From all I read, it seems that the recurrence rate for base of tongue cancer is high, be it one year or twenty years after initial diagnosis/treatment. Is there a such thing as a "permanent cure"? Can/does ANYONE who gets the "all clear" after treatment of tongue cancer actually make it to old age without another occurrence? (I'm suspecting not... because nothing is ever written about them) ???


The title of Melanie's topic was edited to make it more 'searchable'

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Melanie

We don't know the answer as none is keeping tabs on these survivors longer term. Some will survive, and the percentage will decrease with time as the time frame for a recurrence is longer! The problem then, of course, is whether it is a new cancer rather than a recurrence. Perhaps now with this message board, some survivors out there wiil be able to 'say hi' and be counted.

Best wishes
Vinod

Thank you, doctor.

Then... let me begin the "crusade" to get some more GOOD NEWS on this site... by CALLING ALL PEOPLE WHO ARE AT LEAST FIVE YEARS OUT, WITH NO RECURRENCE OR NEW CANCERS! I want to hear from some really OLD (excuse that adjective) people who had tongue cancer a LONG LONG time ago... and is STILL CANCER-FREE! ARE YOU OUT THERE? Does anyone communicating via this site know of someone who is a particularly long time past his/her diagnosis/treatment that never had a recurrence? If so, please tell me about them... or, better yet, encourage them to personally share their own story on this bulletin board. I want to know every detail as to how and what they are doing. I'd like to know in what stage their cancer was discovered and how it was treated. And I'd like to hear their advice or secrets for coping through the years with the knowledge that tongue cancer does have a tendency to return.

Now... just to vent... I HATE CANCER WITH EVERY FIBER AND OUNCE OF MY BEING, DOWN TO THE VERY DEPTHS OF MY SOUL!!!! Whewww... that felt good

This message has been edited. Last edited by: Melanie,

Hi Melanie
Don't know if it comes under the same heading but I have met a laryngectomee at work who had surgery 25 years ago, has had 1 recurrence which was treated with radiotherapy.
Jennie sankey

Melanie, I had tongue cancer in 1989, then again in 1999, then again in 2001. I am now CANCER FREE------A--G--A--I--N-----!!!You can read my story in the Blogs on this site. I am Vicki Lynn. I would like to think that I AM A SURVIVOR!! That the CANCER that has come back is not the same as the first one or the second. I HAVE CANCER!! End of story. I will ALWAYS have CANCER!! There is no telling where or when or if it will ever POP UP again. Until then I am trying to live the life that has been dealt to me. Everyone that has ever had Cancer invade their lives feel EXACTLY how you do...EXACTLY. Vicki Lynn

Vicki Lynn,

Thanks for sharing about yourself. (By the way, how does one find Blogs on this site? I'd like to learn more about your experience, but don't know where to look for your story.)

I guess the reason I'm so afraid of recurrence is because of things we've learned locally about limited to no treatment options for the second time around. It's my understanding that, once you've had radiation for base of tongue cancer, you cannot have it again to the same area (if another tumor comes up on the original site) because the tissue would simply die. So, because radiation is apparently not feasible (and it's considered the best option/hope for B.O.T. cancer), I'm told that the options for recurrence treatment are pretty slim. I'm also told chemo alone is essentially ineffective... (It may slow the cancer, but not get rid of it?) I guess this is when doctors start using the word "salvage", as in "salvage surgery"... removing portions of or the entire tongue. Horrible! And, even then, I've heard that it likely will not control the cancer for long. One website I visited described base of tongue cancer as "lethal", (based, I suppose, upon the probability of recurrence without a lot of options for treatment after having radiation the first time). I realize that many websites are not trustworthy sources (hard to know which is which), but true statistics on base of tongue cancer are just nowhere to be found.

So, my question to you is (if you care to answer considering these are personal inquiries)... How were you treated for multiple recurrences to be at the point (once again) of "cancer free" status. Did you get radiation the first time? Have you had any/all of the tongue removed?

Is it also your understanding that base of tongue cancer recurrence is highly probable, (perhaps even inevitable at some point)? Do you think it's more often than not that people have a recurrence? Have you personally heard of anyone with base of tongue cancer to never have a recurrence over the course of, say, twenty or so years?

I am so glad to know that you have beaten (or kept at bay?) this cancer multiple times. It's encouraging, yet scary at the same time. Have you been told what options are available if you, God forbid, suffer yet another recurrence? If you do not wish to "go there" to answer my questions, I completely understand. (It almost feels as though I'm "invading" in a big way as it is, and also introducing rather negative subjects! I do apologize if I've ventured overboard. I just so badly want the truth, even if it's not pretty, if the truth is known. I hope you understand.)

Was your cancer on the part of the tongue that is visible when the mouth is open, or at the tongue base, way back, like my husband's?

I've peppered multiple questions throughout this email, so it'll probably be hard to respond to everything. Whatever information you can provide will be greatly appreciated, Vicki Lynn. I also hope the site doctor will read this, too, and respond with anything he might be able to add.

Thank you in advance... so very much! This means a lot to me.

My best to you,

Melanie

See: MOUTH CANCER PATIENT EXPERIENCES

quote:

"When I was very ill and things looked their worst, nothing was more inspiring to me than reading about how other patients survived against the odds and coped with their situations."
Steve Dunn of CancerGuide.org

See: Statistics about Tongue Cancer


See: Malignant Tumors of the Base of Tongue

quote:

OUTCOME AND PROGNOSIS:
Treatment results for carcinomas of the base of the tongue are measured in terms of speech and swallowing function; the need for gastrostomy or tracheostomy tubes; local, regional, or distant control; and patient survival and quality of life. Historically, patients with advanced-stage disease have been treated with surgical resection and postoperative radiotherapy. Considering all stages, locoregional control rates approach 70-85% versus 50-75% with stage 4 disease following partial glossectomy, neck dissection, and postoperative radiotherapy. Overall survival rates range from 50-65%, with improved survival with early-stage disease. Even in the presence of advanced-stage disease, the mandible and larynx can be preserved in 80% of patients.

Patients with positive surgical margins are at high risk of locoregional failure and death from disease. Among patients with positive or close margins, postoperative radiotherapy doses of 60 Gy or more achieve excellent long-term local control rates. Complications for this approach include pharyngocutaneous fistula and chronic aspiration. Long-term functional outcome data demonstrate decreasing function with increasing T stage following surgical resection. The prevalence rates of regional and distant failure are approximately 20% and 30%, respectively. The actuarial incidence rate of a second primary malignancy of the upper aerodigestive tract is approximately 35% at 5 years.

In an effort to decrease the alteration in speech and swallowing function associated with extensive surgical resection of the base of the tongue, external radiotherapy alone or in combination with brachytherapy and/or neck dissection has been used as a treatment strategy. The best local control rates at 5 years with external radiotherapy alone are, for T1, 96%; for T2, 91%; for T3, 81%; and for T4, 38%. Similarly, brachytherapy alone is effective for lesions smaller than 4 cm, but extensive lesions have reported local recurrence rates of as high as 50-60%. Improved local control rates approaching 80% can be achieved with the combination of external and implant radiation for T1-3 lesions.

The addition of a planned neck dissection for patients with clinically evident regional lymph node metastases offers statistically significant improved regional control (80-90%) and disease-specific survival. A brachytherapy boost (20-30 Gy) to the base of the tongue can be performed at the same anesthesia level used for the neck dissection with temporary tracheostomy.

The addition of chemotherapy to the management of advanced base of tongue carcinoma is ongoing, and the results from this treatment option are not widely reported in the literature. The 5-year disease-specific and absolute survival rates of 50-65% are comparable to surgical resection. The majority of recurrences are evident within the first 2 years following treatment. Complications of radiotherapy include lost of taste/saliva, tissue necrosis, and osteoradionecrosis of the mandible.

Improved quality-of-life data have been reported from selected patients treated with radiotherapy for carcinoma of the tongue base, although no prospective, randomized, or case-matched controlled studies are available in the literature. Advancing T stage is associated with decreased quality-of-life scores regardless of treatment modality. Of all head and neck subsites, treatment of base of tongue cancer has the greatest impact on speech and swallowing function and on quality of life. The addition of neck dissection to primary radiotherapy for tongue base cancer has no impact on posttreatment quality of life.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Thank you so much for all this information. The more I read from trustworthy sources, the better I feel. Increasing knowledge feels like I have better control, although I know in my heart that only God is in control.

I'm so thankful for this message site.

Melanie, you are wise to want to know all that you can about ORAL CANCER. When I was diagnosed in 1989 I went to the libary. There was no place like this back then. I knew of NO ONE that has ORAL CANCER. Even at the CANCER CLINIC where I went, people were amazed that I was the girl in the office with it. I felt like a social outcast. Like I had leperacy ( I think that is how it is spelled). NO ONE in the office waiting room wanted to talk to me, to sit near me, breathe the same air as I did. It was awful to be made to feel this way in the very CLINIC that is for CANCER patients. If this was any indication of how the rest of the world was going to treat me, WOWm this was going to be HELL on earth for me. In a nutshell I have had all the radiation I can ever have. I only have a piece of my tongue left. I mean a very small nub left of what once was my tongue. I did have cancer on the floor of my mouth. It was on the tongue and the floor. Then it moved to my jaw. This is where the damaged was the worst. TO read all about me ------go to the very top of this page and see where it saysreturn to the main web site(leave the online support group..click that and there are all the stories..This should answer all or at least some of your questions, if it doesn't ask away,I will give it to you straight from the hip which means Honest--the truth..which when it comes to someones life to me it is the only way to be.honest....Thanks,,,,Vicki Lynn

Vicki Lynn,

Go to the GENERAL CHAT forum and look under the subject that Fridge initiated called "Queries and Thoughts". I posted a note for you there.

Thanks for everything.

Melanie

Hello Melanie

Haven't heard from you recently. I hope you and yours are keeping well.

Best wishes
Vinod

Melanie,
I am so glad you are fighting back in this fasion, because I totally believe that information is power. My wife was diagnosed two years ago with adenocarsinoma of the base of the tongue, T4 n2 M0. First and foremost I believe it was God who has healed my wife, and these are the tools that he used. Emory in Atlanta, where all the doctors treated my wife with love and respect, these doctors used 33 treatments of IMRT radiation once a day for 10 minutes at a time for six and a half weeks. They also scheduled her for three treatments of cisplaten chemo, one at the beginning, one in the middle, and one was scheduled at the end of the 33 treatments but she was so weak it was not possible. She completed her treatmets June 23, 2006 and as of today is cancer free. I thank my God and give him all glory because there were times I did not think she was going to make it. Dr. Davis, Dr. John Stone, Dr. Dong Chen, and Dr. Amie Chen did amazing work and I thank God for them being there. I just want you to know, I too worry about it coming back, I know I shoul not, but I know that God knows my nature and knows that my concerns are because I love my wife so much. I found a wonderful Dr. named Bruce Haughey, who pioneered tongue replacement techniques that are now commonly used around the world. I spoke to him twice during this time and he had assured me that if things would have gone bad he would have been able to help and that he was using new laser technology to treat base of tongue cancers, with good success. He is located out of St. Louis, and if you need his number please, please feel free to email me. God bless you and my prayers are with you and yours.
Jim

quote:

Posted 19 September 2007 04:10 PM
I was diagnosed with tongue cancer in January operated in March and Radiotherapy in May 07.

Can you tell me the percetage of re-occurance of tongue cancer please?

It is normal to have anxieties about recurrence. Recurrence Probabilities (Tongue Cancer) were discussed on a thread recently.

Studies have shown that between 10% to 30% of patients with oral cancer subsequently develop second primary tumours of the aerodigestive tract. The longer the patient goes without recurrence, the less likely it is that the cancer will come back. The first two years are the most risky.

One study showed that at two years, the recurrence rate was lower in patients that had combined chemo-radiotherapy treatment as opposed to radiation alone. But the treatment is very hard on the patient. No known medication or supplement has been proven to help prevent or avoid recurrence. However, maintaining a healthy diet and avoidance of such things as cigarettes can decrease the risk of recurrence. See: Spicy Foods and Cancer

You may find BEATING TONGUE CANCER, an interview with a patient and doctor about a recurrence, of interest.

You may also find the Cochrane Systematic Review on Oral Cancer informative and helpful.

Best wishes
Vinod

Hi

I was declared cancer free in 2004/05 and was and am still on top mof the world. The cancer has reoccured ( Cancer of the Larynx ) but this time with a vengence with not a chance of my waging a battle against it. Its best to accept defeat when one knows the ultimate result and spend the days that remain leading a life( how long I have is not possible to say as it is spreading fast) in which people will always remember you. The day I was diagnosed with cancer in 2000 April - I knew my life would never be the same again. I just accepted the fact as there was no manner I could get back into the past to change things.
Pondering over things, I used to wonder why I was kept alive under circumstances which were worse then death - no voice and have not eaten or had a drop of water orally for seven years - all through a peg tube ( Ananth's story). I think I now understand as to why I was kept alive though as a dead man alive. The reoccurance also is a blessing as I had time to settle all my dealings etc.I also took a conscious desicion not to ever get into a hospital ever three years ago and have more or less stuck to that. The family have accepted my desecion and have also explained it to my sons. My wife has decided to shut the whole thing out from her mind and I have been trying to make her understand.

Ananth's advice: Always be positive in all your thinking and go out and live life size as I have done (kingsize) and do not regret anything at all and trust me you will be one happy person and the healing will be faster.

Take care,
Ananth

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi, I am somewhat confused. I came to this site as a friend was diagnosed with tongue cancer and worried about recurrence. From what I have been reading it all sounds very gloomy. I am wondering why the stats seem to vary greatly from that of nasal septum SSC. I am 4 years cancer free from my nasal cancer. My oncologist has more or less said this cancer is gone and you will not be bothered by this in the future. Yet it seems to differ greatly from tongure cancer from what I am reading, ie most talk about recurrence over many years. I am wondering why it should be so different. Same cancer different location in the head and neck. My own cancer was T2 NoMO. And I plan on being on the planet for many more happy years. I live in the UK and was treated with surgery, rads and chemo at the best hospital, the Royal Marsden, the first cancer hospital in the world and my MDT were excellent. Maybe the doctor can comment on my points of confusion concerning tongue and nasal cancer recurrences. Many thanx