A newbie to your club *siiiiiigh*
Comments
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Is it true?
All communication with radiation oncologists I have had stated that the radiation can only be preformed "one" time. adjacent tissues down the road, possibly. No radiating a previously treated site. I am 48. I waited to have my left side lymph nodes checked thinking it would go away. Wrong. As in many cases by the time the areas are noticeable and scanned the CA is well advanced. My ENT preformed a Radical Neck Dissection after previous removal of 4 nodes in my neck along with the "protocol"tonsillectomy. I am thankful for this as bad as it has been.
You need to have a level of trust and confidence in your medical professionals. Treatment here is done according to American Cancer guidelines, with apparently some mild variations along the way. Find comfort in your doc and move forward. I saw 3 rad & medical oncologists prior to Tx. As stated by other the HPV+ in this case is a good thing. Mine is not.
I have found very good advise from folks that have been there. Right Here! Good luck and welcome.0 -
No SurgeryBigfuzzydoug said:No surgery
Are you concerned at all that if God-forbid, 10, 15, 20 years from now it should return - radiation may not be an option because you've already gone through it?
I'm all for aggressive means to beat this thing, but I question whether the "nuclear option" at age 41 is the wisest move? I'm new to this and still trying to figure it all out.
Who knows what the options will be in 10, 15, 20 years.0 -
TREATMENT DECISION MADE!
In my mind, I have chosen what my treatment will be.
I had an excellent visit with Dr. Chrisotpher Sullivan at Wake Forest University / Baptist Comprehensive Cancer Center on Wednesday. He's not recommending surgery or radiation yet... The risk factors for future cancer plays into it. If my risk factors were high such as smoking and not going to quit, surgery is the choice because it would come back a year after radiation. But I most likely have low risk factors... I SHOULDN'T HAVE CANCER AT ALL! So radiation now at 41 and getting rid of it once and for all is a very viable option. He wants to see a new pathology report. But he did spell out a course of action for some other things...
1. He's certain I have reflux and wants me to see his Gastrointerologist colleague for an EGD. He put me on Nexium.
2. He wants to test me for HPV. It doesn't change treatment, just gives an indicator on the liklihood of the cancer returning.
3. He's going to review path reports and talk to the other docs before recommending a course of action.
He did spell out my two options with the pros and cons:
Surgery - Pros: Won't have to go through the pain of radiation. Side-effects more clearly known (less question marks).
Cons: Less guarantee that 100% of malignant cells will be removed/killed. Almost certainty of being dysphonic (damaged voice). As he put it, there's no doing this as a gentle laryngoscopy and removing minimal tissue. This is cancer, it spreads and it can kill you. Surgery means the removal of one neck lymph node, all the lymphatic tissue on the left side and almost all of the left-side arytenoid all the way down to the vocal chord. Major surgery that would require several weeks to recover from. If it fails, then I will have done the surgery for nothing and still need radiation/chemo.
Radiation w/ low-dose Cisplatin - Pros: Save my voice, highest chance of killing all the cancer. Options in the future for pinpoint radiation, surgery and/or chemo. There are still some future options.
Cons: Temporary side-effects are worse and longer. More question marks as to what the permanent side-effects could be - but not as bad as being dysphonic. Mainly a once-in-a-lifetime deal. If it fails, but it most likely will not, still could consider surgery.
After thinking about it, I'm convinced radiation and low-dose chemo is the way to go. Unless the docs come back and convince me otherwise, I'm pretty much set on that being the wisest course of treatment. Kill it here and now and reduce/eliminate risk factors of a future return.0 -
RADIATION QUESTIONdavidgskinner said:Radiation twice...
I have asked radiation oncologists point blank if they can do radiation more than once on a person. They have all answered yes. So, there must be more to the story your docs (or whovever)are telling you about radiation being a once only option. They may prefer to be cautious and avoid "too much," but I don't believe that is a universally accepted idea.
Another thing to consider, the quicker you deal with the cancer cells, (ie: kill 'em by whatever method that works) the less likely they are to get into the lymph system and spread around.
I just ran this by my Doc yesterday because of this thread. He too too me he is not aware of a "once in a lifetime" dose of radiation.
Mike0 -
RADIATION QUESTIONdavidgskinner said:Radiation twice...
I have asked radiation oncologists point blank if they can do radiation more than once on a person. They have all answered yes. So, there must be more to the story your docs (or whovever)are telling you about radiation being a once only option. They may prefer to be cautious and avoid "too much," but I don't believe that is a universally accepted idea.
Another thing to consider, the quicker you deal with the cancer cells, (ie: kill 'em by whatever method that works) the less likely they are to get into the lymph system and spread around.
I just ran this by my Doc yesterday because of this thread. He too too me he is not aware of a "once in a lifetime" dose of radiation.
Mike0 -
GO WITH YOUR GUT FEELINGBigfuzzydoug said:TREATMENT DECISION MADE!
In my mind, I have chosen what my treatment will be.
I had an excellent visit with Dr. Chrisotpher Sullivan at Wake Forest University / Baptist Comprehensive Cancer Center on Wednesday. He's not recommending surgery or radiation yet... The risk factors for future cancer plays into it. If my risk factors were high such as smoking and not going to quit, surgery is the choice because it would come back a year after radiation. But I most likely have low risk factors... I SHOULDN'T HAVE CANCER AT ALL! So radiation now at 41 and getting rid of it once and for all is a very viable option. He wants to see a new pathology report. But he did spell out a course of action for some other things...
1. He's certain I have reflux and wants me to see his Gastrointerologist colleague for an EGD. He put me on Nexium.
2. He wants to test me for HPV. It doesn't change treatment, just gives an indicator on the liklihood of the cancer returning.
3. He's going to review path reports and talk to the other docs before recommending a course of action.
He did spell out my two options with the pros and cons:
Surgery - Pros: Won't have to go through the pain of radiation. Side-effects more clearly known (less question marks).
Cons: Less guarantee that 100% of malignant cells will be removed/killed. Almost certainty of being dysphonic (damaged voice). As he put it, there's no doing this as a gentle laryngoscopy and removing minimal tissue. This is cancer, it spreads and it can kill you. Surgery means the removal of one neck lymph node, all the lymphatic tissue on the left side and almost all of the left-side arytenoid all the way down to the vocal chord. Major surgery that would require several weeks to recover from. If it fails, then I will have done the surgery for nothing and still need radiation/chemo.
Radiation w/ low-dose Cisplatin - Pros: Save my voice, highest chance of killing all the cancer. Options in the future for pinpoint radiation, surgery and/or chemo. There are still some future options.
Cons: Temporary side-effects are worse and longer. More question marks as to what the permanent side-effects could be - but not as bad as being dysphonic. Mainly a once-in-a-lifetime deal. If it fails, but it most likely will not, still could consider surgery.
After thinking about it, I'm convinced radiation and low-dose chemo is the way to go. Unless the docs come back and convince me otherwise, I'm pretty much set on that being the wisest course of treatment. Kill it here and now and reduce/eliminate risk factors of a future return.
You most definitely have done your due dilligence. I am impressed by how much knowledge and research you have done in such a small amount of time. You are correct in saying you have to do what you think is right for you based on the level of trust / confidence you have in you advisors.
This just goes to show there is no such thing as a "one size fits all" approach to treatment.
Best of luck my friend.
Mike0 -
NOW I'M CONFUSEDBigfuzzydoug said:TREATMENT DECISION MADE!
In my mind, I have chosen what my treatment will be.
I had an excellent visit with Dr. Chrisotpher Sullivan at Wake Forest University / Baptist Comprehensive Cancer Center on Wednesday. He's not recommending surgery or radiation yet... The risk factors for future cancer plays into it. If my risk factors were high such as smoking and not going to quit, surgery is the choice because it would come back a year after radiation. But I most likely have low risk factors... I SHOULDN'T HAVE CANCER AT ALL! So radiation now at 41 and getting rid of it once and for all is a very viable option. He wants to see a new pathology report. But he did spell out a course of action for some other things...
1. He's certain I have reflux and wants me to see his Gastrointerologist colleague for an EGD. He put me on Nexium.
2. He wants to test me for HPV. It doesn't change treatment, just gives an indicator on the liklihood of the cancer returning.
3. He's going to review path reports and talk to the other docs before recommending a course of action.
He did spell out my two options with the pros and cons:
Surgery - Pros: Won't have to go through the pain of radiation. Side-effects more clearly known (less question marks).
Cons: Less guarantee that 100% of malignant cells will be removed/killed. Almost certainty of being dysphonic (damaged voice). As he put it, there's no doing this as a gentle laryngoscopy and removing minimal tissue. This is cancer, it spreads and it can kill you. Surgery means the removal of one neck lymph node, all the lymphatic tissue on the left side and almost all of the left-side arytenoid all the way down to the vocal chord. Major surgery that would require several weeks to recover from. If it fails, then I will have done the surgery for nothing and still need radiation/chemo.
Radiation w/ low-dose Cisplatin - Pros: Save my voice, highest chance of killing all the cancer. Options in the future for pinpoint radiation, surgery and/or chemo. There are still some future options.
Cons: Temporary side-effects are worse and longer. More question marks as to what the permanent side-effects could be - but not as bad as being dysphonic. Mainly a once-in-a-lifetime deal. If it fails, but it most likely will not, still could consider surgery.
After thinking about it, I'm convinced radiation and low-dose chemo is the way to go. Unless the docs come back and convince me otherwise, I'm pretty much set on that being the wisest course of treatment. Kill it here and now and reduce/eliminate risk factors of a future return.
First of all let me say how bad I feel that you have to go through this anxiety filled rollercoaster. From reading your posts and the amount of research you have done already I am sure you will make the right decision.Reading your post and some of the others raised a couple of questions in my mind.Last year I had SCC on both vocal cords.I had laser surgery and 29 radiation treatments.Wednesday was my one year anniversary.From the begining my ENT told me that he could not get all the cancer with the laser.He would have liked to remove more tissue but did not want to risk permanent damage to my voice.Both my ENT and Radiation Oncologist told me the radiation was a one time treatment.My ENT said by having the radiation I would have a 95% chance at a full recovery.You said you have acid reflux. My ENT told me he has four patients with the same problem I had. All four never smoked but all had acid reflux. Was laser surgery ever an option for you? Since going through all of this I have found there are doctors who have developed other forms of treatment.A doctor at Mass General uses a pulse laser to cut off the blood supply to the tumor causing it to die.Radiation is no picnic but after one year my voice is back to normal.One year from now you will be telling people how you beat cancer.GOOD LUCK and HANG TOUGH.0 -
My Opinion - Good Choiceluv4lacrosse said:GO WITH YOUR GUT FEELING
You most definitely have done your due dilligence. I am impressed by how much knowledge and research you have done in such a small amount of time. You are correct in saying you have to do what you think is right for you based on the level of trust / confidence you have in you advisors.
This just goes to show there is no such thing as a "one size fits all" approach to treatment.
Best of luck my friend.
Mike
FuzzyDoug,
Just my opinion, but looks like you did the research and came to a decisive conclusion. You seem to have a great attitude about everything and are confident and well informed. From what you described I would have come to the same decision (for what that is worth). Good luck and keep that attitude and good sense of humor and things will be cool.
Positive thoughts coming at ya!
Greg0 -
Hopefully, not so confused.Chas616 said:NOW I'M CONFUSED
First of all let me say how bad I feel that you have to go through this anxiety filled rollercoaster. From reading your posts and the amount of research you have done already I am sure you will make the right decision.Reading your post and some of the others raised a couple of questions in my mind.Last year I had SCC on both vocal cords.I had laser surgery and 29 radiation treatments.Wednesday was my one year anniversary.From the begining my ENT told me that he could not get all the cancer with the laser.He would have liked to remove more tissue but did not want to risk permanent damage to my voice.Both my ENT and Radiation Oncologist told me the radiation was a one time treatment.My ENT said by having the radiation I would have a 95% chance at a full recovery.You said you have acid reflux. My ENT told me he has four patients with the same problem I had. All four never smoked but all had acid reflux. Was laser surgery ever an option for you? Since going through all of this I have found there are doctors who have developed other forms of treatment.A doctor at Mass General uses a pulse laser to cut off the blood supply to the tumor causing it to die.Radiation is no picnic but after one year my voice is back to normal.One year from now you will be telling people how you beat cancer.GOOD LUCK and HANG TOUGH.
So in my case, I have no tumors or masses large enough to be picked up by PET or CT. All they have is the original cyst that was removed from my left arytenoid just above my vocal cord. The cancer was well encapsulated but when my ENT removed the cyst he thought it was just a cyst. He didn't remove additional tissue thinking it was cancer. Only the post laryngoscopy biopsy revealed the malignancy. There was a slight margin so we know he didn't get it all. There are certainly some malignant cells left. AND the cyst was surrounded by lymphocites causing some fear about the cancer spreading to my neck lymph nodes.
So for me there can be no laser removal of anything because there is nothing definitive to remove. No tumors, lumps or bumps. I'm told that PET and CT is as good as it gets for detecting specific cancer sites. But they only pick up cancerous masses bigger than about 5mm. That's literally just a bit bigger than this capital O you're looking at on your screen. So for me literally radiation and/or sugery is totally preventative because "it could still be there but we don't know for sure. We only know that it's still at the primary site".
I'm guessing that for you, your SCC was something definitive on your vocal cords, but the removal didn't damage the cords themselves so your voice is intact. Just zapped the tumor off your cords. My Oncologist/Surgeon was saying that for me, to be sure all the cancer is gone surgically, would involve removing most of the arytenoid to which the cord is attached (at the top). The arytenoid has the muscles that control the cord - if that's removed, you lose the ability to control one of your vocal cords and therefore dysphonia - your voice is damaged. The cords themselves are untouched, but the muscles moving one of them is removed causing ones side to be helpless.
None of my docs want to wait to see if any definitive tumors develop. By then it could already be in my lymphatic system and I go from T1 to T3 or 4. So it would be a broad-area blast of radiation to the throat and node area to kill any cancer cells that could be there. Could I be irradiating a perfectly healthy neck (except for the one little primary site) - YES! But it's a chance everyone wants to take. They all say they don't want to f around when my lymphatic system could be next.
As for the reflux... It causes repeated cellular damage, like smoking or HPV. Continous acid bathing. Repeated cellular damage with continuous cellular repair and regrowth can cause the DNA in the cells to go haywire and you get cancer. Barrett's Esophogus is considered pre-cancerous.
Since there's nothing definitive in me to cut out and they would cut out a "whole lot", I believe that irradiating the "whole lot" and augmenting it with low-dose chemo rather than cutting it out is the smarter way to go. It would have a higher chance of killing all remaining cancer and save my voice. Yeah it's no picnic, but it sounds like it's my best option.0 -
There seems to be so many directions these things come from. I have seen and heard of the reflux causing this Ca. I smoked for nearly 30 years. I am in the trades so I drank after work at the bar for the same. I had my surgeon tell me that is where mine came from. I also have been told it was from reflux. then yet another simply told me I drew a short straw, that we can only speculate where the ca came from. I was just one of the unlucky. Which sounds like your case as well. I understand the fear. I have had some rather intrusive surgery and it is and was no fun. after the spread that was in my lymphatic system and greater than 30% removed fully metastasized, I suppose I was thankful.There is a level of vanity that has been hurt.Bigfuzzydoug said:Hopefully, not so confused.
So in my case, I have no tumors or masses large enough to be picked up by PET or CT. All they have is the original cyst that was removed from my left arytenoid just above my vocal cord. The cancer was well encapsulated but when my ENT removed the cyst he thought it was just a cyst. He didn't remove additional tissue thinking it was cancer. Only the post laryngoscopy biopsy revealed the malignancy. There was a slight margin so we know he didn't get it all. There are certainly some malignant cells left. AND the cyst was surrounded by lymphocites causing some fear about the cancer spreading to my neck lymph nodes.
So for me there can be no laser removal of anything because there is nothing definitive to remove. No tumors, lumps or bumps. I'm told that PET and CT is as good as it gets for detecting specific cancer sites. But they only pick up cancerous masses bigger than about 5mm. That's literally just a bit bigger than this capital O you're looking at on your screen. So for me literally radiation and/or sugery is totally preventative because "it could still be there but we don't know for sure. We only know that it's still at the primary site".
I'm guessing that for you, your SCC was something definitive on your vocal cords, but the removal didn't damage the cords themselves so your voice is intact. Just zapped the tumor off your cords. My Oncologist/Surgeon was saying that for me, to be sure all the cancer is gone surgically, would involve removing most of the arytenoid to which the cord is attached (at the top). The arytenoid has the muscles that control the cord - if that's removed, you lose the ability to control one of your vocal cords and therefore dysphonia - your voice is damaged. The cords themselves are untouched, but the muscles moving one of them is removed causing ones side to be helpless.
None of my docs want to wait to see if any definitive tumors develop. By then it could already be in my lymphatic system and I go from T1 to T3 or 4. So it would be a broad-area blast of radiation to the throat and node area to kill any cancer cells that could be there. Could I be irradiating a perfectly healthy neck (except for the one little primary site) - YES! But it's a chance everyone wants to take. They all say they don't want to f around when my lymphatic system could be next.
As for the reflux... It causes repeated cellular damage, like smoking or HPV. Continous acid bathing. Repeated cellular damage with continuous cellular repair and regrowth can cause the DNA in the cells to go haywire and you get cancer. Barrett's Esophogus is considered pre-cancerous.
Since there's nothing definitive in me to cut out and they would cut out a "whole lot", I believe that irradiating the "whole lot" and augmenting it with low-dose chemo rather than cutting it out is the smarter way to go. It would have a higher chance of killing all remaining cancer and save my voice. Yeah it's no picnic, but it sounds like it's my best option.
I sincerely hope that your primary is found, and killed. I want no one to go through this.
Walk confidently into the direction of your dreams. Follow your instincts and continue to get the facts. Good luck to you Doug.0 -
nice fish!Chas616 said:NOW I'M CONFUSED
First of all let me say how bad I feel that you have to go through this anxiety filled rollercoaster. From reading your posts and the amount of research you have done already I am sure you will make the right decision.Reading your post and some of the others raised a couple of questions in my mind.Last year I had SCC on both vocal cords.I had laser surgery and 29 radiation treatments.Wednesday was my one year anniversary.From the begining my ENT told me that he could not get all the cancer with the laser.He would have liked to remove more tissue but did not want to risk permanent damage to my voice.Both my ENT and Radiation Oncologist told me the radiation was a one time treatment.My ENT said by having the radiation I would have a 95% chance at a full recovery.You said you have acid reflux. My ENT told me he has four patients with the same problem I had. All four never smoked but all had acid reflux. Was laser surgery ever an option for you? Since going through all of this I have found there are doctors who have developed other forms of treatment.A doctor at Mass General uses a pulse laser to cut off the blood supply to the tumor causing it to die.Radiation is no picnic but after one year my voice is back to normal.One year from now you will be telling people how you beat cancer.GOOD LUCK and HANG TOUGH.
can't tell from the pic. striper or salmon?0 -
IT'S A STRIPERtonyanddenise said:nice fish!
can't tell from the pic. striper or salmon?
Caught this fish on Veterans Day 2008. Last year was a bust not many fish and I really didn't feel like fishing. Hoping for a better Fall this year.0
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