Hi, This is my first post! I was diagnosed with Stage 1 SCC of the left lateral tongue about 6 weeks ago following surgery to remove a non-healing ulcer. The surgeon felt that it was unlikely to be cancerous but called me a couple of days later with the news. Pathology showed clear margins. Following this I had x-rays and a CT scan, which came back with an enlarged node. I was then sent for a PET scan, which was clear (thankfully). It appears now that I do not have to have a neck resection or radiation, but I am concerned because a white patch has reappeared on my tongue where the ulcer used to be. My next appointment with my Dr (ENT Specialist) is on the 17th May. Should I be concerned by this?? I am 49 years old and a lifelong non-smoker and very moderate drinker (once or twice a month only). I felt extreme relief following the PET scan but am again feeling uneasy.

Welcome Sue.
I would call the Dr. and explain the new white patch if he has never seen it. Do not wait the two weeks. Call and explain your concern. He may ask to see you sooner. If not, you will be able to relax a little. Good Luck! Petey

Thanks Petey, I feel like a hypochondriac at the moment and keep looking at my tongue for changes - I need to chat to the Dr about what I should be looking for in between appointments and what sort of things I need to call him about. I was thinking that maybe the patch was part of the healing process, but it's bright white (but small) and different to the other areas of my tongue where I had the operation. I will ring on Monday. Thanks for the reply

Hi Sue,

As you will see from my signature, I had the exact diagnosis as you, even down to the left lateral border of the tongue. Mine was a non-healing ulcer that was biopsied, too. I also was a non-smoker and very limited drinker.

What you are seeing could very well be scar tissue, however it should certainly be looked at by your ENT to be sure.

If you spend enough time on this forum, you will see that there are many treatment plans for the same type and location of oral cancer and this really depends upon the treating doctor's protocol. In my case, I was treated a comprehensive cancer center (CCC) and had a consultation with a radiation oncologist before my surgery. It was decided that I would not have radiation if I did not have nodal involvement and if the surgery had clear margins. (Frozen sections were done during the surgery to assure the clear margins). My treatment plan involved surgical removal of a 2 cm circular area of the tongue around the original site of the cancer.

The decision was made to do a modified neck disection to rule out nodal involvement. I had an MRI (not ordered by the surgeon, but ordered by the oral surgeon that did the biopsy), but did not have a PET scan. The surgery showed clear margins and no nodes. As you can see, my treatment was more aggressive than yours, but certainly less aggresive than others here have had for similar situations.

I want you to know that I personally am not recommending any treatment plan to you, but just making you aware of the fact that different protocols exist.

You do need to see your surgeon as soon as possible to find out what is going on and to put your mind at ease or to get some follow-up treatment.

By the way I spent about 2 weeks this past February in your lovely country and had a wonderful time. Where in Australia do you live?

Jerry

Hi Jerry,

I live in Melbourne, right down south and close to the beach. (Not that it is beach weather at the moment as it is mid Autumn.)

So far the only person that I have seen is my ENT surgeon, but I was booked into a Cancer Clinic (where I was to see an Oncologist and Radiologist together with my Surgeon) prior to having the PET scan. When that result came back all clear, the surgeon rang me and advised that there was now no real need to meet with the Radiologist and Oncologist as he would be recommending close monitoring, without further treatment.

I will be having 6 weekly appointments with the ENT from now on. I have lots of questions for him already. One concern I have is in relation to node removal. Literature that I have read appears to indicate that the long term prognosis is slightly better for those that have had a modified neck dissection compared to those for whom the 'wait and see' approach is taken. My surgeon is of the view that this should only be done if there is an indication of nodal involvement.

It is great to hear from someone with a similar diagnosis and history.

Regards


Sue G

Hi Sue,

Melbourne is a great city and unfortunately we only spent one day there before leaving for the outback. I wish we had spent another day or two there, but the itinerary didn't plan for that. Maybe someday, we will go back.

I can understand your concern about the neck disection. Again, I am not recommending anything, but just want you to have another point of view on the matter. The way it was explained to me is that my surgeon feels that in his opinion the only way for him to know if the nodes are involved, is to remove them and biopsy them. Although my MRI was clear (again he doesn't order them) he routinely will do the disection. Now, one might say "he's a surgeon, that's his job," but, I found it difficult to disagree with his reasoning. There are members here that had similar situations to ours, that had radiation and or chemo. Approaches to treatment depend on the surgeon's training and experiences and I have noticed, also are different, in different parts of the world.

If there is anything else I can help with, please don't hesitate to ask or send me an email, if you want.

Please keep us posted as to what you find out. I, of course, hope that this turns out to be nothing of concern.

Jerry

Sue


I as well had the excat same Diag as you ..and same treatment as Jerry as you will see below my name.. ANd I would highly doubt that any of us here would consider you a hyochondriac, I know myself I am still always looking , so my best advice as I am not medical ..Call your dr . MY understanding is any sore that dosent heal after 10-14 days should be checked . SO I hope that helps .


Shar

Sue -
Don't ever worry about being a hypochondriac. It's good that you notice changes so that you can ask your doctor about them. It may just turn out to be nothing or part of the healing process but it's better to be sure. My son had a sore on the side of his tongue and kept putting off going to the dentist about it so that when he finally did, it became a stage two SCC. Your health is very important and the doctor gets paid to answer questions. Let us know what happens.

My cancer was found when I had a tooth removed, one that was bothering me and had become obviously unsavable. The area didn't heal and eventually I had a biopsy of that area on my gums. Days after the biopsy, the area of the biopsy had a very bright white patch that returned. Unknown to me it was the cancer that I would be diagnosed with a few days later.
NOW, this is NOT TO SCARE YOU BECAUSE I SUSPECT THIS IS SCAR TISSUE. I just want you to know that things like this CAN be problems and you cannot afford to wait until the 17th to have it checked. Call and I bet the doc will have you come in tomorrow.
Take care,
Minnie

sue
i too have the squamous cell carcinoma.it's been 3 yrs.any kind of change in my mouth i'm on the phone to my doctor,my doctor told me any thing different in my mouth call him right away.i'm still scared all the time.it's very hard even after 3 yrs.good luck to you and my prayers are with you as they are with everyone in this forum.
lynn