Surgery w/ or Rad/chemo only

daleinBKK

I was diagnosed 8 days ago, Base of Tongue cancer spread to lymph node. Cancer has not crossed the baseline, but it is big. T2-4,N2b. I am 60 years old. As a young man I was an infantryman in the 101st Airborne division facing violent death everyday. I am more afraid now than I was then, which is saying a lot.

I live outside the USA in Bangkok, Thailand. There is a GOLD Standard hospital with USA trained Thai doctors. There is one well qualified ENT Head and Neck surgeon. There are well qualified Oncologist and Radiology Departments with rooms full of current technology. When I went to the diagnosis appointment I went with my wife, and two friends, an American Psychiatrist and an American Anesthesiologist. Many questions were asked and answered. In one day I met and consulted with my Oncologist, A cancer radiation doctor, a surgical ENT and for good measure had a molar extracted. (Some have told me that this is virtually impossible in a big American hospital). I backed up all the questions and answers with hours of internet time and mind calming meditation. I am still struggling with deciding what to do, because I haven't consulted with real survivors, only references to "patients" from doctors.

Please help me. I fear the base tongue surgery that will remove half my tongue and the attendant radical neck dissection. I am good with the prescribed concurrent Radiation and Chemo (35 rad, 3 chemo) but am told that it is not a cure. If any people who had the surgery are reading this, please tell me what your experiences are/were with surgical recovery and how much the surgery has affected your speech function and swallowing. Experience with results of speech therapy would also be appreciated Also, I can't find info on the number of surgical complications and what they might be.

Finding this website was a sort of salvation for me. I read many discussions and praise the people who have taken the time to participate giving valuable time and information. I hope that during whatever time I have I can live up to your example.

Dale

ratface

Lets take a look at your numbers
T2-cancer is larger than 2cm across, but smaller than 4cm, about 1 1/2 inches
T4- Tumor invades nearby stuctures such as bone, connective or muscle tissue of the neck, deep muscle of the tongue, skin, sinussses or the larynx

N2B-the cancer has spread to multiple lymph nodes on the same side as the primary tumor, but none are larger than 6cm across.

You need a third part, the 'M' category. it is most likely

MX-presence of distant spread cannot be assesed.

Your staging is therefore:

T2-4N2B-MX

In comparison my staging was T1N2BM0 and I had 39 rads, 3 chemo regimes, and a selective neck disection. Your nine years older than I am. If your in resonably good health all of that is doable.

First it sounds like you are in good hands. Second, my personal opinion only, surgery is always the best option if available for those seeking a cure. I was told my treatment could produce a cure without tongue surgery. You have a more invasive cancer and it appears that they are offering a cure. Your one lucky SOB. Those are the words you want to hear. That being said no one is doing surgery on my tongue without a second opinion. I would be on the phone to MD Anderson or Sloan Kettering, Mayo, or Univesity of Chicago to their top ENT person. You are shopping for a surgeon. All the other stuff can be duplicated where you are. Get copies of all your records and films and contact these ENTs by phone and stress the urgency of a response. Ask Your current ENT for a recommendation who he/she might be able to consult by phone with. take the bull by horns, enlist the help of your friends, make the calls.

I'm sure Soccorfreaks will be along shortly to offer wisdom on the tongue surgery. Also the oral cancer survivor site is an excellent resource.

I know your scared but they told you they can cure it. don't lose site of that. Appreciate your military service and that may be another source of treatment options.

soccerfreaks

Seconding the motion
Dale, I concur with RF with respect to the notion of going with surgery when it is considered the best option for complete recovery.

I am a stage 3 Squamous Cell Carcinoma (SCC) survivor; I had cancer in my tongue and in lymph nodes in my neck. I was 48 when diagnosed.

While I was offered just radiation and chemotherapy as an option, it was strongly recommended by a number of doctors involved with my case that I go through with the surgery if I wanted to make my best run at beating it.

Like RF, apparently, I am of the opinion that I am not interested merely in attacking it but of getting rid of it completely if at all possible, and so, for me, the best option was to do the surgery, which is another way of saying that neither radiation therapy or chemotherapy, at least then, is/was up to the task of targeting and killing all of the bad cells, while surgery, hopefully, would remove it.

Of equal importance: I was advised if I deferred the surgery in hope that rads and chemo would get the job done, if that proved not to be the case it was highly unlikely they would then be able to do the surgery (the surgery they were thinking of doing) due to the negative impact on tissue particularly from the radiation. Which is to say, Dale, it was now or never for the surgery.

In my case, I had a radical neck dissection (wherein lymph nodes, some of them malignant, were removed) along with a reconstruction of the entire right side of my tongue, using muscle AND nerves from my left arm, from the wrist up to the elbow.

I think it was the complications involved with transplanting nerves that made it take so long, but in any event the operation took somewhere around 15 hours and was followed by four days of induced coma. I was out of the hospital within two weeks of entry, however, and well on my way to recovery.

To answer your specific questions, bearing in mind that my surgery occurred in October of 2005, followed by seven weeks of daily radiation therapy and occasional chemotherapy (cisplatin) as well, I DO have a speech impediment, although I do not like to refer to it as an impediment. Let me say that if we met, when you first heard me speak you might suspect I was drunk (and if I wasn't, I could blame it on my surgery ). Hard consonants are the main culprit, your hard Gs, your hard Ks. But I am very much understandable, and have even given eight-hour Powerpoint presentations to a bunch of DOD types, the first within six months of that surgery.

I DO have eating issues. I cannot yet manage things like steak and roast beef, really, not to my liking, although I can get them down if I work at it.

I can no longer whistle, for some odd reason, and I cannot kiss the way I did before.

Eventually, I did contract a second case of SCC in my right lung. This was diagnosed in June of '07, removed in January of '08, and I am now and have been since then, NED (no evidence of disease).

They were not able to tell, even after biopsy and lobectomy, whether the cancer in my lungs was metastasis or new cancer. My hope, our hope, frankly, was that it was new. So far that seems to be the case.

This is clearly a very personal decision, Dale, and noone can tell you what is best for you. I would suggest, though, that today 60 is the high end of middle age, and that you have many quality years ahead of you.

As is noted frequently on this site, results vary from person to person. And there have been surprisingly significant strides made in treatment (particularly with respect to radiation and chemotherapy, it seems).

The bottom line, to my way of thinking, is that if you trust your doctors you should follow their lead. If you do not trust them, then you should find new doctors.

As of today, I would not undo any of the decisions I made then, for what it is worth.

Best wishes with your choice and with its outcome. We are here for you.

Take care,

Joe

ratface

soccerfreaks said:

Seconding the motion
Dale, I concur with RF with respect to the notion of going with surgery when it is considered the best option for complete recovery.

I am a stage 3 Squamous Cell Carcinoma (SCC) survivor; I had cancer in my tongue and in lymph nodes in my neck. I was 48 when diagnosed.

While I was offered just radiation and chemotherapy as an option, it was strongly recommended by a number of doctors involved with my case that I go through with the surgery if I wanted to make my best run at beating it.

Like RF, apparently, I am of the opinion that I am not interested merely in attacking it but of getting rid of it completely if at all possible, and so, for me, the best option was to do the surgery, which is another way of saying that neither radiation therapy or chemotherapy, at least then, is/was up to the task of targeting and killing all of the bad cells, while surgery, hopefully, would remove it.

Of equal importance: I was advised if I deferred the surgery in hope that rads and chemo would get the job done, if that proved not to be the case it was highly unlikely they would then be able to do the surgery (the surgery they were thinking of doing) due to the negative impact on tissue particularly from the radiation. Which is to say, Dale, it was now or never for the surgery.

In my case, I had a radical neck dissection (wherein lymph nodes, some of them malignant, were removed) along with a reconstruction of the entire right side of my tongue, using muscle AND nerves from my left arm, from the wrist up to the elbow.

I think it was the complications involved with transplanting nerves that made it take so long, but in any event the operation took somewhere around 15 hours and was followed by four days of induced coma. I was out of the hospital within two weeks of entry, however, and well on my way to recovery.

To answer your specific questions, bearing in mind that my surgery occurred in October of 2005, followed by seven weeks of daily radiation therapy and occasional chemotherapy (cisplatin) as well, I DO have a speech impediment, although I do not like to refer to it as an impediment. Let me say that if we met, when you first heard me speak you might suspect I was drunk (and if I wasn't, I could blame it on my surgery ). Hard consonants are the main culprit, your hard Gs, your hard Ks. But I am very much understandable, and have even given eight-hour Powerpoint presentations to a bunch of DOD types, the first within six months of that surgery.

I DO have eating issues. I cannot yet manage things like steak and roast beef, really, not to my liking, although I can get them down if I work at it.

I can no longer whistle, for some odd reason, and I cannot kiss the way I did before.

Eventually, I did contract a second case of SCC in my right lung. This was diagnosed in June of '07, removed in January of '08, and I am now and have been since then, NED (no evidence of disease).

They were not able to tell, even after biopsy and lobectomy, whether the cancer in my lungs was metastasis or new cancer. My hope, our hope, frankly, was that it was new. So far that seems to be the case.

This is clearly a very personal decision, Dale, and noone can tell you what is best for you. I would suggest, though, that today 60 is the high end of middle age, and that you have many quality years ahead of you.

As is noted frequently on this site, results vary from person to person. And there have been surprisingly significant strides made in treatment (particularly with respect to radiation and chemotherapy, it seems).

The bottom line, to my way of thinking, is that if you trust your doctors you should follow their lead. If you do not trust them, then you should find new doctors.

As of today, I would not undo any of the decisions I made then, for what it is worth.

Best wishes with your choice and with its outcome. We are here for you.

Take care,

Joe

Robotic surgery
Dale

I remember reading about robotic surgery for base of the tongue and see that it is offered at Mayo. I don't know if you are a candidate for this. I would ask my current ENT. Also although you have an urgent decision to make you have time to research some options. Your cancer has probably been growing for about 3 years. For some reason I don't know how to get the links to work right but here is the address so you can copy and paste.


http://www.mayoclinic.org/transoral-robotic-surgery/

soccerfreaks

soccerfreaks said:

Seconding the motion
Dale, I concur with RF with respect to the notion of going with surgery when it is considered the best option for complete recovery.

I am a stage 3 Squamous Cell Carcinoma (SCC) survivor; I had cancer in my tongue and in lymph nodes in my neck. I was 48 when diagnosed.

While I was offered just radiation and chemotherapy as an option, it was strongly recommended by a number of doctors involved with my case that I go through with the surgery if I wanted to make my best run at beating it.

Like RF, apparently, I am of the opinion that I am not interested merely in attacking it but of getting rid of it completely if at all possible, and so, for me, the best option was to do the surgery, which is another way of saying that neither radiation therapy or chemotherapy, at least then, is/was up to the task of targeting and killing all of the bad cells, while surgery, hopefully, would remove it.

Of equal importance: I was advised if I deferred the surgery in hope that rads and chemo would get the job done, if that proved not to be the case it was highly unlikely they would then be able to do the surgery (the surgery they were thinking of doing) due to the negative impact on tissue particularly from the radiation. Which is to say, Dale, it was now or never for the surgery.

In my case, I had a radical neck dissection (wherein lymph nodes, some of them malignant, were removed) along with a reconstruction of the entire right side of my tongue, using muscle AND nerves from my left arm, from the wrist up to the elbow.

I think it was the complications involved with transplanting nerves that made it take so long, but in any event the operation took somewhere around 15 hours and was followed by four days of induced coma. I was out of the hospital within two weeks of entry, however, and well on my way to recovery.

To answer your specific questions, bearing in mind that my surgery occurred in October of 2005, followed by seven weeks of daily radiation therapy and occasional chemotherapy (cisplatin) as well, I DO have a speech impediment, although I do not like to refer to it as an impediment. Let me say that if we met, when you first heard me speak you might suspect I was drunk (and if I wasn't, I could blame it on my surgery ). Hard consonants are the main culprit, your hard Gs, your hard Ks. But I am very much understandable, and have even given eight-hour Powerpoint presentations to a bunch of DOD types, the first within six months of that surgery.

I DO have eating issues. I cannot yet manage things like steak and roast beef, really, not to my liking, although I can get them down if I work at it.

I can no longer whistle, for some odd reason, and I cannot kiss the way I did before.

Eventually, I did contract a second case of SCC in my right lung. This was diagnosed in June of '07, removed in January of '08, and I am now and have been since then, NED (no evidence of disease).

They were not able to tell, even after biopsy and lobectomy, whether the cancer in my lungs was metastasis or new cancer. My hope, our hope, frankly, was that it was new. So far that seems to be the case.

This is clearly a very personal decision, Dale, and noone can tell you what is best for you. I would suggest, though, that today 60 is the high end of middle age, and that you have many quality years ahead of you.

As is noted frequently on this site, results vary from person to person. And there have been surprisingly significant strides made in treatment (particularly with respect to radiation and chemotherapy, it seems).

The bottom line, to my way of thinking, is that if you trust your doctors you should follow their lead. If you do not trust them, then you should find new doctors.

As of today, I would not undo any of the decisions I made then, for what it is worth.

Best wishes with your choice and with its outcome. We are here for you.

Take care,

Joe

Correction
My statement:

"the best option was to do the surgery, which is another way of saying that neither radiation therapy or chemotherapy, at least then, is/was up to the task of targeting and killing all of the bad cells, while surgery, hopefully, would remove it"

could easily be taken in a way differently than I meant it. It is clear to me that radiation therapy and chemotherapy do a wonderful job of destroying SCC in a large number of people. Even to the point, I advise, that I recently asked my own ENT Man why it seems that no one is getting the surgery any more (based on my informal survey in this joint ). His quick response: "We stay busy."

The surgery option IS dependent on any number of factors, and is certainly not a requirement for surviving cancer in many cases, as many of the people who post on this board can attest.

In my own case, I had the surgery and followed that with radiation and chemo to clean up any strays, so to speak. I like that approach, personally, and approved it again when cancer was discovered in my lung.

But it is not the be-all, end-all. It is all so specific to individual circumstances.

Just wanted to clear that up.

Take care,

Joe