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Joined: Jan 2010
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JudeNZ Offline OP
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Hi everyone,
This is my first posting. My oldest daughter was diagnosed November 2008 with cancer of the tongue. I'll never forget hearing those words, "I'm sorry it's not good news, you have oral cancer." I was devastated for her.
They felt it was very early stages, and she did the right thing by going straight to her Dr when she first noticed the lump under her tongue.
She had a large area lasered out and they said no lymph nodes were affected. They felt they had got it all and didn't need radiation. All was good.
Ever since surgery she's been plagued with sore throat and what drs have said is sinus problems.
She rang me this morning beside herself as over the past few days she has noticed a decrease in tongue mobility, and is feeling constantly she has a crumb stuck under her tongue. My heart sank and I felt ill. But went straight into positive mode, saying it could be scar tissue or the feeling returning to her tongue. But inside I feel ill and am hanging on till she sees her surgeon. Luckily she got an appointment quickly so not long to wait.
She is 33 and married with 2 babies 3yrs and 18 mths. Everything in life has been a struggle for her, and I can't bear the thought of her having to deal with this all over again. Thanks for letting me express my fears,

Jude


mother of 33 yr old diagnosed with oral cancer - tongue - Nov 2008. Light smoker. Surgery 18 Dec 2008 - lasered base of tongue and got good clearance. Removed part of tongue itself.
No lymph nodes affected as caught early. Held off on radiation. Recovering well, taking scares in her stride.
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Hi Jude, Welcome to OCF. After reading yours and your daughter's story I can relate to what you mean by never forgetting those words. When my husband was diagnosed in April 09 I went into a kind of shock for quite a while afterwards. Probably a mixture of disbelief and denial. It was without a doubt one of the worst feelings of my life and I, like you will never forget it.

I'm so glad you found us here. The OCF family on here have been the best support to me while caring for my husband and during his recovery. I couldn't have gotten through without them. If you have any questions or even just want to vent some emotions out then this is the place to do it.

Glad to see you are in positive mode for her. It really will help her. Keep us posted on how she and you are going. Just remember that being diagnosed with cancer doesn't mean what we all fear. There are many people on here who were diagnosed with advanced cancer, including my husband, and they are still here to be able to inspire the rest of us.
Wendy


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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She's doing the right thing by having it examined ASAP.

Good luck.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Did they remove any of her tongue?? The least little thing under it will feel like a boulder and even mashed taters feel like a bucket of sand in your mouth.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Hi, Jude. I'm so glad you found OCF. It's a wonderful place to find answers to questions, to vent, get advice and comfort. I found this site a couple of years into my mother's cancer and wish I had found it earlier because I'm sure it would have helped things go smoother for her. Please continue to keep up the positive attitude for your daughter (and you!) - it will help both of you get through this. I'm glad she's getting seen soon and will watch for future posts. I have two daughters myself and I know how hard it must be for you. Take care and hang in there.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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JudeNZ Offline OP
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Thankyou everyone for your words of support and wisdom. I've not been able to post a reply and just worked out why. I was using.com rather than .org.

We are off to the hospital soon, and I hope I have the right questions to ask, not that I actually know what the right questions are. She does have a brilliant surgeon so that's something.

I think after hearing bad news once before, it instils a fear in you it'll be that nightmare all over again. The worst thing for me is she has two little ones she worries about, and went through hell to get them. Finally had IVF and 9 yrs on had her first. She is terrified she won't be here to see them grow up. I try and always be positive, and she says i always say the right things, which astounds me. I need support, as at times like now I feel petrified on the inside, but have to be strong on the outside, always bolstering her.

They lasered under her tongue and made sure to preserve her tongue tip as she is a drama teacher and speech is her way of life. I need to refresh myself with exactly what they did as I've put it out of my mind.

Off to get ready now for her appt and I will report back in later today after work with whatever news we get. But regardless, I'll be back, as you don't get over these issues in 5 minutes and they hover over your head at times.

Thankyou to you all

Jude


mother of 33 yr old diagnosed with oral cancer - tongue - Nov 2008. Light smoker. Surgery 18 Dec 2008 - lasered base of tongue and got good clearance. Removed part of tongue itself.
No lymph nodes affected as caught early. Held off on radiation. Recovering well, taking scares in her stride.
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Jude,

Like your daughter, I was 33 when diagnosed with oral cancer and had two small children. The most difficult thing I've ever had to do was tell my oldest son I had cancer, a year after we lost his grandma to pancreatic cancer. It broke my heart when he began to cry and just said "But Daddy, I don't want you to die!".

I use my family as my strength and inspiration to live by whatever means necessary. Just as you have to be strong for your daughter, she has to be strong for her children. I'm very glad to hear that she's getting things checked out. Best wishes.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Hi Jude- I was 33 when diagnosed too. I'm 36 now and doing well.
I'm so sorry that you are having this scare- I'm hoping its just nothing but scar tissue from her surgery.

We are here to support you through this tough time.

K


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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JudeNZ Offline OP
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Here I am back again,

Our scare is over for the moment. We saw the surgeon this morning and after my daughter explaining her concerns, re decreased tongue mobility, a feeling of thickness and hardness, and problems with her speech, he gave her a thorough examination. There were no swollen nodes which was a good sign. He then checked out the area she was worried about and declared, "I am very sure that's scar tissue." He explained that the site had changed shape and the tongue starts to contract which is to be expected. He also said as the feeling is coming back into her tongue she will be noticing these things a lot more. But he was confident there is no cancer there. She promptly burst into tears,and was then full of apologies.
I asked him how she knows nothing is going on inside, as I've learnt what she says while in a consultation doesn't match the fears she has when she leaves. He said the only way was to do a MRI, which she will be sent an appointment for. He doesnt think it's necessary but decided it will be a good measuring stick for him in the future and give her peace of mind.She's also been having trouble with blocked sinuses, so he's going to include those in her scan. God bless her, now she's worried it might find something.
So I am relieved, but for a couple of hours after felt as if I'd been hit by a steam roller. Thanks you all for your kind words they were very comforting to me. I wish you all good happenings in your journey.

Jude



mother of 33 yr old diagnosed with oral cancer - tongue - Nov 2008. Light smoker. Surgery 18 Dec 2008 - lasered base of tongue and got good clearance. Removed part of tongue itself.
No lymph nodes affected as caught early. Held off on radiation. Recovering well, taking scares in her stride.
Joined: Aug 2008
Posts: 238
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Jude,
So happy to hear the good news for your daughter. Hopefully, the MRI will just be for good measure and she can be totally relieved of her worries. I swear I think mental anguish will wear you out much faster than physical labor. You're being a great mom and I'm sure she appreciates having you there with and for her. She will take strength from you and her beautiful babies to get through all of this. I'll be keeping her and you in my prayers. Take care and be positive wink


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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