Tongue Cancer just Diagnosed

Consequences
Hi, Stefan. A friend of mine named Tina asked that I take a look at this post of yours and give my own views.

It happens that I was in a similar boat back in June of 2005. I went to my doctor, not with an earache, but with a sore throat. He prescribed some antibiotics and I did them. They did not work. I went back. More, and stronger, antibiotics. You are apparently familiar with the process. It was not until the very end of August of that year that I called my doctor with the news that I could not eat, that I had a bump on my tongue so painful that it prohibited me from eating properly.

He urged me to come in immediately to his office and then advised me to head straight to ER at the local hospital. The rest, as they say, is history.

I frankly do not understand why others are questioning the need for surgery or urging you to get a second opinion. Some head/neck cancer survivors, to be sure, manage to do well without surgery. There are many on this very board who can testify to that. But some of us are very thankful that we had our surgery, that the surgery was then followed by chemotherapy and radiation, and that, five years or more later, we are all clear of the disease.

It is important, of course, that you trust your doctors. It is important that you take everything you read on the internet (including this very response) with a grain of salt. It is important that you gain as much knowledge about your disease and its consequences as you can, mainly through the doctors you trust (and if you do not trust them, get new ones). It is important that you understand the short term and long term consequences of whatever treatment you opt for -- and yes, you do have personal options. It is important that you realize that the consequences of your decisions now will likely affect not just the quality of your future of life but also, perhaps, its longevity.

It is a frightening time, I know, and you have to make some decisions that are frightening in their proportions, I know.

Know this, Stefan: some of us actually need surgery. Our doctors are not stupid. Our doctors are not out to rip us off but rather to save us.

Know this, Stefan: I was diagnosed with stage 3B squamous cell carcinoma, ultimately, at the end of August, 2005. I went through a 15-hour surgery (my docs were clever and I think used me as an experiment to be honest), four days of induced coma, seven weeks of daily radiation treatment to the head/neck area, and occasional chemotherapy (cisplatin, in my case).

I am all clear today, Stefan. I met ENT Man last month for the last time, all clear of head/neck cancer. All clear.

In my case, the reason for the long surgery was that they replaced a good portion of my tongue with meat and nerves from my left arm. The nerve transplant was what took so long, as I understand it. That is not likely to be part of your scenario.

In my case, the four days of induced coma was probably a requirement to let all of that heal without me flapping my notoriously busy mouth . I also had a radical neck dissection, by the way, because there was some activity in the lymph nodes there, too, so that might have been part of it. In any event, even among surgery survivors here, I have yet to hear of anyone going to the extremes my docs did with me.

But I love those guys.

I am all clear.

There is fear, of course, Stefan. There is doubt. There is perhaps depression, anxiety, all of the normal reactions to being told you are going to die (which is probably what it sounded like to you). It is natural, Stefan.

There is no guarantee, of course, that by following your doctors' advice and going for the surgery, you will be cancer-free in five years. And since I am not a doctor and don't even play one on TV, I can't compute your odds, with or without the surgery. I can only tell you what I have explained above, that it worked for me.

I can only tell that among the people in the head/neck cancer community that I know who have lived longest, and this is just me, almost all opted for surgery and follow-on 'slay the strays' treatment, chemo and/or radiation therapy.

IF you opt for the surgery, don't get me wrong, the road back will be a tough one. Those who deal with it through chemo and/or rads are much quicker to come back to eating regularly, for example. I had a PEG tube for four years, Stefan, and probably should have kept it longer.

Learning to eat again has been a process, sometimes a frustrating experience not just for myself but for my entire family. Had I opted "just" for chemo/rads, I am fairly certain this process would not have taken so long, just based on reading the stories of others in this board.

In the final analysis, Stefan, and maybe this is just me, surgeries are not so painful. You typically sleep through them while your loved ones suffer, wondering about how you are doing. With proper pain management, good support from your loved ones, and the will to make it through it, you can survive surgery and any subsequent treatments and move on with your life successfully.

Regardless of the road you take, by the way, it is fairly certain that you will be living a 'new normal' as people on this site like to say.

None of us can tell you what you to do (although your doctors are probably likely candidates for the best advice). Why my friend Tina asked me to talk to you I am not sure except that I have been where you are at and chose surgery and all that came with it and am glad that I did so.

Whatever you decide, know that all who have responded mean you the very best, and all of us fervently hope that you beat the disease and are able, five years from now, to give advice of your own to who will sadly be the newest members of the club.

Hope and Humor!

Take care,

Joe