Posted By: Nikole025 New to this group - 11-06-2014 01:09 AM
Hello everyone. My name is Nikole and I am 37 yrs old and a mother of two beautiful girls. Almost a year ago, I was diagnosed with Stage 1 tongue cancer. I am not a smoker and do not have HPV so it came as a surprise when I got my diagnosis. I had a small spot on my tongue that everyone expected to be basic trauma to my tongue, but because I had a great uncle who passed away from late stage oral cancer many, many years ago...I was persistent to get it checked even thought I figured it was nothing. You know what they say...better safe than sorry. Well I am glad I followed through because it was caught pretty early. I ended up having a partial glossectomy and neck dissection to remove several lymph nodes but did not have radiation or chemo. A couple of weeks after my surgery, I started to get a large "sore" at the location of my surgery site. They did another surgery in order to biopsy the area because they were concerned the cancer had returned. Luckily it had not. Several weeks after that surgery, again a giant sore appeared on my tongue. By this point they figured it was granulation tissue but biopsied again...still clear. Well third time seems to be the charm and once again this granulation tissue grew back. Instead of yet another surgery, the Dr's decided that they would give me a shot of a steroid and I'm happy to report it worked! Until about a month and a half ago. I started to get yet another ulcer looking sore but not in the same area. I just started seeing a new Dr who ordered a PET scan. Just found out today that the scan does not show any cancer cells. As happy as I am about that, I am still in severe pain and the new Dr feels that this "spot" is again some type of trauma by a tooth in the back of my mouth. He told me to go see my dentist and have him file down this tooth. Luckily, my dentist took me in right away and immediately referred me to another surgeon because he believes this is a cyst and that there is no trauma caused by my tooth. I'm frustrated and not sure what to do at this point.
So I apologize for this long winded post, but I was curious if anyone out there had any issues with granulation tissue/ulcers caused at their surgery site?

I appreciate any input anyone might have and hope everyone the best.
Posted By: ChristineB Re: New to this group - 11-06-2014 01:38 AM
Welcome to OCF! Its always nice to have survivors join our group.

You are young to have been thru an OC diagnosis. You are very fortunate to have caught it so early! Most of us have been thru radiation in addition to having surgery which makes a big difference in healing. Is sorry but I cant remember anyone with a similar situation as yours on the forum. Its pretty unusual for granulation to keep returning.

My suggestion if possible, would be to get checked out at a comprehensive cancer center (CCC). Its where the doctors specialize in a team based approach with them all on the same page with a treatment plan. CCCs usually have the latest state of the art facilities and their doctors are more experienced. Thats not to say you cant find great medical care other locations. If a CCC is anywhere near your location it would be a good idea to get them to check you out. Let me know if you need the list of CCCs.

Best wishes!
Posted By: Cheryld Re: New to this group - 11-06-2014 04:20 PM
HI there... my story is similar to yours I had chronic irritation to my tongue and after many years I ended up with a cancer dx. Definitely keep an eye on it. It's a pain to run back and forth etc, and thankfully your dr acted quickly initially. I would also look into external irritants? Maybe food related issues? hugs.
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