Hi! I'm new to this site, but my cancer has been part of my life since September of 2005. Though I've done a lot of research, I have never found anyone who is dealing with a chronic recurring oral cancer. I'm in Cincinnati.

It began with squamous cell carcinoma in situ on the left lateral side of my tongue. This was removed surgically. It appeared again in a slightly different spot and was surgcially removed. I had a spot on the left back top part of my tongue that was invasive carcinoma. I had a partial neck dissection and 4 lymph nodes removed. All were clean. I've had granulomas and sqaumous cell carcinomas from in situ to invasive removed over 20 times now. A year or two ago the cancer started to be in the gutter between my tongue and teeth. Recently, the cancer has been on my gums too. My last surgery I need to have part of the tongue excised, 4 teeth pulled and the inner part of the jaw bone shaved in case the cancer had spread to the bone. (It had not, praise God.)

I have been treated by 2 ENTs, a holistic head and neck surgeon and nutritional specialist, and have had consultations with 2 other ENTs, a periodontist who specializes in cancer, an oral dermatologist, a radiation encologist and the head of radiation oncology at Massachusetts General. I have been by these experts that radiation is not indicated at this time and would be difficult to administer because my cancer is a moving target. (One doctor referred to my condition as "condemned mucosa," meaning that the tissue on the left side of my tongue and mouth are always deteriorating toward cancer.)

People ask how often I see my surgeon for follow up, but I've only made it to the 3 month period twice before I've had to see him again for more pain or weirdness in my mouth. Almost always there is cancer present in the tissue removed, though never very advanced.

I am a married mother of 2 girls, ages 10 and 11. I am a children's librarian and tell stories for a living. I'm grateful that, despite the removal of a significant portion of the left side of my tongue and several teeth, I haven't yet had to deal with any real speech issues.

I will be seeing my doctor again on Friday, because I know the cancer is back on my tongue and possibly in the gutter again. Though I've tried to be as positive as possible, I have to admit I'm pretty demoralized by it being back again so quickly. There's not much tongue left to spare, nor teeth on the bottom. I would love to hear from those who have been through this or are going through this. I know you understand.

Thanks so much for listening.
Marie

Marie,

Welcome to OCF. There are quite a few members here who have had more than one recurrence and I am sure you will hear from them. I just wanted to say hello and let you know that you are not alone. Keep posting, and hang in there. You're going to get lots of support here.

Anita

WOW! You have sure been through a lot. I wish i could be of mroe help to you. I went through radiation and am soon to have my first post treatment scan. It is interesting that they chose not to go the radiation route with your 2nd or 3rd occurance. I pray that your next visit will be good news. Sounds like it is time for some.

Hi. You have been through so much. I hope the next surgery does not affect your speech. Your job as a children's librarian sounds great.

Your case resonates with me to some extent because I have been told that I've suffered a field change in my mouth which means the whole area is vulnerable to cancer. There was dysplasia near the edge of the last surgical excision. Last year, during my third surgery (but first recurrence) I had nearly half my oral tongue replaced by a free flap. My speech is about 85% normal but I've been putting off aggressively seeking teaching work. I think I will be ready soon. It's sounds strange but I was greatly reassured when I found that such reconstructive surgery is possible. The tongue can be replaced and the new tongue works amazingly well.

You sound strong and clever and wise but I can sooo understand why you feel demoralised now. I mean, we try so hard to be brave for our children but we need to nurture ourselves too before we pick up the pieces and move on again. I hope the doctor has an excellent plan of action for you on Friday. Good luck and tons of empathy.

I too can't believe radiation and perhaps concurrent chemo was not recommended in your case.

Were you a tobacco user?

Hi David,

I think the chemo is in reserve if the cancer becomes actually invasive. Though it is frequent, it is usually surface level, probably because I'm almost hypervigilant. I just am tired of it coming back so frequently.

I NEVER used tobacco, my HPV test came back negative, and I have always been an infrequent and low quantity social drinker. No one really knows why I've presented with this cancer. (When I was a little kid I used to eat SweeTarts until my tongue would almost bleed. My dad told me that they were bad for me. My first, irrational thought when I was told that the spot on my tongue was cancer was "Wow, Dad was right!")

Thanks for your response.

Thank you, Anita, for replying. I really appreciated positive words from people who've been there. I'll keep folks posted.

We have recently seen (within the past 2 years or so) more than a few people presenting themselves similar to you, i.e., non smoker, casual drinker, young relatively speaking, primary in the forward part of the tongue, HPV negative and an aggressive cancer.

Who is making the decision NOT to do radiation?

Both the radiologist I've seen here in Cincinnai, OH and the head of radiology at Massachusettes General hospital have said that radiology is not appropriate at this time. They gave a couple of reasons, the biggest of which is that the cancer has appeared in a variety of places on my tongue, in the gutter between the tongue and teeth and on the gums. Surgery gives clean margins, then it pops up somewhere else in the general vicinity.

Marie
Age 49, DX SCC 9/2/2005. Don't even know where to begin with all the abbreviations after that.

When I originally presented with scc on the tongue they did a partial glossectomy, then due to the depth of the tumor, a neck dissection, took out 72 lymph nodes, 1 positive...no chemo no rad's...within 8 months, the lump on my neck that I'd been pointing out to my surgeon started protruding so they could visualize it not just feel it...it was back! Now they decided to do the chemo and rads...they radiated both sides of my mouth and neck just to be sure and the chemo was to get any cells elsewhere in my body...my point is I was always uncomfortable in the beginning with no chemo/radiation and I was right...don't be afraid to ask the questions as to why they don't want to do it and don't be afraid to get a second opinion!