Hello, new to this site, I have been reading posts on this site for over a year, but since I had stage 1 tongue cancer, no lymph nodes involved and no post surgery treatment did not register. I had lesion removed by oral surgeon w/o clear margins, then had partial glossectomy w/neck disection, that was Nov. 2011, the side of my tongue where surgery was done is now very white and I'm thinking scar tissue, Feb. went to ENT who did surgery he thinks same, but I'm concerned. I see from the other posts most of you have had radiation but I was hoping someone could maybe tell me if they had same experience? I have set up an appt. with the Oral Surgeon who took lesion off orginally for a second opinion.

Welcome to OCF! Glad you have officially joined and started to post. You are an OC survivor so you are in the best place to get info and support.

If you are concerned how about going to a completely different doctor for your second opinion? I would suggest a cancer center or even an ENT who specializes in OC. It could just be scar tissue that is there. But just in case, (knowing you have already had OC before) this is the same location as your original spot I would push for a biopsy. The worst that can happen is it comes back negative but at least your mind will be at ease. Ive had many biopsies done over the years since my 3rd round of OC, luckily all were negative. Im always very cautious about this so I request a biopsy with every little bump so I know for certain what it is. Gosh, for all of us its our worst nightmare, to have a recurrence.

Best wishes!

Thanks for the quick response Christine, the ENT did say he would monitor and maybe do biospy when I go back for check up in June. To be honest the reason I am going to the Oral Surgeon is because I just love him!! The ENT on the other hand not so much. I am just alittle concerned that he has never suggested a PET or CT scan, but on the other hand I never pushed for them either. I just wanted to put it all behind me.

Anyway, I have already decided when I see Oral Surgeon that I would like referral to different ENT. The ENT did a good job with my surgery, cannot even see the scar on my neck! But he can be alittle arrogant and seems offended when I ask questions about issues that I have with swelling from lymph nodes removed and less saliva, told me I was lucky I didn't have radiation it would be much worse!

I will post again after my appointment Tuesday.

Sounds to me like you were not treated at a cancer center. I really suggest checking into one for a second opinion.

About doctors, we all want to be comfortable and like our physicians. But, some of the very best doctors have lousy bedside manners. I would much rather have a doctor who wasnt quite so nice and they were top notch than to have one I really liked but they werent on the ball. Alot of surgeons are arrogant but remember he works for YOU. Dont let him dissuade you from asking questions. If it were me I would keep right on asking them maybe even repeat a few if the doc wasnt being clear. Thats just my 2 cents.

What kind of follow up care do you have? Most patients get scoped and have either a CT or PET to ensure they are doing ok. Sounds like its not a bad idea to get yourself another ENT. Hopefully at a cancer center where they will have a team based approach and everyone is all on the same page.

I hope this turns out to be nothing serious and that its just scar tissue acting up.

Best wishes!!!

Sherrie,

I had the same cancer as you. I have a CT scan yearly from my waist up. I would ask for a CT scan.

Keep us posted. Take Care

Connie

Hi Christine, I was not treated at a Cancer treatment center, but did meet with a Oncologist after my surgery to discuss options. He suggested no rads/chemo based on clear margins after second surgery. Now I go to ENT every 6 mths, but have never made it 6 mths between appts. If something concerns me I make appt. He does scope every visit. I am going to ask to be referred to CTC for my future care and will ask for CT, Thanks Christine.

Hi Connie,

Glad to hear you have been all clear! Couple questions regarding tongue. Sometimes mine feels swollen and other days feels pretty good. Twice since my surgery, once about 6 mths after, I ate salt and vinegar chips and my tongue blistered and was sore for a couple of days, don't eat them anymore. Then 2 wks ago had some spicy shrimp cocktail and my tongue did not blister but was swollen for a day after. Have you expierenced this?

Sherrie,

I have the same experience. When I eat ice cream or chocolate my tongue is swollen for the day. Same for spicy but I'm not giving it up. I can handle it once a week.

Six months out I had a CT Scan now every year. To put your mind at ease ask for a CT Scan.

Take care,
Connie

Here is my two cents for what it is worth! I am very new to cancer.

I had same diagnosis SCC of L. tongue. I only had partial gloss (no neck). And now I have to get checked EVERY MONTH. Once every 6 months seems too far apart for appointments! The docs told me that I would have to get check every month for 2-3 years. I have no risk factors (no smoke, alcohol, chew, good oral hygiene, HPV-). Additionally, I am not being seen by a Cancer Center, but am moving all my care to Moffit in the near future.

Lori,

Moffitt is a great Cancer Center and very easy to get to off 75.

They have a website I have Dr. Thomas McCaffrey, of course, I think he's one of the best.

Keep us posted.

Take care,
Connie