Hi Everyone, its Lyn. Sorry I havent been around lately but between appointments and more appointments I just keep running out of time. Everyone seems to know whats BEST for me. Whats BEST for me is to see the end of this stupid disease mnot just for me for all of us! THAT is whats best!

I have a question. As some of you know I had tongue cancer and lost about, eh..40% of my tongue...(yep it was replaced by a flap from my inner left wrist - no Im no a hairy person so no, my tongue isnt hairy and I dont have to shave it nor do I wear my watch on my tongue!) Just though Id get those out of the road before moving onto business. Seriously, today I had a biopsy taken from a lump that has appeared on (kinda underneath) my free flap near where it joins my normal tongue. I am worried that if it is cancer NOW WHAT DO THEY DO TO ME???? I would really just like to know the options. Its only been there for a few days but although I finished radio in Feb the ulcers have remained...kinda like a constant party in my mouth, as the little rats move around AND they vary in size and shape...and Im not invited to the parties. I know this as I am having NO fun during them (most of the time.gggggrrrrr! So, I have been in constant varying degres of pain since my op (Nov last year) Im still using mouth wash, still on heary painzappers (personally I feel the mouthwashes work better if I hold them in for as long as I can. Esp. the cocaine one) and anti anxiety pills. Anyway, has anyone here had cancer twice on their tongue and if so, what treatment/s did you have and ...wow....I have so many questions It would probably be better if you emailed me if you are out there instead of me boring everyone else on here with my tongue of woe! Needless to say I am not a happy camper tonight and I am really scared I am going to lose more tongue...and if so...what are the consequences. Do I eat soup forever and speak like someone with a soccerball in their mouth? This is all made worse...far worse...by the fact that I am/was/will work hard to be one again/nearly was again/ a Singer and I was almost at the point of performing again...NOW THIS HAPPENS!!! I am not so sure I have it in me to go through the last 8 months again to be told I am gonna die anyway (which I am ok with). I would appreciate anything anyone can offer. Please dont think Im rude if I dont reply its really late here (Aussie) and Im off to bed Hope you are all doing better than me tonight! Love Lyn

I had it twice but 2nd time was on the other side of my tongue. Personally, I believe that the right side cancer (2nd one) was there at the time they did the first surgery as I remember complaining about the pain on the right side as well but people just listened politely and blamed it on something else. But anyway...

I've had it twice now, 2 surgeries, 2 bouts of radiation and just went thru another round of tests. I too always like to know that there is SOMETHING that can be done. This last time I said...okay....what if it is???? MO said we're not without options - surgery perhaps chemo?? So who knows what they might do IF...., but it is great to know that there are at least options to consider.

I have about 1/8 of my original tongue and apparently I speak like someone who is deaf, but I CAN speak. I am back to eating well (too well??) and while I do have to stick to a somewhat limited diet of softer foods, it seems a very small price to pay. I can't address the singing issue as I never could sing but I'm sure this is a great loss for you, but like the eating issue, there is no question that we all have to make huge adjustments in our new normal to deal with this cancer. Hopefully along the way we can stop to count our blessings as well as our losses.

Don't be terrified of radiation..you get thru it one treatment at a time and we are all here for you. Soon you will be wondering what you were terrified about!

Donna

Hey Evil Twin. These people will think I'm nuts to call you that. I was ready to check out your tongue watch and reset your clock if necessary. I'm glad you came in here and posted the updates on yourself. I am glad you got an answer from Donna already. Maybe Brin Hill will join in and give you what he knows. I feel much better about it now that you have some great firends that will help you with info. Your partner in crime..... Ole EzJim

Hi Lynn
I did not have my notebook with me at home and have just read you post in the office this morning.
Unfortunately I only have 5 min now to reply but will send more soon.
(About to go in to a training course)

1. I hope that people reply to your post where we can all read it as I am sure it is of interest to a lot of us here.
2. I am sure my doctors in Sydney told me that you could not get cancer on the flap !!!

Love
Gabriele

I've had cancer twice on my tongue -- First time was in 2005 with an external tumor on the side of my tongue (surgical removal followed by XRT radiation) -- Second time was in June 2008 with the cancer inside the front of my tongue, for which they gave me the free flap. At one year post-radiation, I had a CAT/PET scan which was clean and then in May 2007 had a biopsy that was clean. ENT was very surprised (and disappointed) that new cancer had shown up.

Lynn, Hopefully it isn't cancer twice. That's the first thing. Just because they did a biopsy doesn't mean it's cancer. Ask EZJim. I really feel for you being a singer and going through this. I was never a professional singer but had a really good voice which I loved to use and sung in a chorus and it is totally gone (though every now and then I get a good note out -it's wierd). In my case, it is one of many losses I have had to deal with as a result of the cancer battle. Including that I DO have to eat soup forever (and since I could not swallow at all for a year or so I am grateful for that). I also have trismus, chronic mouth pain and ulcers that pop up, yadda yadda.

Some days, life sucks and I am really angry about all the losses but then I get a pretty morning like this morning with a slight chill in the air and birds at my bird feeder and music I love on my stereo and people I love nearby, and a garden to go out and dig around in, and a job that is challenging fulfilling(most of the time) and I am so thankful for what I still have. Which is all to say that if I ever DID get cancer again, I'd still fight the fight for a chance at life, at least I hope I would, despite all the losses.

But I also feel for you in terms of the struggles and the losses. Believe me.

Nelie

Nelie, I sure am glad I stopped by to read the posts especially yours. I am supposed to get a scope and dialation at least 2 times a year for my esophagus and forgot. I'm glad you have it in your profile. I was supposed to call my Dr when I would be available.

Thanks everyone...I feel a bit better. Im not as depressed as I was the other day. Im still not fond of the though of that radiation again! I got so sick and it burnt me like hell! I am now allergic to...wait for it...GOLD!!! I cant wear any jewellery. Not sure if thats happened to anyone else, but if so, does it go away or am I stuck with it? (not really a big deal I will just get a tattoo haha! I havent heard anything back yet but Im back to my ONC and the Dental Prof on Monday (your Sunday) So hopefully Its nothing but scar tissue or ulcers...anyway if it IS cancer again I will be back.,...OH by the way ..."Hi Evil Twin hehehe" Love Lyn
PS I hope you are all getting what you are praying, asking, begging and wishing for....even if its to be able to eat chocolate again (to give you all out there who can't taste it new hope...I CAN EAT IT AGAIN!!YAHOOO!! - My Butt doesnt think that news is as good as my mouth and brain do! haha)!

Luv Ya too Evil Twin. My gums are starting to hurt big time. Maybe from trying to chew food with them . Teeth in there would make it much easier. How in the heck do you get toothaches without teeth. I know Lyn will have an answer for that one. LOL I'm glad you feel better Twin and I sure liked the last couple of emails you sent.. Have a good night all.

Wishing you all the best for tomorrow Lyn.
Where would you get the tattoo ?? The mind boggles.
Please let us know how you got on.
Love
Gabriele