Hi everyone

Im 41 yo and was recently diagnosed w T1N0M0 SCC of the lateral (oral) tongue, HPV pos. Last week I had a partial hemiglosectomy and sentinel node biopsy. I just found out that my node was negative. And he got good margins on my tongue. So for now we are not doing further surgery (neck dissection). I'm only 6 days out from the surgery, but struggling a bit with my tongue wound. He covered it with a temp skin graft just as a protective dressing. That has since dissolved and I'm having issues w pain and bleeding. All considered nl by the surgeon, i guess I'm just wondering what others have experienced with the same surgery and when your tongue felt ok again. I also have a lisp, but think it will be temporary. This board has really helped me as a lurker, this is my first post. Any thoughts much appreciated :-)

Welcome, and sorry you had to join. I'm not as familiar with oral tongue as I am with oropharyngeal, which is my type cancer. You probably know more than I do, being a physician, but I wonder if an endoscopy was done with biopsy to the oropharynx being your cancer was HPV pos, and since 90 percent of HNC HPV is in the oropharynx, mainly the tonsil, and base of tongue, but can occur in the oral tongue. An analysis was done a few years back, checking medical reports, scans, recurrences and many showed were originally misdiagnosed as oral cancer or cancer was missed when the oropharynx was the primary.

I don't see many sentinel node biopsies, but may be the next best thing to do for HNC. Good luck, and hope someone here has some other advise.

Welcome to OCF! Glad you have found our forum to help you with your issues.

As soon as possible find a good speech pathologist. They can do wonders with helping you to regain your regular way of speaking. Most people are their own worst critics and think their speech is much worse than it is in reality.

It is rare as Paul mentioned to find HPV on the oral tongue.

Im not familiar with the procedure of placing a temporary graph on the tongue when removing a cancerous piece of it. I cant remember ever hearing anyone having this done before. Its always been either a graph is not necessary or the doc will take a free flap from the inside wrist area to use for the tongue.

Since you are a physician Im sure you are aware of the importance of having a second opinion. Im hoping you know also how important it is to be treated at one of the countrys top CCC's. Please let me know if you would like the list of CCC's.

Best wishes with your recovery!

Welcome,

I didn't have surgery on my tongue but I did have two tonsillectomies (palatine and lingual), two sets of biopsies (BOT and other areas) and two laryngoscopies looking for the primary site (they didn't find it). Between the chunks they took out of my tongue and the sores from treatment, I was a hurtin' pup. I still have some swelling as it takes a long time for those wounds to heal (I'm 6 weeks post treatment today) My speech was compromised a bit and while it has improved greatly, it's still slightly compromised.

I had the last surgery which included a selective neck dissection Feb. 7th so you can see how long it takes for wounds to heal in the mouth. Patience is going to be key in the healing process.

Positive thoughts and prayers

"T"

Thanks all! I'm am being treated at a CCC in San Diego. And yes HPV doesn't usually get the lateral tongue but it has been reported. Weird, I know. Yes he did do laryngoscopy during the case and didn't see anything. And had completely neg PET and MRI prior (even the primary wasn't seen). But multiple bxs (I just got my path back yesterday) are pos for SCC in the lesion so we are sure (this was my second opinion). The sentinel node technology is very interesting and I opted for it bc of the literature I read. Although imperfect for oral cancer, and not yet standard of care, there are great studies showing it has a high neg predictive value (95-100% depending on your T number and experience of your surgeon). I am certain it will eventually become standard for pts with a clinically neg neck (neg imaging and exam) to avoid SND for many. Like it is already for melanoma and breast. If you come across other new T 1-2 tongue pts, I'm happy to discuss w them what I've learned. Well see if it works for me long term. I'm thrilled to be cancer free but of course worried about recurrence already - lol. Thank u for all the input, my tongue is feeling better this morning :-)

Hi there... I had non HPV oral tongue cancer/tumor. It does hurt when healing. It will take a bit. I was blessed in that I had a graft of my tongue but it was permanent as they removed a sizable chunk. So I didn't really have the bleeding.

Since you're a bit unusual you really fit into both groups - ;o)
I would be careful with regards to your nodes because there can be a skip effect. Just keep a close eye on your neck and get to know how it feels. I say this because the standard as you know is removal of more than one node... usually 28 and up. I had forty with one node positive, and it didn't show up on a scan. I had had both an MRI and CT prior to surgery. And a former member of our group had 18 removed all negative only to have a node pop up months later and when they went in and removed another 22 nodes every single one tested positive. This cancer can be quite aggressive and hide in the nodes. And from my experience - though the sentinel node is usually the place it goes to first, it isn't always the case. A friend of mine is a surgical oncologist who does a lot of breast biopsies. Its standard practice to remove the sentinel node when dealing with a breast cancer. But he has found recently that it's not always 100 % correct since sentinels have tested negative only to have cancer in place in other nodes.

Try not to worry. It's just a heads up to be on the lookout for the unexpected.

I still remember my friend Liza (the one who had the negative 18 nodes followed by the positive 20 + ) she said to me... "I felt a node pop up a few months after my surgery (they had told her she was fine and they sent her home with no thought of radiation and chemo). Maybe I left it too long."

Hugs and an unfortunate welcome.

Thanks, Cheryl! It does make me nervous, in fact, my surgeon had a similar pt whose sentinel was neg and popped up w a pos node 6 months later. But it is rare, so I'm hopeful that w an HPV pos, small T1 lesion, neg scans, in combo w the neg sentinel, maybe I'm truly cancer-free! The sentinel node was actually a grouping of 3, and they were all neg. also my tongue path showed no peri neural or peri vascular invasion. Do I sound like I'm trying to convince myself? Lol. If I pop positive later, I'll clearly need SND and radiation, but was willing to take the chance and our Tumor Board agreed. I really debated, but am at peace w it now. And the skin allograft was essentially a biological dressing - just to assist w even healing. Wasn't big enough for true grafting. It's getting better each day; just really hard to eat and talk. But I'm just happy to have it out of me. Thank u for the advice. I will certainly keep everyone updated as to my progress. This board is so helpful. Who knew there were so many of us w this awful cancer!

My cancer was not seen on several laryngoscopes or palpable exams, only from a CT, Pet/CT scans, and from a biopsy sample from the triple scope, I can't spell pandenoscopy, which happens sometimes with bot, apparently tonsil too.

Hi Laurie,
I've just had the base of tongue tumour removed and a neck dissection and am writing to you from my hospital bed. Unfortunately I also had a bad bleed and ended up in critical care for 24hrs. It's been 8 days since the surgery and 6 since the bleed (which needed some further surgery) and it still hurts like heck - and that's being extremely polite. I think our surgeries must've been about the same time. I've been told this is quite normal. I can talk fine and eat/swallow but if I haven't recently had any medication the pain to eat is too great and I have to take more meds and wait for some more pain relief to take effect before I can continue eating.

Hope to be going home tomorrow providing I can get a good supply of pain meds.

I'll follow you and your progress and we can compare stories.

Meli you sound like you've been through the wringer... hopefully being at home will help you heal faster. ;o)
LB an informed decision is the best kind. The concern is always with people who prefer to let the dr. manage the situation. Not to say that they aren't good at what they do, but no one can advocate for you like you - or someone who loves you. As long as you are forewarned you know what to look for then that's great. Hopefully you are cancer free. If you can avoid radiation and everything else then kudos to you... best of luck in healing. I know eating can be painful with an open sore. it will heal sooner rather than later. until then bland, lukewarm, soft foods. hugs.