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Leukoplakia on the Vocal Cords

Dvanstraten
Posts: 1
Joined: Mar 2013

I have a friend who was diagnosed with leukoplakia on the vocal cords, where they come together.  He saw one ENT who said it was cancer and sent to another ENT.  The next one was like a Mc Donald's drive through and scheduled surgery without any diagnostic work up leaving him with no confidence in her plan of care.  The present doctor is perscribing Nexium and believes it is not cancer but no biopsy done.  That ENT will see him again in three months.  He hasn't smoked in thirty years.  His voice however, is seriously effected.  The ENT does not seem to be concerned about that.  Does anyone have experience with having the leukoplakia removed from the vocal cords.  What were the outcomes?  We are not getting the answers from the physicians and so it is very frustrating.  We have not been able to understand the risk associated with Leukoplakia removal.  Any help? 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

My story is kind of long but I will try to make it as short as possible. It started about 7 years ago with a raspy raspy voice. My MD put me on nexium for 3-6 months thinking it was reflux. No changes so he sent me to ENT and we tried prilosec for another 6months. No change still. He could see my cords and thought it looked like leukoplakia but wanted to make sure thats all it was so he sent me to USC Head and Neck for a videiostroboscopy because it is much better than the nasal scope they use in the regular ENT offices. The surgeon at USC said he too thought it wasmleukoplakia but wanted to make sure with a biopsy. So a few days later we went in and did the biopsy. It came back as carcinoma in-situ which is a Pre cancerous condition. The best form of treatment for that is removal and to watch it very closely. Some Dr's will recommend radiation treatment for that as well but some patients never have any more regrowth of the carcinoma in-situ so radiation is very aggressive for what may not be needed. Over the next 5 years I would have a total of 11 removals of tissue that kept coming back as CA in-situ. I would go to USC every single month for the video strobe and every year for a CT scan because this can turn to SCC (cancer) very easily. After each surgery my voice would suffer again so I was going to speech therapy all during that time. At one point it had been about 7 months since my last CT and my voice suddenly got worse. My ENT/surgeon at USC moved up my CT and we found a tumor. It had gone from CA in-situ to full blown cancer. So I had surgery, radiation and chemo. I am now almost a year from that initial finding of the tumor and so far NED(no evidence of disease) shows up on my PET/CT scans. I go for my next scans next month.
I think it's wise that your friend have a biopsy. I'm not sure what area you live in but if you feel comfortable telling us maybe somebody can refer you to a doctor or facility that they had had good experiences with.
Leukoplakia in itself is not dangerous. It's more like a fancy word for scar/calloused tissue. Think of it like the callous we get from holding a pen or pencil or if we were to constantly rub our forefinger together with our thumb, it would eventually create a callous. however, it can look like leukoplakia and be something different. They one and only way to know for sure is to biopsy it. By the way, I've never smoked and I very rarely drink. I mean almost never drink.
Good luck, but please have it biopsied, if for nothing else than piece of mind that it's nothing to worry about.
Billie

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

Leukoplakia literally means "white patch".  It is a descriptive, rather than a diagnostic term.  It can be caused by simple irritation, or it can be premalignant or frankly malignant.  It is true that GERD can cause leukoplakia, which is likely why the nexium was prescribed.  BUT, biopsy to rule out the big bad stuff is a good thought.

 

Pat

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

How your friend is doing? If you have any more questions please feel free to ask us, this site is a great source of support and information.
Billie

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