Hello everyone,

Hope you all had a nice holiday weekend. I'm finally posting my first message, even though I've been lurking around this website for some time now.

I have a family member that has late stage tongue cancer. He's being treated at MDACC. His tumor measures 4cm and is in two of his lymphnodes. After reading so much about this cancer I'm left wondering if anyone with stage III/IV tongue cancer make it past five years? I can't believe such a devastating disease has so little awareness. When I first found out about it, I thought certainly they can remove it from his tongue and he'll be fine....wow, was I ever wrong. Is it fair to say that the 50% of people who survive this cancer are the ones that found it in the earlier stages. I know Brian is a survivor, but who else?

I know the cancer is called squamos cell carcinoma, but are there different kinds of cancer under that general title that would make a difference to whether or not the patient can beat it? His is very agressive from what I understand. They are treating him with three rounds of chemotherapy and than doing surgery. After that they may or may not use radiation. The protocol is to not use it, but if he needs it than they will go that route.
Anyone ever hear of this study?

Thanks so much in advance for taking the time to read my message and for replying. It's so wonderful to have a place to come and talk with those who understand how awful this can be. As you can probably tell, I'm so scared of what the future holds.

My heart and prayers go out to each and every one of you!

Hi Neil,
and welcome to the site, sorry you have to visit us under these circumstances. Squamous cell carcinoma is a specific type of cancer. It's aggressiveness depends on many variables: staging, genetics, health habits, HPV or Epstein Barr virus, sex, race, (and just plain luck also) etc. and there are probably others.

I wouldn't want to second guess his treatment protocol at MDACCC. They are in the top comprehensive cancer centers in the US. I would trust that he is in the best possible hands. I would still do my homework and ask lots of questions however - it really is helpful to be your own, or have a dedicated, patient advocate.

Your raw statistics are a little skewed. The 5 year survival rate depends on the stage and other elements of the TMN scoring system.

Stage 1 typically has a 80% five year survival rate. Stage IV 38%. These numbers do not take into consideration botched diagnosis and/or treatment, health habits, age, whether the treatment was state of the art (like you would receive at MDACCC) or some treatment protocol that is 20 years old like you might receive in a local small unspecialized treatment center in Podunk, Iowa (fictional).

There are no rules. Stage I people here have died and stage IV have survived. A healthy positive attitude and ability to complete treatment is one key to survival. My radiation oncologist gave me an 80% chance of 5 year survival and I'm going with her numbers.

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Hi Neil: Like you, I have a family member (brother) with tongue cancer and this is my first post, too, although, again like you, I have lurked for a while. Because my brother is not very communicative (except w/his wife), I have made an effort to learn about this disease so I could be supportive/useful/whatever to my brother & his family.

To answer your question, in my search for information I have found, on the internet, people who have lived 8-10 years w/out reoccurances. Not many, but I did find a site (don't remember much about it, found it using google)that was a transcription of a radio program & one of the participants was a Dr. who had survived tongue cancer (or oral cancer, I seem to remember he had the same as my brother - cancer at base of tongue) 10 years at that point. The other participants were also oral cancer surviviors and I seem to recall (but not strongly) that one of them had survived 8 years and the other less time but still noteworthy (4 years? 5? Don't recall).

I have done a fair amount of research in the last year & almost a half, and have several college degrees (social sciences), so I think I understand most of what I read. So, that said, what I have learned is that oral cancer is a virulent cancer but some DO survive it.

My own theory (unsupported by data) is that those who survive had fewer risky behaviors (e.g., were not smokers) or were detected early or have good genes. There is not enough known about the causes of cancer (besides the more obvious like tobacco)to explain differential survival rates.

I personally don't believe in a god nor in prayer, so I look for more concrete explanations for survival (e.g., fewer risk factors, better health at diagnosis), but I could be wrong (it won't be the first time). Maybe some 'God' decides that some will live and some will die. There are no data either way (from my perspective). I do respect the right of other people to believe whatever they want.

I would like to say at this point that, after watching my brother deal w/this horrible disease, and after reading so many posts by people at this forum, that I am impressed by the bravery of all of these oral cancer survivors. You guys are so awesome! I have learned more than I ever wanted to know about cancer in the last year & almost a half and I am still impressed by how brave you all are in the face of such a disease.

Candace, Davis, California
sister of man who had tongue cancer, diagnosed 4/03, finished tx 9/03. Eleven clear exams. He is a nonsmoker, fairly heavy drinker, vegetarian, very fit man of 57.

Neil and Candace,

I have to agree with Gary on a couple of points. First, there are so many factors that can affect survival rates, it's impossible to predict from the staging alone. Also, an important consideration is where and how the patient is treated -- I'm convinced based on what I've read here over time that the chances are improved when the treatment is at a major cancer center.

It's been 15 years since my cancer "experience". While the stage of my tumor was not as advanced as Neil's family member, it was an instance where the diagnosis was delayed for quite awhile because of several doctors who were convinced it was nothing to be concerned about. When I finally did get a referral to a comprehensive cancer center, fortunately I ended up with a team that pushed for all-out treatment, and with hindsight, I have to agree with what they did.

Cathy

Neil and Candace,
I agree with what has been said already, that there are probably as many different statistics as people with oral cancer. I will say, however, that a great support system and a belief does help one be strong during this fearful time. I think God does allow things to happen, good and bad, but does not cause them. We are a fallen world and do many things to harm our bodies. I don't know what will happen in our family, but I do feel God's presence and I know he hears me when I cry to him about how I feel. If we didn't have the belief in God and know he holds us in his hands, I don't know how I would get thru this.
God bless and take care,
Debbie

Neil, one definite factor regarding survival is if one continues to smoke or chew, or drink more than just a wee bit. Those who do continue (or begin) these behaviors, and there are many, cause the survival statistics to look worse than they actually are for those of us who do not. Rather than looking for comfort in numbers, remember that each person is his/her own statistic with no connection to anyone else's situation. As Gary says, MDACC is a very highly rated and experienced institution, so that helps the odds too. Information truly is power, but occasionally one can suffer from overload, so step back when you need to. We will still be here when you are ready for more.

Neil,

Ditto with everything mentioned so far. I think logically (for you Candace ) if you take what Joanna says and extrapolate a bit, if you continue any behavior that contributed to cancer in the first place and continue it, you are at an even higher risk of cancer. The worst part of this theory is that you will never know what caused your cancer initially. I am sorry to hear of your family member and your brother, Candace. It is so difficult to even see a stranger battle this horrible disease and rougher yet to see someone you love going through what they have to in order to fight this disease.

As for the statistical side, I believe all of us will live until we die and none of us know for certainty when that is. I will never wonder if any of us will not be alive in five years!

Ed

Wow, all I can say is that I'm thrilled to have received so many positive replies to my post. I'm going to print this, and whenever I'm feeling unsure about what the future holds I will read what all you wonderful people wrote.

Thanks so much for taking the time to read my post and offer such great advice.

I will keep all of you in my prayers.

Neil, Indeed what Gary has said is true: people die from this disease stage 1 and people survive stage 4. The best thing is to believe in the possibility of surviving, and living each day as though it might be the last (and enjoying every second).

You will never hear me bragging about having beaten cancer. I simply know that I got up today and had a fairly normal life. What happens tomorrow remains unknown.


To Candice,

Part of the reason it is hard to find survivors on the internet or anywhere is because they aren't making a big deal about it. They have moved on and are coping with their "new normal" another reason is that this cancer is more prevalent in older populations. These people are, as a group, not yet computer literate.

Take care

Mark,

I think you're probably right about people who have survived longer trying to "move on". I thought I had done that, and I wasn't aware this site existed until a friend was diagnosed with oral cancer earlier this year and I started looking on the web for some current information to help him.

Cathy

Neil,
I, like Brian, was Stage IV, base of tongue and 3 neck nodes and was treated at MDACC. I am doing fine after 2 years. Who knows what the future holds? The bottom line is that I am enjoying life now.

Candace,
Welcome to the board. I really appreciate your intelligent,informative and objective approach to the situation, not to mention your writing skills and vocabulary. The "everything happens for a reason" scenario is total nonsense to me. I don't want to get into a religious debate here, but I find it refreshing to hear from someone who applies her mind rather than blind faith to the situation that your brother and many of us on this board face.

Danny G.

Neil,

Welcome to the forum. That was one of the first questions I asked. (HOW LONG) The problem is no one knows. Everything Gary and Mark said is true, Live each day the best you can!!
Who knows when the bus will hit you. The hardest part for me is to not focus on the end and what it will be like. But rther focus on each day I have and enjoy my family and friends as much as I can.

Candace,

Welcome to the club nobody wants to join! Bet you heard that one before! I like your no none sense approach to the causes and treatment of this diaease.
It is refreshing. I love a realist and an honest one at that
The longer you lurk the better you get to know so many different members. Every time we lose a member to this bastard of a diaease it is another piece of me gone. Thats how much I've
grown to love the OCF and it's members.

Best Wishes, Your Friend, Danny Boy

The statistics I found, either at the NCI or ACS site (don't remember) show the following survival rates for head and neck cancers:

1 yr = 81%
5 yr = 56%
10 yr = 41%

On an individual level, these figures don't mean jack sh$#. Only in large populations do statistics become significant. I had stage IV disease with node involvement, yet my docs gave me a 70-75% shot at 5 year disease-free survival. I'm over 8 months post treatment and my check up last month was all good news. While the experience has certainly rubbed my nose in my own mortality; emotionally, every night I still expect to wake up tomarrow and press on with life.

-Brett

Neil and Candace, Welcome to the site. If you both have been "lurking", you have already gotten a chance to experience some of the benefits of the site, and that's a good thing.
Neil: We in South Florida had a very poor labor day weekend, thanks to a visit by Frances, right after her friend, Charlie had been by and now we have her other friend, Ivan to look forward to on this coming weekend so it should be less than fun also. However, that's enough crying about the weather. I had a stage IV tonsil cancer with mets to the lymph nodes and have survived so far (only 6 months since surgery). My treatment was tonsilectomy, chemo/rad, then surgery. By the time the surgery occurred, the tumor in the lymph node was so reduced in size, I only needed a modified right neck dissection instead of a major surgery including jaw removal and loss of use of arm which is what was once done according to my team. So whatever they tell your family member, the Anderson guys know what they are doing, so be as supportive as possible and he/she will make out as well as can be hoped given the team there.
Candace: Sorry about your brother. My cancer was in my tonsil, which is a little different than his, but the treatments are similar. Please remember that a lot of survivors of this disease don't read or contribute to sites like this as they are too busy living their lives and often don't contribute. At least, that is my unsubstantiated opinion. As far as risk factors and "God's that determine who lives and who dies" goes, I can say that I had many risk factors including smoking, drinking, lack of rest, and others, and yet I have been allowed to survive to this point and plan on checking out in 30 to 40 years, when it is my time. I have maintained a positive attitude during this disease and treatment primarily through my belief in a supreme being which allows me to concentrate on the details while He takes care of the plan for me. This is very positive for me and has helped me through some very rough spots. I understand you learning more about this nasty disease than you ever wanted to know, I think we all have. Meanwhile, I will pray for both of your family members and that each of you will be able to support them as much as possible.

I think everyone here has replied well to this post and there is little that I can add. I did put up some new pages last week related to statistics, getting a second opinion, and staging and survival, they and the links to them can be found at http://www.oralcancerfoundation.org/facts/stages_cancer.htm
One thing is certain though, and that is life doesn't come with guarantees, absolutes, or warrantees.

Whether my days are good or bad, whether I'm feeling physically well or poor, whether I have just accomplished something that has taken a year to put together like the Paltrow TV spot that I filmed at Showtime/Sony yesterday and I'm feeling like I made some real progress, or I come home to a horrible phone call from a friend who will not make it, I TRY, each day to live in that moment, to enjoy the successes however small, to learn from the emotional and physical pains my own or those of others, and to relish that I am still here, doing something that I feel is important... privileged to share the love of many good friends, the companionship of interesting and knowledgeable people, and the satisfaction that the day has not been wasted. Be they 100 or 1000 days left in my future, the important thing is to live them fully without compromise in an endeavor that is worthy of the time that I have, with people I love. In the end the numbers and statistics mean nothing.

Brian, very well said and inspiring too. I have long thrown away the issue of statistics and survival. Believe it or not, ever since my diagnosis I have never asked my doctor how long I can live although I am also concerned about it. But who knows?

Karen.

You know what guys ...you could get run over by a bus tomorrow...ya just dont know. Lets just get on with living.

Take care and watch out for buses...
Marica

Marica,

You're right. Soon after I finished my cancer treatment I was crossing a street (within a crosswalk) in downtown Boston. If you know about Boston drivers, you know that's a hazardous move. I had a near miss with an impatient driver who almost ran me over, and I realized at that moment that my risk of being a pedestrian fatality in this city was probably greater than dying from cancer.

Cathy

Hey Cathy..glad he missed you..stay nimble!

Take Care
Marica

Snoopy,I'm so sorry to hear of your relative's diagnosis.Thirteen months ago I also was given a Stage IV diagnosis,base of toungue-tonsil cancer,mets to left side lymph nodes[1 at 4cm.+3 others smaller].Before and during treatment I did not really expect to survive.In fact this site was my only thin strand of hope on the days I felt well enough to check in.Thank you all so much! But I'm still here and my checkups are great[no cancer].I'm getting to the point that my cancer is not a foucul point-my life is full of kids,grandkid,cats ,dogs and soon school because I plan on living.IT was not a death sentence!ENcourage your kin and be there to hold hands when treatment gets rough find out what you and the drs.think is the best treatment[I had chemo altho my radioligst thougt I might not need it after my chemo dr suggested it]Be proactive and hold on........you are in my prayers,Sue