I was recently diagnosed with "INVASIVE MODERATELY DIFFERENTIATED SQUAMOUS CELL CARCINOMA. -LESION PRESENT AT THE DEEP MARGIN OF THE SPECIMEN". The location is "LEFT VENTRAL TONGUE". Pet and CT were negative for node involvement or metastasis, so T2N0M0. My ENT Dr is recommending surgery and then depending on the pathology, Selective Neck Dissection, Radiation, and or both, or none (wait and see). He told me I would only need to stay at the hospital for one night. He said he would place a synthetic skin graft on my tongue and a pack which would have to stay on for 5 days, to help the skin graft take. He said I would just have to drink fluid nourishment until then. This is contrasting with other peoples experiences I have been reading on this forum today. Therefore I am a little confused, as I have read many other peoples experiences and they seem much worse. Am I missing something? Thanks in advance, and I really appreciate all the information many have shared on this site.

Thanks Matt

Hi All
I spent several more hours reading the forums today. Wow, there is so much great information and so many people that really go out of their way to share and advise. It's truly awesome. After what I learned today, I think I can refine my question.Is the reason my ENT surgeon never mentioned reconstruction to me because he's not doing a glossectomy, just a tumor removal? Or is even a small removal of tissue considered a glossectomy and maybe partial ones don't require reconstruction? That's my confusion I guess. Also after reading these forums, I decided to definitely to get a second opinion at a CCC. Luckily for me, Moffitt is not far from where I live. Just really want to say thanks to all who have shared their experiences and offered help and encouragement to others. This a really really scary thing and this forum is a great resource.

Matt

Welcome to OCF, Matt! Im sorry I missed your post from last night. Definitely NOT the way I like to welcome new members. Im happy to read you have spent considerable time reading and learning about OC (oral cancer). You can easily see you have found an excellent resource to help get you thru whatever path you will take to eliminate your cancer. You're correct... this IS scary!!! Most people feel more afraid as its something new, uncharted territory that they know very little about. Dont worry, we will help get you thru this.

From what I understand about glossectomies, any time part of the tongue is removed its called a glossectomy. If you have only a small area removed you may not need a graph. Much of this is up in the air until the doctor actually gets in there and can see how invasive the tumor is. Even with todays technology, an experienced surgeon still depends on what he runs into once he starts the surgery. The smaller the area the doc takes, the easier it is to bounce back. Of course the doctor will pay close attention to get wide margins around the tumor. A second opinion is an excellent idea!!! Just remember surgeons cut and will recommend surgery. But once they cut and its gone there is no putting it back to 100% functionality.

know many OC survivors who are leading great lives after undergoing partial glossectomies with a free flap (graph usually taken from the wrist area to rebuild the tongue). I even know several who have had total glossectomies and live decent full lives. One of OCFs best examples of a patient who had life altering surgery yet she was able to thrive after her recovery. Look from posts by Misskate, Im sure you will find her posts very helpful and encouraging.

Heres the link to our main OCF site. You can also find it by clicking on the words OCF website at the bottom left of any page. On the OCF main site there is page after page of anything and everything to do with OC, treatments, etc. Im certain you will find out alot more info by reading thru that.

Main OCF Site... Understanding section

While you are getting your treatment plan and facility all set up, you should start eating all your favorite foods, desserts too. You do NOT want to go into this with cravings. You could encounter a few weeks where you struggle to eat so dig in and enjoy If you would need further treatment of radiation, that will negatively impact your ability to eat. Its only temporary but it can feel like its forever when you are drinking your meals instead of having a steak sizzling right off the grill.

You also will want to visit your dentist for a thorough cleaning and to make sure all your teeth are in good shape going into this. No matter what your treatment plan is you will need this taken care of before you do any treatments.

Hope I havent overwhelmed you with too much info. Hang in there, we're in your corner and will help you as much as we can. Best wishes with everything!!!

Welcome Matt!

Christine said most everything I can say at this time, only better! I would also advocate a 2nd opinion at a top CCC, like Moffitt, which have better outcome than those with lesser volume, and not specializing with this type cancer, and is a member hospital of the NCI and NCCN, and ranked 6th cancer center in the country by U.S. News Reports Best Hospitals. My cousin goes there for colon cancer, after dealing with treatment locally, I told him to go there, and is glad he did.

Good luck

I would go see Lou Harrison at Moffitt.
He is one of the best in the would.
I was a patient of his practice when he was at Beth Israel in NY.
All the best-Rob

I just had the same procedure done. Mine was in that front part of the underside of my tongue. They took a skin graft from my upper thigh. The ENT did what’s called a bolster dressing which basically sews that side of your your tongue to your teeth to hold everything in place for the first few days. As bad as that sounds, it wasn’t really that bad. To be honest, I was expecting worse. When they remove my lymph nodes, 14 of them, they found that one was invaded. Because of that I am now scheduled for radiation treatment that starts in a couple of weeks. The area which they took the lymph nodes out is still quite swollen. Especially in the mornings. They took out the lymph nodes as a precautionary because the tumour on my tongue have reached a certain size. Apparently once it reaches 6 mm thick it has a 20 to 30% chance of spreading to the lymph nodes, and mine was and did. I’m getting radiation as a precautionary now so in hindsight The fact that they removed the lymph nodes and found something makes me more sure that I’m doing the right thing with the radiation. Good luck with your procedure. I’m sure it will go well.

Hi All,
Thanks for sharing. I got my second opinion at Moffitt. She basically said the same thing as my original ENT Dr. Only problem is if I wanted her to do it I would have to wait about 5 weeks or so. So I am going to go with my first Dr. Hopefully, I will get the surgery a week from Tuesday. Will keep you posted and thanks again.

Matt

Matt,

Hope everything will go smoothly for you!

Hi All,

So posted for so long. I had a stroke before I went to surgery, luckily me. I any perfect body movement, Speech aphasia, as I not talk (I struggle a complete sentence). As result of a stroke as Moffit surgery risky, radiation route instead. I get beginning 7 weeks treatment. If last 2 couple weeks, (if you needle is tumors, doing a twice a radiation).Is gone you anyone that?

Matt

Hi,

Sorry for my previous post. I had a stroke, I now have Broca's Aphasia. I have to think hard about what I write. I currently about begin my fifth-week of radiation treatment. After that, I begin Brachytherapy. Which will allow them to do two treatments a day. Does anyone have a experience with this? Your input be would greatly be appreciated.

Thanks Matt

I'm not familiar with that, but I'm sure someone here has been through that ... seems like we have someone here who's been through everything! I am very sorry about your stroke. Have you got a support person or caregiver to help you through treatment and communication?

((hugs))

Hi KristenS,

Thank for your quick response. I just recently searched for "brachytherapy" on this site, You for right a lot a people brachytherapy on this site. They basically stick a "straw" (for lack of a better word) thread threw in your tongue. They thread the straw through chin then is wind up the tongue, they may be use multiple straws, These straws a hollow and it allows them pin point radiation treatment so they delivered a can much very high dose a and it effects small areas. They typically use 3 - 5 treatments twice a day, They said I had a higher survival rate. It sounds to me it really hurts like hell, lol. I guess I will insist on those fentanyl patches, the strong will ones. Oxy 5m is finally losing it's effect on me. Thank you so Kristen I will be updated the results.

Thanks, Matt

Wow, that does sound ... interesting. Definitely go for the painkiller, at least so you'll have it on hand if you want it! The better they can target it, the better the results, I would imagine, and the fewer weird side effects later? That's a thought to hold on to during treatment, anyway.

Lots of hugs! I just hit my 5-year mark from my first diagnosis ... it's been a wild ride, but we've gotten through it, and we keep on keeping on.

Hi All,

I finished 5 weeks of radiation treatments oral radiation. I am due to start to Brachytherapy 6/27. An unpleasant 7 days it will be. After that I will be cancer free, well that's the plan. To quote Burns "The best-laid plans of mice and men often go awry" hope Burns was wrong about this plan, lol.

Matt