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Joined: Sep 2011
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Bean Offline OP
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I made this mess just Me, and I don't know what to expect on second opinion appt., a biopsy, scoping or just the initial visit so I think I should go it alone,,,but Thank You so much EricS:)

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Bean...

There you go, being the Lone Ranger again!!! You may need someone with you. They have offered (I am so glad they did!) so now would be the perfect time to let them in!!!

Choose the person with whom you feel most comfortable. Then, you will have someone who can keep you steady if it isn't good news...or, even better, someone who will celebrate with you when you hear it's good news! Either way, the person you choose will be thankful you included him or her and proud that you showed confidence in his or her ability to help you. If you have oral cancer, you will learn very quickly that you will need to learn to rely on other people for help. Not that it hasn't been done by a couple of Lone Rangers before you. But, you have people who want to help. Please allow them to show their love and appreciation for you. I'm thankful for the times I spent with people I love when they needed me. It is less of a burden than you think.

I hope you get some good news tomorrow and the ENT is able to put your fears to rest. I'll be thinking about you tomorrow and will be sending thoughts and prayers for a clean bill of health.


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Agreed - I was alone when I got my news - not good. Even though it came from my family do who's a darling. He immediately set up my scans and blood work and wit ing a day I had the results... So I could breath over christmas. And let me tell you I'm a pretty tough cookie. We all do things that aren't good for us - this is a wakeup call. Put it behind you and stop beating yourself up the past is gone there's little you could do to change it - work on the future! Hugs - good lck!


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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Bean Offline OP
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Just got back from the ENT, I got scoped and set up to have Lazer Surgery late October,,,,He does not feel that it is Cancer at this point,,,,Thank You God and to all of You wonderful People on here, I want to Thank You from My Heart and Soul for being there for Me and giving Me the courage to follow this through,,,I hope I will still be able to encourage Others to get things checked when fear overcomes Us,,,,My Love and Blessings to each of You for Health, Colleen

Last edited by Bean; 09-29-2011 03:14 PM.
Bean #140789 09-29-2011 03:12 PM
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Excellent, Colleen! You have grown in wisdom and strength in the last few weeks, and will be able to better care for yourself and others. Be sure to let us know how the laser procedure goes!


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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Hi Colleen!!!

That is wonderful news! You did it! You already do encourage others by being brave and going to your doctor. You are a great example of the benefit of paying attention to your body and taking action without procrastinating. And, I'm sure you will be able to help people who come along after you by reassuring them and encouraging them.

Keep us posted on how everything goes with the laser procedure. You are good person and deserve all the best that life has to offer.

Sending wishes to you for health and peace!

Sandy
xoxox


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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"OCF Canuck"
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That's terrific. I'm so glad for you!


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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"OCF Canuck"
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Colleen

Great news!!! I just had CO2 Laser Glossectomy to the Left Vental (underside) of my Tongue only 6 days ago. I was in the hospital overnight and had little to no pain. I am only having pain now cause I cant tolerate the Tylenol 3's that I was prescribed and stopped taking them. Needless to say 24-36 hours later, I am taking them again!!! Just need to take some gravol with them and see how it goes laugh

Like yourself I am a bit of a glass half empty girl. I suffer from anxiety and stress which is the primary cause of Lichen Planus, or as you are learning Moderate Dysplasia. (dys: meaning difficult Plasia: meaning cells) So these were cells that are not normal but not cancerous, just different. Only 15% of people with Lychen Planus go on to develop Ca. I was one of them. Am I angry? Resentful, Pissed off?? Hell yes, it makes me human. Yip going through all the stages of grieving and wondering....

The surgery was very superficial. Healing can be a little slower than scapel removal but less chance of complications and re-occurance. Talk as much as you can, it helps to rebuild your muscle tone. Remember the tongue is a muscle so exercise it. I am having a hard time with this because I live alone. So I am learning to read outloud everything I type!! My cat thinks I am nuts!! Hahaha

I had a CT of the head done before hand to rule out invasion to my lymph nodes. Ya nothing! So don't be suprised if your ENT suggests one as well, or as I have learned on this forum after the surgery, all depends I guess. And of course lots of good ol' blood work. The CT was very quick and the contrast dye they give you makes you feel like you peed your pants, I checked and laughed with the technicians when I got up from the table and I asked the girls 'Bet everyone does that!!" laugh

It may be in your best interest to talk to your ENT or family doctor about anti-anxiety medication and ongoing counselling. Here in Canada we are fortunate to have Medical coverage, and once diagnosed with Cancer the resources are plentiful in Urban Centres anyhow.

As a patient, whether in the US, UK or Canada we still need to take responsibility for ourselves, in accessing what is available, advocating for ourselves and learn to ask for help and then ACCEPTING help from our family and friends. Our friends want to help. They dont need to feel guilty for not knowing and not being there for us at our time of need. I am learning this the hard way. I was alone with all this and only after surgery am I now telling people. I live alone, be blessed that you have family to support you!!!

Nutrition is key, as Cheryld will tell you. (love you Cheryl!) smile So get cracking and bulk up now!! Protein is key!!!

And as the old saying goes...."When we know better, we do better" this goes for education and action!! Feed yourself with a wealth of food, love from family and friends and you WILL find the strength and motivation to quit smoking and avoid the alcohol. You would be blown away at the kindness of srangers, and sometimes talking to a stranger seems easier. I am a big advocate on Education. Its what I do. I am a teaching nurse (or was, and will be again)

Yes you will need time off from work, simple fact of life. Family will have to adjust and work extra hours etc to help out. Small price to pay to have Mum build up her strength and get healthy isnt it??!!

Take one day at a time. I am a reaslistic and very pragmatic person and yes reading some of the stories here on this Forum can cause anxiety and fear to ease out of every pore. I am a nurse so I know the worse case scenarios and all the inbetween and I was still shaken and put off from some of the stories here. I have learned to be selective in what I read. I am not a T4 so I wont read a topic about T4.

Any questions please ask....I may not have the answers but I may be able to help you formulate the right questions to ask your doctors and caregivers.

<3 Hugs
Tracy



O


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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