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

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

She's doing the right thing by having it examined ASAP.

Good luck.

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.

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.

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

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

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

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

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

Jude,

Great to hear! I always hate when my PET comes due and then waiting on pins and needles for the results. It's easy to say "don't worry" and hard to do it...but really just help her get it out of her mind and trust her Dr.

Jude...it's ok for you to do the same too...and breath again.

Eric

heres to hoping the MRI will ease ur worries.

I am happy to read that the Doctor is convinced that it is not cancer but has organised the MRI in any case. Even after all my requests I have never had an MRI, CT or PET.
My doctors tell me that it is not necessary!
Even for peace of mind it will be good for your daughter to have the MRI.
Best wishes for the outcome of the test.

We are blessed with an amazing surgeon. He said he didn't think an MRI was necessary, and i asked him what he would do if it was his daughter, and he said he wouldn't do the MRI as he is confident it is scar tissue and the feeling slowly coming back into her tongue. But he also accepted she's a scared young Mum, and he could see he could use it as a measuring stick in the future, so said let's do it.
Funny isn't it how she was scared it was the cancer back, now she's been told it's not, she's still frightened as worried it will show up something else. As I said to her, others worry about their health and they've not had what she's had, so perfectly normal to be fearful, as it's still early days for her.

As a matter of interest to others, a friend's Dad had oral cancer 3 times, started on the roof of his mouth, and the last time was 34 years ago! He's now 74 and in great health.

Thankyou again for all your help, and I might post on the caregiver forum, and also a question about recovery. This has been wonderful to find you even if I don't visit often, although i should as I think how wonderful it would have been to have found this when she was going through her biopsy and diagnosis.Maybe I can help someone else.
Jude

Jude,
Like your daughter I also have 2 small children and was diagnosed when I was 31 and then again at 32. She is not alone in this. I am so glad that the Dr. did not find anything to worry about. Yes an MRI will give you peace of mind. Good luck and I am sure it will come back clean.

Man that is good news and I hope there is a smile a mile wide on her face now. Congrats.

She certainly was extremely relieved. I'll let you know when the MRI is done, no date set for that yet.

Thanks Angelia, no she's not alone in this, but I suspect for most of you even with wonderful family support, there must be those times when you do feel one. Having the little ones is a double edged sword, it's why you have to fight and keep going, but it's also why she fears having this darned awful disease. But she's here and doing okay so we count our blessings. Hugs to you all as each one of you goes about your individual jouney.

Jude