I've been lurking on this forum for years ever since I was first diagnosed with oral cancer five years ago. It started as dysplasia on the bottom right side of my tongue and went down hill from there..

I'm 58 years old so this started when I was 53. I have not smoked since my 20's but I did smoke a pack a day back then. I'm a occasional drinker and may go months without a drinking alcohol. I occasionally smoked a pipe or cigar back when I smoked by no other tobacco products.

So the treatments went like this:
1. Sore under tongue does not go away for six months. I would get them in the past and they would eventually go away. This one didn't.
2. Dentist refers me to an oral surgeon who performs a biopsy on the sore. Diagnosis: Displasia.
3. Oral Surgeon burns sore off with laser. Does not heal and a lesion forms around the site which he biopsy's again. Diagnosis: Cancer.
4. I go to an ENT Otolaryngologist who performs an operation to remove the site. Two weeks later, he goes back in to increase the margins. This time they are clean. So they tell me it's stage 1 (T1NXMX)
5. I get checked every month for a year then go to two months. I also change doctors. After about two years, a new sore appears. My doctor chooses to remove it. Into surgery I go again (third time). Diagnosis: Stage 1 cancer (first reassurance). Clean margins. A later PET show nothing has spread so still T1NXMX.
6. I now back to monthly exams. After a year, I still have white patches around the operation site. They do a biopsy and it's not cancer. Diagnosis: Leukoplakia
6. The site of the biopsy does not heal and get worse over time. Another biopsy is done. Diagnosis: Cancer.
7. Into surgery I go again. New doctor who is a bit more aggressive. He have the area removed tested before they end the operation to make sure the margins are good. Final Diagnosis: Stage 1 cancer third recurrence(T1NXMX).

So here I am. Two recurrences at the same site all state 1. Each time i loose more tongue. My last operation was three weeks ago and I'm healing well enough. However, the white patches are still over the operation site.

So what does this mean? Why three time? Each time it's stage 1 but I'm afraid that something else is going on. My mother, who is 85, has battled cancer in several different forms since her 40's. She's doing great. But she's never had a recurrence in the same spot.

Everyone I talk to looks at this as being very unusual. My teeth don't rum the sides of my tongue, more so now since a section was removed. We are avoiding radiation because of the side affects.

I just don't know what this all means and I'm tired of seeing doctors with puzzled looks on their face. I was hoping that someone here would know.

Thanks for your help.

Rich
Toano, VA

Rich, welcome to OCF! Sorry you have gone thru so many scares and surgeries! Ive had oral cancer 3 times, myself. The second time the tumor was almost the exact same spot as it was the first time I got sick. All it takes is one teeny tiny cell to be missed for the cancer to come back. Your questions are ones that may not have specific answers to them. Its pretty difficult to know the why's behind what goes wrong in our bodies to turn something non-cancerous into something that is cancer.

My suggestion would be to go to a large cancer center where an entire team of specialists will work together. The large cancer centers will have the most experience dealing with oral cancer and the pre-cancers too.

Since it keeps coming back, I am surprised you have not done radiation. That would help to kill any cells that could have been missed.

Hope you continue to be in good health and have no more recurrences.

Rich,

Wow brotha welcome to the fold my friend! I'm suddenly sheepish as I'm thinking you've read some of my posts while lurking over the years Glad you've finally decided to share my friend...if anyone can help we can!

When you say everyone says that the stage I 3 x recurrent tongue cancer is unusual, you're talking to people unfamiliar with this disease sadly. If that's your medical professionals I'd be concerned because they are not far sited enough to pick up on trends over years of practicing. That to me would indicate they don't see enough cases in a year and are not equipped to handle you my friend.

We see this very often on these boards, especially with early stage tongue cancer, it's particularly aggressive and very deadly. I'm not telling this to scare you, I'm sure you already are concerned enough...but your medical team isn't and that's dangerous for you.

Christine's advice is spot on, give your medical professionals the finger and get your happy ass to a Comprehensive Cancer Center (CCC) where they have more experience. The best advice anyone can give you...is get the absolute "BEST" medical advice available to you, it's "your life" we're talking about here.

Here is the list of CCC's http://oralcancerfoundation.org/resources/index.htm#centers

Get to the big boys, and if you're already at a CCC get to one ranked by US News Top Hospitals. health.usnews.com/best-hospitals/rankings/




Hang in there, use us for support.

What Christine and Eric say is absolutely true. Get to a Big Cancer Center, ASAP. I had been misdiagnosed for 3 months as having an infection when my tongue swelled to twice it's size, by the time I got a real diagnosis the tumor was Stage III. Had surgery 15 months ago, radiation 12 months ago and I am here to say I am doing pretty well and you will too. Just go to see the docs that are experts in tongue cancer. Hope there is a center near you, but if not, consider a temporary move to be near one. Wishing you the best !

Hi Rich,
Same thing happened to me. I had laryngitis and a sore throat for months and the Dr.s kept treating me for allergies. I finally yelled and screamed to see an ENT who diagnosed me with Stage IV OROPHARYNGEAL SQUAMOUS CELL CARCINOMA of the throat. Lots of chemo and radiation and am still having troubles after a year of being cancer free.
Hope you get to the right people who can help.
Robin

Hi there - well I'm with everyone else. Ditch your dr.s and get to a CCC asap. You are very very lucky it hasn't spread beyond your tongue. This cancer can be aggressive. I was a stage II... basically meaning the tumor was larger than 2cm (marginally) I had no spread. This was after years of messing around with the dr.s. and having a negative biopsy that came back irritated tissue, allergies, inflammation caused by a molar, etc... The final dx was cancer. I went to the TOP ENT/Otolaryngologist/surgical oncologist, and he didn't mess around, he removed a third of my tongue, rebuilt it with skin from my arm, took out 40 of my lymph nodes, and sent me for radiation and chemo, since the area never healed and by the time I got to surgery there was a node involved. They keep burning it or cutting it out but it sounds like they aren't getting it all. Different drs classify things differently, and chances are one dr looking at the tissue may see cancer some may see severe displasia - also when removing tissue for a biopsy the results are only as good as the tissue taken, so they may get scar tissue, etc, but not the area of active cancer. Best to go to someone who sees this all the time and will be proactive. Sadly if it gets beyond your tongue and into a bunch of lymph nodes then the chase is on. And while it sounds like it's well differentiated (slow growing) once it moves it can become aggressive. Please go to a CCC and get an opinion there. Usually, in the medical profession, a recurrence, within a year or two means they didn't get it all to begin with - which is why the area is not healing properly from the outset.

best of luck. and I know radiation is not something to look forward to its a bugger, but you are avoiding the one thing that could put a stop to the cancer. Admittedly the fall out is not fun by any standard, but it's worth it if it does it's job.

Thanks everyone for the comments. I did fail to mention that I did change Drs each time. My last one was one of the top ENT Otolaryngologist/surgical oncologist in this part of Virginia. I also went to the UVA medical Center for a consult after the first recurrence.

My current dr felt that the previous two ENTs were too conservative. That's why he took the approach of removing the lesion and having it tested on the spot to make sure he got it all. He wanted to wait until after this surgery to decide on radiation because of the side effects.

My concern now is that I'm three weeks out of surgery (and healing well) but I have a white area at the center of the surgery site. It appears to be leukoplakia or it could just be the healing process. I don't know.

I may be over reacting. I'm just tired of not knowing why this keeps coming back. As it stands right now I've lost about a quarter of my tongue. This last surgery he discussed the possibility of doing a skin graft but during the surgery he felt it wasn't needed.

I see my dr again in three weeks.

Rich,

Welcome to OCF! My history is similar to yours � 4 surgeries since 2005. Two were for SCC, one a follow-up to get better margins and dysplasia, and the last one for dysplasia. I did have RT about 8 months after first surgery (long story). All in exactly the same area � right lateral side of tongue. See my signature below for a brief summary of my OC adventures!

I�ve had various patches and ulcers (white, red, etc.) in my mouth since my first surgery and seem to be worse after each surgery, but have improved over time. But since I�ve had RT my healing time is a lot longer than �normal�.

My last 2 surgeries were at Johns Hopkins which has one of the best head and neck cancer centers in the country. During these surgeries my doctor did �frozen sections� during surgery and also used a �blue dye� (cannot recall the exact name of the dye but begins with a T) but it helps to identify abnormal areas when he then biopsied.

I have no known risk factors so my doctors (I�ve been to many different ones) are at a loss as to what is causing my cancer. There are a lot of us who fall into this unlucky group and for some reason seem to be more prone to recurrences. I still go for frequent follow-up appointments at my local ENT, my ENT at Johns Hopkins and my dentist, and will most likely continue to do so for many years.

Over the years I�ve had a number of PET Scans, CT Scans and MRIs plus a few fine needle biopsies to check some lymph nodes in my neck.

Radiation isn�t easy, but I would seriously consider it in your situation. I also agree that you should go to a top cancer center if you are not going to one currently. You need to be vigilante as this cancer does kill all too many people.

Good luck! Please keep us posted. Also, when you have time please add a signature listing your diagnosis and treatments.