My name is Tracy 46 single, no dependants....currently unemployed Adamant Non Smoker, social drinker,(previously was a nurse)

I have has a dx history of Moderate dysplasia (Lychen Planus) since July 2009 to the left lateral underbelly of my tongue. Monitored by the Oral Cancer Screening Clinic with the BC Cancer Agency in Vancouver Canada every 3 months and was told only 15% of all Lychen patients go on to develop Ca. (I suspected I would be in that 15%....gut instinct, poor healing after biopsies, increased pain following such etc)

I moved to Calgary Alberta last September and it took forever to find a GP but I went to a walk in clinic and asked for a referral to an oral surgeon as they don't have any kind of provincial screening program here (lame-o!!) and was refered to my ENT. He saw me for the first time 4 months ago but only took pictures and did not do a brushing or biopsy until this September and 3 weeks later got the news that it was Ca. Gee Thanks :P

I do not know what kind, or stage. Forgot to ask. Too nervous at the appt. I have since sent an email to the office with more questions and am waiting for a response. Going for a CT of the head today. I was told it was superficial and that the post op recovery would be similiar to that of a tonsilectomy. However he did mention something about a skin graft from my thigh if necessary (for closure of the wound? I dunno)

I thought the trend was to minimize invasive procedures with oral cancer these days and that radiation to shrink areas was a prefered method rather than disfiguring the oral mucousa and altering and interfering with speech/feeding and self esteem etc.

Any advice? What kind of questions should I ask??

I would want to know how much tongue they are planning to remove. It sounds like your tumor is near where mine was. I had a skin graft from my thigh. Not really to rebuild the tongue, but to keep it from healing to the floor of my mouth. This helped maintain mobility. Maybe that is what your surgeon is planning? I've had three surgeries on my tongue. The first two removed pretty small areas and did not really affect the use of my tongue or my speech once I'd healed. The last one took about 1/6 of my tongue. The tip is permanently numb and I have a bit of a lisp. How much tongue they take will depend on the size and depth of your tumor. If yours is small and superficial, the surgery will probably be pretty minor. Definitely talk to your surgeon and find out what his plan is. I would also want to know how much experience he has and what complications could occur.

Hi Tracy (first one), Sorry that you had to be here but we have really wonderful members who will guide you and help you recover.

You will probably undergo partial glossectomy for tongue and Neck dissection in case any Lymph nodes are affected (would know from CT scan). The current treatment procedures (including surgery) attempt the best to retain function and minimize damage to unaffected areas. You may undergo some reconstructive surgery, if required.

Oral cancer treatment is usually multimodality treatment and doctor may need you to go through surgery and/or radiotherapy and/or chemotherapy. There are lot of members here who have had all of them, my father included. For lateral tongue, from what I have seen, I think the recommended protocol is Surgery first and then followed by Chemo and/or radiotherapy depending on features of tumor and lymph nodes.

Once you have your CT and the report is available, Doctor will be able to plan the Surgery. So when you see them, ask about Clinical Stage and details about surgery. Even if you miss out anything related to recovery, therapies etc., we are there to help you.

I am sure by end of day today you will have sufficient information to arm you for your treatment.

Hey there - welcome - sorry you have to be here. Our stories sound very similar - lichen planus - (though they never gave it a name) - location - left lateral underside, age, I too used to be a nurse- And I'm Canadian (from Toronto) and non drinker, non smoker, vegetarian etc...

Most of what everyone here has told you is right - staging and the features of the tumor usually determine they type if surgery etc..- perineural involvement usually indicates the need for a neck dissection. Even if you have no nodes showing on a ct or MRI - cancer generally travels along the path of least resistance. I had no nodes highlight yet my dr removed 40 nodes and found one positive, I had a reconstruction. The plus with having a possible transplant from your thigh is it's only one donor area. My dr. However used the inside of my wrist. He felt my thigh, but because it's usually a thick area (unless you're super skinny) the wrist is the thinnest skin on the body so it fits better in the mouth. So he took from my wrist - not pretty but it worked. No rejection thankfully. In the states the hospital stay is shorter but I was in for 10 days post op (it's less time if there's no reconstruction) the standard here is 10-14.
If they do a neck dissection, and you have a node positive - then the will look for extra capular extension - if you have ECE they may recommend rads and chemo. I you hav any other questions please feel free to pm me... Good luck!

Hi Tracy!

Welcome to OCF. Everyone here is great so please don't hesitate to ask any questions that you may have.

Please keep us updated on your CT results once you get them so we can help you once you get some information.

Thanks Everyone!!

Nice to have someone to talk to about this as I am very much alone on this journey. I have told a couple of friends who were aware back in Vancouver, but nobody else. How does one talk about THAT?

So far what I have learned is its SCC and early stage. (not yet even stage 1 I gather?). Read it on my CT requisition. They have postponed my sx as they feel I am not prepared for sx as I am asking questions (bullshit, I am nurse I will ask all the questions I want!)

I am part of a clinical study that will use blue light to determine tumour margins during the sx. Which is related to the clinical study that I was was part of in Vancouver. Yes, thank god cause I had total confidence in that team, and the head of this team is a Dr. whos reputation is exceptional. (Sometimes being a nurse is a good thing). So I meet with the research team on Monday and then meet with the Head and Neck team (which is normal protocol) at the Tom Baker Cancer Centre on Oct 4 before surgery. They just had a opening this coming Wed and because my Ca is superficial thought to slot me in without seeing the team first.

At this time they are saying no radiation or chemo is required but that is before reviewing my CT and having the surgery. They say I will be in the hospital overnight only.

If I recall he said something about expecting removing 2-3cm diameter and as much as 5cm?? Does that sound right? I dunno my brain was all fuzz.

FYI how much does this surgery impede...intimacy. I am not married but still desire to date and find my first love. Would my tongue feel different to a partner?

Tracy 46
tracyinkits

Hi, Tracy

You wrote:

"I have told a couple of friends who were aware back in Vancouver, but nobody else. How does one talk about THAT?"

I started an e-mail update to friends and family once we had the diagnosis. I can PM a copy of it to you if you are interested - the first one is the hardest. You could also blog here and reference friends/family to this site.

Some people will be too shaken to reply. Others will offer help - please accept it! You have done much good as a nurse - let some of the good karma come back to you!

Hey - it sounds fairly superficial - I believe my surgery was done in a similar fashion to what you will have - my dr. Pioneered a surgery that gives a real time view of the cancer - he's the head of head and neck surgical oncology at princess margaret. 5 cm sounds about the same I had removed - but I guess the depth is the most important factor mine was 2.4x1.4 cm deep. I had a reconstruction. If you are I can't imagine them sending you home. With a reconstruction your tongue will eventually look pretty normal. With out it will be smaller I suppose. It should be fine see how it looks and if someone asks that you are seeing be honest. If they can accept and understand the truth they're not worth being with.
I hear what you're saying re friends - I still haven't told my aunt or best school friend! It's hard. But do email them or even Facebook it. They'll naturally ask questions. Take care!!! And Goidelic luck with he surgery!! Hugs!

Hey - it sounds fairly superficial - I believe my surgery was done in a similar fashion to what you will have - my dr. Pioneered a surgery that gives a real time view of the cancer - he's the head of head and neck surgical oncology at princess margaret. 5 cm sounds about the same I had removed - but I guess the depth is the most important factor mine was 2.4x1.4 cm deep. I had a reconstruction. If you are I can't imagine them sending you home. With a reconstruction your tongue will eventually look pretty normal. With out it will be smaller I suppose. It should be fine see how it looks and if someone asks that you are seeing be honest. If they can accept and understand the truth they're not worth being with.
I hear what you're saying re friends - I still haven't told my aunt or best school friend! It's hard. But do email them or even Facebook it. They'll naturally ask questions. Take care!!! And Good luck with the surgery!! Hugs!

Met with the clincal research team today. And met Dr. Dort, cool guy and he has a sense of humour. They showed me pictures of my tumour taken with the blue light and its 22mm x 12mm and only 1mm deep, so my recovery time will be short Only one night in the hospital. Says I may not even need the skin graft but that will be my surgeons decision.

OR date moved to Oct 03 and so I wont be meeting with the Head and Neck team prior to surgery as my surgeon called me at home this morning and answered my questions

Feeling more optimistic now. Then I can get back to finding a job and keeping my apartment.

Thats terrfic!!! Good luck with everything

Yup, excellend news! As Cheryl had mentioned earlier, superficial tumor caught early.

Thanks Cheryl and Everyone

Surgery is done and recouping at home. I had a CO2 Laser glossectomy of the left ventral side of my tongue. No graft needed. The area that was lasered was pretty much more than just the left ventral side it included the front of my tongue and base/ bottom of my mouth too. I have copious amounts of saliva, severely restricted ROM to my tongue cannot talk well. My entire tongue except for the very very right lateral side is completely numb. Lots of pins and needle feelings though (regenerating nerves I gather) Nobody can understand me when I talk. I am drooling and am developing what looks like candida on my tongue.

Has anyone else out there had CO2 Laser glossectomy?

I stopped taking the T3 and they were contributing to my lightheadness and shakes. I don't consume caffeine at all. I haven't been eating much, no appetite, mild nausea. Sleeping is almost non existant, lying awake at 0300am is not conductive to healing. So I stopped the T3s. Today Post Op day 3 I had a shower and am begining to feel better/stronger off the T3.

Waiting for the finale pathology report and my post op f/u is Oct 25. Such a loooong wait.

questions: How long does it take for the tongue to develop some normal function? Not so numb? ROM? I was told that the recovery is similiar to a tonsilectomy, really?? This is what a tonsilectomy is like?

I also have a white 1cm patch under my tongue that I have been told by the Head and Neck RN via email that is part of normal healing, but I am a nurse and this doesnt look like normal epithelial healing??? But then again I am not familiar with Oral surgeries.

I know compared to most here on this site, this sx was a walk in the park and I am greatful for that. Any insight would be greatly appreciated.

Wondering if I will be ready for work by Oct 19? (I have a 2 day work gig for a School of Pharmacology, I get to be a pretend patient, part of their licensing exam process) Doctors told me 2 weeks, and I am not convinced this is achievable.


Tracy
T. SCCA
CO2 Laser Left Ventral Glossectomy Oct 3 2011

Hi - so glad it went quickly for you! The numbness should go away soon. Try drinking your meals for a bit! Ensure or boost. Up your protein intake to help you heal.(Maybe mix in some protein powder with the ensure or take in smoothies if you can). The good thing about ensure is it's a fairly small quantity and you can sip on the bottle over a few hours to try and limit the nausea but still get nutrition) The nutrition will help with the shakes etc... T3 on an almost empty stomach can make you into a mess (not everyone knows this but it has caffiene in it) Speaking will improve- I'm sure your tongue is swollen once that goes down, and the numbness subsides you will be intelligible. Working - I can't say as it depends on how quickly you heal! The drooling is your body's way of trying to deal with what's been done to your mouth. Try adding a table spoon of salt and one of baking soda to a glass of water (lukewarm) rinse and swish and spit!. It helps heal. ( we use this for radiation muscositis) thrush - is a bugger - clobber it before it progresses. Stay away from sugar that makes it worse. Hugs and good luck!

Thanks Cheryl!!

Numbness will go away soon?? Wow ok, was thinking that nerves can take months to regenerate. Good cause it feels like my tongue is wearing a big puffy tight winter coat. My tongue feels like its curled up on the end even though its straight. Just a pressure-vice like throbbing feeling.

I bought some protein powder which I have used before (after gym workouts) but the chalky taste has turned me off. Boost is out of my price range right now as I have no income but just applied for Sick EI. But I am drinking lots of milk, soups, puddings and diluted at 50% pure natural juice (V8 veg/fruit mix ones) Maybe this weekend I will see if I can find any on sale.

I decided to try some gravol, so I am cubing each tablet, as I don't tolerate drugs well. I am small statured to begin with. The 12.5mg seems good tonight actually made me dozey! So I will continue with that for a bit:)

I have some Na Saline from the hospital and do rinses every 4 hrs. Use chlorohexidine rinse BID and brush my teeth BID. I will send another email to the nurse Lisa about the candida and see if we can get on that asap. Developing a sore on my lip, I noticed tonight...likely from the endotracheal tube. Worried it might open up. I noticed a mildly raised area right after the surgery. I have a cardiac condition so I was probably heavily dosed with abx during surgery but none post. Which suprised me. hmmmm....

In the meantime I gather I should stay away from popscicles(sugar) I have had two.

Thanks Again.

Tracy
T. SCCA
CO2 Laser Left Ventral Glossectomy Oct 3 2011

Hey it does take a while for nerves to regenerate but I think some of the numbness may be related to the freezing. Two out of the three times I had a biopsy believe it or not it took a week! For me to start feeling my tongue. (the last guy was a butcher!) I know this was a surgery but he may only have removed a bit so it's likely not major nerve damage. If you hate the protein powder, I'm sorry some of it can be chalky, but try adding it maybe to your milk in small quantities or making a smoothie out of it. Frozen fruits, protein powder, and milk will make it taste better. Flax seed is cheap, grind some up (just a little) and toss it in. it's good for you as is quinoa - it can be price for a small bag but in cereals you just need a teaspoon and it swells up like tiny tapioca bubbles! It's high n protein. Popsicles- yeah- high in sugar. Maybe some fresh juice? Frozen? It has sugar but not as much and it's better for you! Take care. Going to pm you!