Hi ALL
Amazing forum. So much info and bravery...I am a 51 yo female, non-smoker, very light drinker, HPV positive who finally had a tongue bioppsy on 6/8/12. Have had leukoplakia on side of tongue with a constantly changing, very painful sore in area. Also a sore throat for over 1 year on same side. Drs kept saying there wasn't anything there, but I constantly feel it. My tongue has been an issue for over a year now, and I'm really worried. Found this forum qnd feel I am better prepared for the dx next Friday, good or bad because of it. Any words of wisdom while I wait?
Tinara
Hi Inara,
Glad you have found this forum. I am farely new to this forum and haven't really posted much, but you are right there is a lot of wisdom and emotional support from all. I wish you the best next Friday. It is very hard to wait, but hopefully you will get some good news to find out what is really going on.
Robin
Hi Tinara! Hope your biopsy turns out to be nothing serious! If it would be cancer, then you have found the best place for info and support. Keep busy, read a book or do things that require concentration to help pass the time. I know its very hard to not worry but you will feel a whole lot better if you stay productive while waiting.
Good luck!!!
You are doing all the right things by seeing a doctor and getting a biopsy.
Keep telling yourself this.
The chances of it being cancer are not high as this is an uncommon cancer - especially for a non smoker. However, if it IS nasty, then you can be assured you have done everything to ensure a good outcome by being so vigilant.
Just a point regarding the HPV positivity. The HPV that causes oral cancer is usually type 16 or 18 not the garden variety wart causing sort of which there are over 140 types. Even the type 16 or 18 sort is cleared by 99% of people in one to two years. So, depending on the type and how long ago you were diagnosed, your positive HPV status might not be anything to be concerned about right now.
good luck and let us know
Karen
Hi there - also to add to the above information - if it is a cancerous lesion on your tongue likely it's not related to your HPV status. usually it's base of tongue cancer or tonsillar cancer that is HPV related. Base of tongue is the part of your tongue that runs down your throat and is not visible. Hopefully it's nothing! Hugs and good luck.... but if it Does come back positive.. Push to have it dealt with asap, and for oral tongue cancer the first line of defense is surgery then rads and chemo depending on the staging and involvement. Take care.
HPV+ cervically is not related to oral HPV+ nor has it been shown to ever "commute" from the cervix to the oral cavity within the same host. Always best to stay on top of anything strange in the oral cavity that doesn't resolve itself in a few weeks. Do keep us posted but let's hope it's nothing serious.
Tinara - you're definitely doing the right thing by having it checked out. I second all the comments above. I know it's tough waiting, we've all been down that road. But hopefully you'll get a clean diagnosis.
Hang in there... and keep us posted!
Hi Tinara:
Wishing the best for your results. If the news turns out to not be so good, you have a lot of people to turn to on here. I'm new to the group but am amazed by all the information here. Take care.
Thank you, everyone, for all your support.
I got the results back today and, unfortunately, it is early stage tongue cancer.
I will be scheduled to have the nickel size lesion removed, and a PET scan to check for possible metastization. My lymph nodes do not appear swollen, so hopefully not. I will keep checking in with all as energy permits....I am incredibly tired. Could be simply dealing with this new, added challenge.
You are all such a true Godsend! Thank you for being here!
Love to all,
Tinara
Hi Tinara!
So sorry to hear about your test results, but it sounds like it's been caught fairly early so that's good! I'm so glad you have come here, these are wonderful people who give so much of themselves. The support is endless, as is the knowledge. I hope you take some time for yourself in the coming days, rest and pamper yourself because you deserve it. We will all be here to help you through what's to come.
When is your PET scheduled for?
Hang in there and best of luck!
Amy
Hi, Tinara,
So sorry about your diagnosis, but so glad that you found us. You will find that the most amazing people you will ever meet are here. Good luck on your new journey. We will be here for you every step of the way. Blessings and hugs,
Sorry to hear this Tinara. Keep us updated and we can help answer any questions you may have every step of the way, everyone is so supportive here.
Sorry to hear about your test results, Tinara. You are going through exactly what I went through a little over two years ago. As I, and everyone else has mentioned, this forum is the right place for support and information. I wish I was on here when I went through my two bouts.....it would have eased the anxiety, fear and uncertainty to know that there were people who dealt with/were dealing with the same issues as me. Now that I am a survivor, there is still a lot of information here for me, and I'm sure you will find it to be the same. Take care of yourself and keep us posted whenever possible.
Hi there mine was the same early stage. That's a bit of a comfort but push to get them moving quickly. Hopefully they'll get you in soon and if your ENT suggests a neck dissection - go for it even if there appear to be no lymph nodes involved... I say this because my tumor was well differentiated and after the biopsy despite 3 clear scans (between dec20 and jan4 ) it had moved into one node and broken brought the capsule - by the time it was removed along with a chunk of tongue 4 weeks later it was 1.5 cm (the node) it didn't matter of course as my surgeon told me from the outset he was removing 40 nodes. There can be microscopic cancer in the nodes that goes in detected by a scan - particularly with tongue cancer - anne o here had a superficial tongue cancer (very very small) but it too had moved to the nodes very quickly - better safe than sorry - I don't want to scare you but some drs make The mistake of trusting the scans remove a chunk of tongue and send the patient home thinking theyre cured only to have a node pop up later... Hugs we're here for you - I imagine your head is spinning - try not to freak you will get through it. Also get to a ccc! If you can! Take care
So sorry to hear your news Tinara. We will be here for you every step of the way. It will be hard, but you WILL come out the other side ready to live life again! Please keep in touch. We absolutely KNOW what you are going through and can feel your pain. You have tons of support here. Who will be helping you through this at home?
Blessings,
Kathy
Hi Tinara,
So sorry to hear that your results were cancer. I would be happy to help in any way if you have questions. Went through very similar discovery and diagnosis when I discovered my cancer. It's a scary process but treatable.
It's okay to be scared. xo
R
David back to 100 miles a week, Any old timer that might be able to move some of this to my own string? Good luck Tianra I get the feeling tongue cancer is a cut and ;fingers crossed; a lot of rehabilitaion? While HPV and nodes what I am coming to terms with is chemo rad good sucess but a long haul and a hard road.
GOOD LUCK. appears we are all on a steep learning curve. Cuban keith seeing the wisdom in your messages of support. David If am am reading correctley you got out of this illness quick and smooth. I am 12 days into a chemo, chemo radation standard treatment,for 12 weeks? Standard treatment for HPV 1cm base of tongue, 5cm neck node levels 2/3 no spread. The 5 cm is down to 2cm since start of Induction chemo Cisplatin/5FU I am back on my push bike doing 20k
for charity tomorrow?
PS where do I learner how to load up my signature at the bottom of my posts? Too much Duff beer.Doh!
A Million apologies to Tianara for asking my worry on her post but I am on a learning curve when it comes to posting, blogging. Sufficent to say that 3 months ago this site and the old timers on it saved my sanity.
all I can say is that with more results you become more calm whatever the dx and you aquire the skills and knowledge to go forward and stay positive. I hope as the other posters suggest this might be some simple non cancers tongue issue
SORRY DUFF BEER MOMENT AGAIN and you only visit as a supporter, if things prove a little more invoved you have come to the right club. YOU ARE NOW A FULL MEMBER my cancer has been a kick up the rear and my life is improving by the day and I am getting support from friends and family that I thought I had lost conections with hope you can find some positives in this thing.
this is a club Grouch Marx would refuse to jion? and he smoked cigars.
Carry on Regardless.
Keith, your posts are a tad difficult for me to understand. Not sure what you mean by DUFF BEER MOMENT. I hope it doesn't mean you messed up the post b/c you had one to many? So you have finished 12 of 84 days chemo/rad treatments?
No I don't think I got out of my Tx quick and smooth but rather I progressed thru recovery as most do. I did have a strong will to get back my pre cancer life and I wasn't affected by the post Tx depression as some are so I was blessed in those respects. I also didn't have any pre or post Tx surgery so that didn't complicate my Tx nor my recovery.
D'oh DavidCPA
Duff beer is Homer Simpson's favorite brew. Actually this imaginary beer manufacturer presented on cartoon TV series The Simpsons, has become a reality in the UK by simply adding an adjective to avoid legal issues. "The Famous Duff Beer" comes in bottles or cans and at the moment is available in England, Wales, Scotland and Northern Ireland.
Charm
Hi Cuban Keith:
To answer your question: <<PS where do I learner how to load up my signature at the bottom of my posts?>>
Just go to the top of this page and click on:
My Stuff
Edit Profile
Scroll all the way down to Box where it says:
Signature
Insert whatever you like - then
Preview - and if you like it then -
Submit.
That's it!
Just wanted to bring this back to Tinara. Have been thinking about you this week and just wanted to see how you were doing. Lots of questions and shock at this stage I am sure. We're here for you.