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#140459 09-22-2011 12:45 PM
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"OCF Canuck"
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My name is Tracy 46 single, no dependants....currently unemployed frown 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??


Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage


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Posts: 267
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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.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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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.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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"OCF Canuck"
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"OCF Canuck"
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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!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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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.


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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"OCF Canuck"
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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


Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage


Joined: Jul 2011
Posts: 945
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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!



CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Posts: 5,260
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"OCF Canuck"
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"OCF Canuck"
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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!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

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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!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Sep 2011
Posts: 35
"OCF Canuck"
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"OCF Canuck"
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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 laugh 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 laugh

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


Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage


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