekend.
Joe
Hey Joe,
I was surprised to hear about such swelling occuring from a procedure to remove the material. I'm assuming it is fluid and not infection. Hope it passes soon. Keep the meds coming, no need to suffer. Don
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Expecteddonfoo said:surprised
Hey Joe,
I was surprised to hear about such swelling occuring from a procedure to remove the material. I'm assuming it is fluid and not infection. Hope it passes soon. Keep the meds coming, no need to suffer. Don
Doc warned me that it was going to happen, so not a shock but still a bummer.
J.
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Joejcortney said:Expected
Doc warned me that it was going to happen, so not a shock but still a bummer.
J.
Good to have the surgery behind you. My recent taxol/erbitux tx was so much easier than 2012 when I did rads and Cisplatin. I certainly hope the same for you. You might want to think about putting Auquaphor on your hands and feet one or two nights a week and putting cotton socks and cotton gloves on to sleep (you can get cotten gardening gloves) . I did that with my hands and they never cracked. I didn't do it on my feet and had a couple of cracks late in the game. May also want to try a shampoo by Aveda called invati. It is good for thinning hair. A male friend used it after his chemo and his hair came back in rather quickly. I just bought some today. Only found on-line or at Nordstrom. I know that's just cosmetic but the closer we can be to feeling normal the better. If rads end up on the agenda, I hope you will read up on SBRT. It's not an option for every situation but Phrannie was right, it did only take 5 days. Also, article on STL news this week about Mayo's new clinical trials using huge doses of measles vaccine. H&N cancers included. http://www.ksdk.com/story/news/health/2014/05/15/measles-vaccine-cancer-cure/9140855/
Sorry your fight has to continue. You can do this and you are at one of the world's best facilities. I do understand the quality of life thoughts and offer my support and prayers for all of your decisions.
God Bless,
Candi
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Lifting you up in prayerjcortney said:Third day, they say this is as bad as it gets
Hope they are correct. Swelling came on like a thief in the night. Swallowing is a trial, almost as bad as when I had rads, minus the mucous, even tough to get an Advil down. But, kind of like a hemorrhoid, this too shall pass
.Hope everyone is having a great weekend.
Joe
Sorry to hear about your recent diagnosis but it sounds like you've got a great team and solid personal outlook on treatment.
Can't recall if you had the bilateral neck dissection today but if so, that's where your swelling came from, for sure. They tell me it will take time for lymph to find new drainage paths so if that's what your swelling is like, I can relate.
I'm lifting you and your wife up in prayer. Praying for comfort and supernatural healing. Protection from this horrible disease. My prayers.
kelly
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