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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You can do this
I too went 20 months after initial treatment and then the beast hit me again, and have since been on chemo the rest of this time still living my life on my terms. One day at a time, and deal with it as your docs say.
i know it's a blow, but like others told me, "you did it once before, do it again."
Best
Mike
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Here we go...
Ok, first the good news, the nodules in my lungs have either dissipated or have not grown. So, the risk of this having spread to the lungs is greatly reduced.
Now, the bad news. My recurrence in my thyroid is HPV16. What that means boys and girls, is that I am one of only about 50 cases ever recorded worldwide. To say the doc's are scratching their heads, would be a gross understatement. But I'm lucky, I have a really, really great team. The top H&N Onc and H&N Surgeon in Dallas, maybe the top 10 in the country.
So, here's the treatment plan. Radical neck dissection in the next two weeks followed by 18 weeks of chemo (no cisplatin or 5Fu thank God). While radiation is indicated, listening to the possible downside to radiating the same area with no surrounding tissue, will probably make me make a "quality of life" decision not to move in that direction. The next big hurdle is now many nodes are effected. If it's just a few (one or two) I probably have quite a bit of time remaining.
More to come....
Joe
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Be Strongjcortney said:Here we go...
Ok, first the good news, the nodules in my lungs have either dissipated or have not grown. So, the risk of this having spread to the lungs is greatly reduced.
Now, the bad news. My recurrence in my thyroid is HPV16. What that means boys and girls, is that I am one of only about 50 cases ever recorded worldwide. To say the doc's are scratching their heads, would be a gross understatement. But I'm lucky, I have a really, really great team. The top H&N Onc and H&N Surgeon in Dallas, maybe the top 10 in the country.
So, here's the treatment plan. Radical neck dissection in the next two weeks followed by 18 weeks of chemo (no cisplatin or 5Fu thank God). While radiation is indicated, listening to the possible downside to radiating the same area with no surrounding tissue, will probably make me make a "quality of life" decision not to move in that direction. The next big hurdle is now many nodes are effected. If it's just a few (one or two) I probably have quite a bit of time remaining.
More to come....
Joe
Joe,
I say you have years remaining
Keep the faith,
Matt
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Here we gojcortney said:Here we go...
Ok, first the good news, the nodules in my lungs have either dissipated or have not grown. So, the risk of this having spread to the lungs is greatly reduced.
Now, the bad news. My recurrence in my thyroid is HPV16. What that means boys and girls, is that I am one of only about 50 cases ever recorded worldwide. To say the doc's are scratching their heads, would be a gross understatement. But I'm lucky, I have a really, really great team. The top H&N Onc and H&N Surgeon in Dallas, maybe the top 10 in the country.
So, here's the treatment plan. Radical neck dissection in the next two weeks followed by 18 weeks of chemo (no cisplatin or 5Fu thank God). While radiation is indicated, listening to the possible downside to radiating the same area with no surrounding tissue, will probably make me make a "quality of life" decision not to move in that direction. The next big hurdle is now many nodes are effected. If it's just a few (one or two) I probably have quite a bit of time remaining.
More to come....
Joe
Joe, as a fellow a Dallas Survivor, I'm pulling hard for you in the neighborhood. Where are you getting your treatment in Dallas? We are lucky to have such great care so close to home.
Wishing you all the best as you move forward and deal with this.
Keith
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Thanks KeithKB56 said:Here we go
Joe, as a fellow a Dallas Survivor, I'm pulling hard for you in the neighborhood. Where are you getting your treatment in Dallas? We are lucky to have such great care so close to home.
Wishing you all the best as you move forward and deal with this.
Keith
I'm at Baylor downtown. Simply amazing care and great staff in every department I've come in contact with.
J.
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The good news is GREAT news....jcortney said:Here we go...
Ok, first the good news, the nodules in my lungs have either dissipated or have not grown. So, the risk of this having spread to the lungs is greatly reduced.
Now, the bad news. My recurrence in my thyroid is HPV16. What that means boys and girls, is that I am one of only about 50 cases ever recorded worldwide. To say the doc's are scratching their heads, would be a gross understatement. But I'm lucky, I have a really, really great team. The top H&N Onc and H&N Surgeon in Dallas, maybe the top 10 in the country.
So, here's the treatment plan. Radical neck dissection in the next two weeks followed by 18 weeks of chemo (no cisplatin or 5Fu thank God). While radiation is indicated, listening to the possible downside to radiating the same area with no surrounding tissue, will probably make me make a "quality of life" decision not to move in that direction. The next big hurdle is now many nodes are effected. If it's just a few (one or two) I probably have quite a bit of time remaining.
More to come....
Joe
A neck dissection....well, you had one of those before, didn't you? And no Cisplatin or 5FU....gotta thank gawd for that. Before you dismiss rads again, Candi (hwt) had SBRT, for her second and third go around. Might want to check into that before you totally nix any further radiation....I think it was 5 days, very few side effects....and VERY pinpoint field of rads. If they've got one of those machines at Mayo in Rochester, I'd think there's one in Houston.
Keeping you tucked, Joe.....and sending positive thoughts, good mojo, and crossing all digits.
p
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Joe, i still believe you canjcortney said:Here we go...
Ok, first the good news, the nodules in my lungs have either dissipated or have not grown. So, the risk of this having spread to the lungs is greatly reduced.
Now, the bad news. My recurrence in my thyroid is HPV16. What that means boys and girls, is that I am one of only about 50 cases ever recorded worldwide. To say the doc's are scratching their heads, would be a gross understatement. But I'm lucky, I have a really, really great team. The top H&N Onc and H&N Surgeon in Dallas, maybe the top 10 in the country.
So, here's the treatment plan. Radical neck dissection in the next two weeks followed by 18 weeks of chemo (no cisplatin or 5Fu thank God). While radiation is indicated, listening to the possible downside to radiating the same area with no surrounding tissue, will probably make me make a "quality of life" decision not to move in that direction. The next big hurdle is now many nodes are effected. If it's just a few (one or two) I probably have quite a bit of time remaining.
More to come....
Joe
Joe, i still believe you can have a good outcome from all of this. P has a good point of the rad, please check into that to see if that's something you'd be interested in. Candi did very well with it. praying for a successful neck dissection and that chemo won't be too rough on you. also praying that very few nodes are involved. keeping you in my thoughts and prayers Joe, you can do this.
God bless you,
dj
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Much better prognosisjcortney said:Initial read was not SCC.
Initial read was not SCC. They tell me SCC of thyroid extremely rare with a poor prognosis while thyroid cells have the opposite prognosis.
Joe
I belive I read that the prognosis for thyroid is at 97.7% in your favor. Good thoughts and plenty of prayers as well.
Bill
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Nopephrannie51 said:The good news is GREAT news....
A neck dissection....well, you had one of those before, didn't you? And no Cisplatin or 5FU....gotta thank gawd for that. Before you dismiss rads again, Candi (hwt) had SBRT, for her second and third go around. Might want to check into that before you totally nix any further radiation....I think it was 5 days, very few side effects....and VERY pinpoint field of rads. If they've got one of those machines at Mayo in Rochester, I'd think there's one in Houston.
Keeping you tucked, Joe.....and sending positive thoughts, good mojo, and crossing all digits.
p
Phran,
No, I've never had any surgery on my neck (except for the thyroid surgery last week). The point they are making is that with the removal of all the surrounding tissue, their experience has shown them that there is often irreparable deterioration of the throat, saliva glands and perhaps maxillary bone. I'm honest enough with myself to know that I probably can't be cured without the rads but, both my wife and I agree, that there "life modifications" I'm willing to accept and some that I am not.
No decisions are set in stone yet, a lot will hinge on what the pathology shows after the surgery so, I guess we'll see what we see.
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Stay positive.....
Joe,
Sounds like you have gotten plenty of information to help you move forward. When is your surgery scheduled?
You've been through this before, you CAN do this!
Stay positive my friend...all will go well.
God Bless,
~C
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Joe
Been thinking about you since I was on last. Sounds like that Clint Eastwood movie- The Good The Bad and The Ugly. Take the good and dwell on it and stay positive. Certainly quality of life is something to consider but remember we are all different and because statistics change. Your dicisions and your fight are always backed by your friends on this great site. Kick some butt, I'll be watching in my little corner of the room.
Enjoy the day
Jeff
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Latest
Ok, met with the surgeon today. We are going to take the rest of the thyroid and all the lymph nodes on the right side. Depending on how many are infected will determine therapy. His take on it was he wouldn't suggest radiation if it's just one or two. Chemo IS indicated as there were cells present in the blood vessels.
That's all folks, I'll update you guys after the pathology report in 10 days or so.
As a side note, as I said to Don in an email, I'm surprisingly not too jazzed by all of this. Since it's totally outside my control, I'll let the "universe" worry over it and I'll just roll with the punches.
Thanks for all the kind wishes.
Joe
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IT'S ALWAYS SOMETH'IN, BUT SOMETIMES NOT
Hey Joe, I'm sorry to hear about the rollercoaster, that you are on. Hopefully, the scan will confirm that the doc got the beast re-invasion, and you will be able to continue your new normal evolution with no further problems. By the by, you say that you are getting a CT scan, has a PET/CT combo eyes to thighs scan ever been discussed, as I believe that the combo is the gold standard scan that catches everything. If not, it might be worth asking your docs about, I'm just say'in, as they say. I'm sending you my best wishes, hopes, and positive energy for a NEDS report from the scan.
PATRICK
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Thanks Patpatricke said:IT'S ALWAYS SOMETH'IN, BUT SOMETIMES NOT
Hey Joe, I'm sorry to hear about the rollercoaster, that you are on. Hopefully, the scan will confirm that the doc got the beast re-invasion, and you will be able to continue your new normal evolution with no further problems. By the by, you say that you are getting a CT scan, has a PET/CT combo eyes to thighs scan ever been discussed, as I believe that the combo is the gold standard scan that catches everything. If not, it might be worth asking your docs about, I'm just say'in, as they say. I'm sending you my best wishes, hopes, and positive energy for a NEDS report from the scan.
PATRICK
Yes, two months ago had the PET. Nothing but the nodules in my chest and the thiroid.
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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
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it is nice to have a planjcortney 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
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
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T&Plongtermsurvivor 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
Joe,
I wish for you the best results possible from your upcoming surgery and treatments.
Maybe we can have that hotdog after all this is finished.
Good luck,
Matt
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