NEW LEUKOPLAKIA FORMED ABOUT A CENTIMETER BELOW PARTIAL GLOSSECTOMY SCAR WHERE THERE WAS A MICRO-INVASIVE OSCC

Well, I guess I'll post this here as a repost as a new thread with a separate question.

So I saw my ENT Oncology surgeon several weeks ago for a August follow up from my February VERY partial glossectomy. Was like my 3rd post surgery follow up check up.

Everything healed up very well. Zero pain or problems like a month or two after the surgery.

For the most part that continues to be the case now.

I get an occassional cramping like pain, very minor, in the area that's only really been a thing in the last month or a little more, with a slight increase in frequency.

I discussed that with the surgeon, and he explained the tongue had been through quite a lot, and scar tissue forms and changes and things get pulled tight etc.

To me it seemed a bit odd that this long after the surgery I am getting the cramping sensations.

Unlike the little pimple that turned out to be cancer, there is no currently persistent sore spot.

I have noticed, and discussed with surgeon a new leukoplakia, about 1 cm below the scar from the surgery.

It seemed to be too far from the main scar to be a suture scar, and he agreed that it is not likely to be that. It did not feel firm to him, in fact he could not feel any texture to this lesion at all. Which neither did my first moderately dysplastic lesion. The cancer pimple did protrude a bit.

I can see tiny white dots around the main scar that I think are likely where the sutures have been absorbed and tiny little areas of scar tissue, that would be similar in size to the sutures.

The new leukoplakia is about the same sub-centimeter or maybe pushing a centimeter as the first lesion way back. This one does seem to have some pitting or ulceration to it, especially when I manipulate the surrounding tissue. It's not sore or sensitive at this point.

The surgeon did say he could do an in office biopsy right there in the exam room when I come in for a bi-monthly check up, that I would not need my wife or anyone to come, as it would just be local anesthetic and a couple stitches.

I did not try to show him the dimpling effect it had when pressed, it kind of slipped my disorganized mind.

I think I know what Nels and some of you other active cancer veterans would say: "Just biopsy it".

I am leaning towards doing that next time, or at least more seriously discussing it with the Dr.

Obviously if it progresses, AT ALL, between now and October, I'll request he go ahead and remove it and sent it off to the the lab.

Unless he says if we start doing this, we'll be repeating the process every couple months as a new leukoplakia pops up.

So I guess my question is for folks who have had cancer and multiple leukoplakias, for NEW ones do you pretty much ALWAYS get them biopsied after the 2-3 week period of "if it doesn't heal; BIOPSY IT!"?

The original lesion was biopsied ONCE, and so long as no changes, I just saw an oral surgeon once a year.

It changed, got the little pimple like eruption that was SORE when manipulated, and stayed sore days after, so that change triggered the biopsy that found the cancer.

I guess that would be a prudent approach, every time a new one pops up, confirm it is not cancer, then just watch it (like a hawk).

Thanks in advance for any words of wisdom.

I'll go spelunking in the past forums and see if I can find anyone else experiencing new post surgery leukoplakias and how they dealt with them or what people said how they dealt with them.

Nels,

Thank you so much for your response. I appreciate your thoughts and that there is a light at the end of this tunnel.

MCR

Hello Chickenlady,

I am so sorry for what you and your husband are going through. Thank you for reaching out here. Recovery is different for everyone. Four years ago I was diagnosed with stage 4 SCC on my tongue and went through surgery (removed and rebuilt half my tongue, trache tube for breathing, feeding tube) followed by radiation.

I found recovery from surgery to be faster than that from radiation. I learned to judge my radiation recovery in weeks/months rather than days/weeks. Keeping a journal was quite helpful. If I got frustrated, i could go back and read how life was just a few weeks ago.

Coupling this cancer coaster (felt like a roller coaster of emotions to me) with heart problems - ugh - hard! I kept a spreadsheet of all my key recovery activities - from food, to medicine, to exercises, to caloric intake, yoga, mindfulness, walks, time with loved ones (make myself call or email a friend or family), that love went a long way, time with God, etc. If i hit 90%+ for the day, i would treat myself to a favorite snack or something.

I will share that eventually I was able to speak to random people on the phone and be understood, eat at a restaurant, work again, jog again, surf again, etc. Each step was a small but important piece of my life back. One week, a half mile walk was my best, a couple months later i could jog a mile, etc. It will never be the same (have a lisp, scars, tight neck muscles, pain, etc) but I can also share that my life feels more meaningful today, I am more grateful, more present, etc.

Let us know particulars - hows drinking? eating? speech? social activity? medical team support?

Hello MCR,

I am so sorry to hear of your situation. Cancer is a real roller coaster of emotions. Thank you for reaching out and joining this forum.

I went through a similar surgery (stage 4, half my tongue removed and rebuilt, trache tube to breath, feeding tube, skin grafts, etc) followed by radiation treatment about four years ago. Recovery from surgery went faster than recovery from radiation. I had to learn to judge my radiation recovery in weeks/months rather than days.

One of the best tools for me was keeping a journal. Most of it was a written journal but I took a few videos of my speech too. When i got frustrated, I could go back and see real improvement.

As for learning to speak, drink, and eat again, be patient but persistent. Follow the exercises they give you. I can recall fighting hard to learn to swallow just a few small sips of water again. But, slowly, kept trying, etc and next thing, days/weeks later, it is a little easier. For me, I had to set up a training table (such as 2x/day swallowing exercises, 2x/day tongue exercises, yoga, meditation, faith study, walks, calories, etc). If I hit my targets, I would give myself a treat (favorite movie to watch, brag to my wife, etc.).

Four years out now and I can drink, eat, and speak. People will hear lisp in my speech but they can understand me. I can eat out at restaurants. I use a napkin to cover my mouth if i have to reach in there with a finger to clear something. Everyone recovers at a different rate depending on our surgery, damage from the tumor, treatment, etc.

Stay safe and keep the faith,
Nels

I was diagnosed in February with Stage 4 tongue cancer, downgraded to stage 3 after surgery. Over half of my tongue was removed. Skin taken from left forearm to reconstruct and skin graft from left leg. Had radiation for 6 weeks and ended May 3, 2024. Still have a feeding tube in place as I am unable to swallow enough to survive. A lot of pain in my arms and shoulder Completed PT and now on to OT for Lymphoma in my neck. Starting speech therapy this month. Does this end? Have you been successful in eating again and not needing a feeding tube? Feeling very alone and lost on this journey. Any suggestions would be greatly appreciated. Thank you.