The other day I left a post about me going for a biopsy and mentioning HPV. Nobody responded. Well Im leaving for my biopsy now, I hope it all turns out well. I was hoping to hear from somebody before I left but Im guessing you all are a bit busy yourselves trying to stay strong and healthy. I wish nothing but the best for all of you and your families and if I do not hear anything from anybody I will know I am not welcome here and will deal with this, whatever it is, just like I have everything else. Alone...

Maria-
Wow, sorry I missed hooking into the computer yesterday. You must have caught a bizzare time when no one was home because the site is usually busting with support! And no, you are not alone!! You have prayers coming your way right now. Don't you dare give up! When you check back in from your biopsy just know that there was someone with you! Hope you hear good negative news and then you won't have to join this club of people that would rather not be here! - Kris

Maria
Hey we really messed up on this one.. not like us.. this is the club no one wants to belong to.. but if you have to join you will be welcome here forever... had my biopsies 3 weeks ago.. hope surgery next week... know the next few days will be very long for you... but remember "it aint cancer till they say it is"... a motto we all hang on to.. take care and come back and tell us how it went.. we will be here for you during the wait for the results....
love and hugs
Helen

Maria, I`m sorry also, sometimes when we don`t have the experience with a certain issue, it`s hard to respond with anything useful.......but stick with us. We will be here for you, you can absolutely count on us.....none of us are quiters, Love and Hugs, Dee

Thank you so much for the responses, Im sorry if I was so abrupt but to be honest I was scared. The biopsy removal was Not bad at all, it took longer to numb my tongue than to actually remove it. The surgeon said I should have the results back by Friday morning, to give him a call. I wonder if he meant at 12:01am on Thurs. or perhaps 9am on Friday lol While he was looking he did say he saw the lump where my tonsil was suppose to be, but I told him I had them removed when I was three years old. Told me 40 years ago they practically RIPPED them out OUCH... Said they usually leave some behind and in this instance it can very well be the one on the right has always been larger than the one on the left and I just never noticed ituntil I got the growth on my tongue on the RIGHT side and became much more aware of it. But he suggested I go back to my ENT which I already called and have an apt. on May 12th. To all of you, I have read your posts and my heart and prayers go out to you. None of you are QUITTERS and I apologize once again if I gave that impression. I would make the Sad smiley face but I dont know how to do it. DARN DARN DARN lol

Maria,
I know that waiting for test results is really hard. Hope you have something to keep your mind occupied until Friday.

Also, sometimes when people post here somebody else comes along and posts to the same area and the previous post gets buried before anybody has a chance to see it. I know that has happened to me once or twice. Be assured no slight was intended to you.

I'll be thinking of you and praying for good news.

Anita

I'm so sorry your posting was missed, too. Something odd must have definitely happend, but glad you're getting responses now.

I was given the same spiel about HPV. Harvard Medical is currently studying the connection between HPV and head/neck cancers. Hopefully their findings will result in similar tests to pap smears.

We're keeping our fingers crossed for good news,
Sabrina

Here' hoping that the biospy comes back benign. Sorry about the HPV posting, I just don't know enough about that to post anything.

You are not alone!
Lynn

Hi Maria, praying you get good results from the biopsy!!!!!!!!!God Bless, Carol

Hi everybody, just got home from work and signed right online to read the newest posts. This group is such an inspiration, when I feel fear gripping me I sign right up to this post and somehow I feel better. As Ive said, the biopsy shouldnt be back til Friday, however, since the growth was removed from my tongue, I can see better into my throat, and on the right side I see a new growth. When I went to the surgeon to have the growth on my tongue removed I should it to him, he said it looks like my tonsil is swollen, only thing is, I had them out when I was 3 years old. Can a person get tonsil cancer if tonsils were removed? I dont see it on the left side, only the right. However, I must also say, I only saw this on Saturday when I was looking in my mouth at the growth on my tongue, so dont really know if its always been there or not. I have had a sore throat for the last couple of days, could it be its swollen on one side due to this? My oral surgeon said he doesnt go any further back then where he did, I have to go back to my ENT, which I have a scheduled apt. for on May 12th. Im just so tired of being afraid all of the time. Last May my doctor also did a sonogram of my thyroid and found a 3mm nodule, went to the Endocrinologist and he said to watch it, went back to him in Jan. Thyroid blood tests came out good, and the nodule did NOT increase in size, said come back in a year. A lil over a week ago, had bloodwork done, T3 UPTAKE was low, and now ofcourse you all know what Im thinking, Thyroid, growth on tongue, growth where tonsils used to be-this doesnt sound good to me. I go to the dentist frequently for work, I cant imagine all the times they look in my mouth they havent see some of these things. I dont know if Im now just being paranoid of it is is All somehow related and Nobody has picked up on it. If somebody has had similiar things happen to them or can give me some encouraging news, I would really appreciate it. Thanks to all. And Mark and Dan didnt know you were both awake til I read the earlier posts. Welcome back to you both...

Maria,

Calm down. You are doing everything you can and it is time to sit back and let the mind rest. We all go through this crazy period of imagining the worst and we never get to relax. That's why we tell others to do it!

I am hoping the news is all good and praying for the best for you.

Ed

Maria
This part is the wall climbing club... includes hanging from the ceiling as an extra... I try now only to look in my mouth once a week.. I can see more things that are not there than enough.. Calm dwon if you can.. we both get our results on Friday... glad it's not a Friday the 13th
Take Care
Love and Hugs
Helen

Maria, please try to calm down, are you taking anything for anxiety? As Helen say`s this is when we climb the walls and hang from the ceiling. Frank had the cancer, but I`m scared to death to look in my mouth. The waiting game is terrible, and I think sometimes we imagine the worst to prepare ourselves for the worst, at least I do.....................We`ll All be sending lots of Prayers and Love You`re Way.............Dee

Helen/Dee I havent quite made it up to the ceiling, just half way up the wall LOL I dont know where everybody here finds their strength, but Im trying my best to emmulate all of you and be strong myself. Helen I read your profile, taking care of your husband and yourself, and you Dee my heart goes out to you about Frank but I see you have something to look forward to in the future. The funny thing, when I was younger, I thought nothing would ever happen to me, but over the years, too many bad things have. Brief run down, my dad abused me, had a brother pass away on my 16th birtday, took care of mom for over 5 years, take care of learning disabled brother, both parents and all grandparents passed away. Raised my niece for many years, she passed away two years ago at the age of 20 from CF. My other brother just recently passed away 2 months ago, lost one of my best friends a month after my niece due to Melanoma. I mean it just goes on and on. I also told myself that God wouldnt give me anymore than I could handle, and in some strange way I felt proud to know that he felt I was this strong. I tried to think that all the bad was behind me, that now, FINALLY it would be my turn to find happiness. But as I read all the posts on this forum, I feel a bit ashamed at my lil pity party. ALL of you have been through so much, yet you keep encouraging others, you keep your sense of humor, you keep LIVING. I dont ever recall anybody ever having such an impact on me, but this forum is a God Send and all of you are truly Angels of Mercy. Whew that was close, instead of Continuing UP THE WALL, I jumped off my platform LOL Helen Im keeping my fingers crossed for a NEGATIVE RESULT-damn that just doesnt sound right does it, here we all are trying to be POSITIVE and Im wishing for you to be NEGATIVE lol

Maria,

Have you read the Purpose Driven Life? One of the premises of this book is that God uses our tough times to build character for His purposes. It sounds like He has chosen you for great things. I am sorry you have had to endure so much in your lifetime.

Think of all of us as participants in one giant game of "leap frog". We go through treatment and those around help us; we finish and we help those behind us; they finish and help the next group, etc. We all have started at about the same point you are and soon you will be helping someone in your exact position.

Remember, we all are subject to our pity parties at times. We all have climbed the walls waiting for news and we all have allowed our circle of friendship and support to grow bigger by the day. Welcome to the circle!

Ed

Ed, excellent advice, I am reading The Purpose Driven Life right now.....Everything you said to Maria is sooooo true!!!!!!!!! God Bless!!!!!

Maria-
You did ask a question a few posts ago if anyone else had a similar experience with tonsils. My tonsils were removed when I was in 8th grade. The left one regrew. I'm not sure why the doctors were reluctant to remove it again while I was in my 30's or 40's. They mentioned it was a tougher surgery when you are an adult, but when they got around to it when I hit 50 I didn't find the tonsilectomy that stressfull or painful. They weren't expecting the results to come back positive and hadn't prepared us for the possibility of cancer since I did't smoke and had no other symptoms. I am praying you have good news tomorrow on your biopsy results, but you might consider having the regrown tonsils removed anyway.The peace of mind might be worth a week of throat pain. Good luck to you! - Kris

Maria,

This AM after treatment, I was having my own "pity party". Every one of us in there succumbs to it at one time or another. It's healthy, as long as we don't dwell forever. Incidentally, Regis and Kelly had a Mother's Day Special, which I cried through the entire time, and the "warm and fuzzy feeling" the show gave snapped me out of it.

I think the same thing about the strength of people here. When they're complimented, everyone is so modest. Then my friends/family compliment me, and I wonder what drugs they're taking to say that. I guess, consciously or otherwise, we see a task and force ourselves to go through it. Willingly or not, we have to get to the other side of each obstical. The hurdle didn't seem so high after we were over it.

A few weeks back, after the realization of Cancer really hit I was simultaneously diagnosed with Endrometriosis. My body "flipped out" and there wasn't a milimeter on my face (eyelids included) that wasn't covered in hives. The saying "God only gives you what you can handle" wasn't cutting it anymore. I thought he'd made a mistake - each thing individually I could handle, but everything at once? I was sure the perverbial horse had trotted away - there was no way I could get back on it.

Then someone said "If He brought you to it, he'll bring you through it." I don't know why, but I've held onto that and it helped me get through those really dark days. Those dark days that we've ALL had. I hope it helps you.

We're here for you. This is an awesome group - Cancer sucks, but it'd be a difficult decision to trade it in and miss out "meeting" all the awesome people I have through this. I'm praying your biopsy comes back clean, and you still have been able to meet everyone here.

Good wishes,
Sabrina

Hi all
OK.. now on plan b.. plan a was better.. plan a was laser surgery... plan b is a flap.. don't need this.. as most of you know my husband is blind and he don't do notes.. should be fun at our house for a while.. am going to borrow a lap top and use text to speech.. so he will still have to be good.. next meeting ith docs on the 24th of May.. then I suppose will get a date.. looks like you will be seeing a lot more of me as we start countdown and my nerve goes..
Thanks for all your support so far..
love and hugs
Helen

Hi Helen, sorry I must have missed something, could you tell me what is going on with you? Love, Carol

Hi Carol
sorry... the plan was to laser off the crazy cells .. high grade dysplasia..(third time) but it's all in the wrong place and the area is to big... back of tongue and tonsil area.. so out it all is to come and a flap to go in.. posted my results from the biopsy on the 19th of April thought that was it all sorted... should have known better..
I liked plan a.. oh well..
love and hugs
thanks
Helen

Well, Helen, you know I`m just looking for a good reason to come to England...........so just let me there and I`ll hop on the big bird and join you......Love and Hugs...........W.W.N.

Helen,

I am sorry to hear of your news. I know it is not what you expected or wanted. Are the talking partial glossectomy? I know it is difficult but try to not climb the walls right now. You actually have a bit of a breather for about 2 weeks or so. How much of the red wine does Spain produce? Just a thought. My prayers and love coming your way!

Ed

Helen, Sorry you couldn't have had plan A. I would have preferred that myself. My son's LAX team is coming over there this summer, we had them visit us last summer and the summer before that, my husband and son went with the team to England, had a great time....visited Wales, my oral surgeon is from there. My son is not making the trip this summer tho, hurt himself playing, needs to heal up, etc. God Bless You!!!I am thinking of you and praying!!!!

Helen-
Hang in there during this disappointment and know that we are holding you up with a lot of prayers!!! Enjoy a few goodies before the big day and promise yourself a big reward when this is over! A picture of a special trip or holiday after treatment sometimes helps get over the low spots. Stick some pictures of Las Vegas on your frig!! We'll give you a big hug when we see you there! - Love Kris

Maria - I had the biopsy taken from my tongue on Feb 12th. I tried really hard to convince myself it was nothing serious -- plus it was so darny busy at work that helped to distract me. I go the diagnosis at 4pm on Feb 19th. The dental clinic at Sunnybrook hospital (Toronto)called to ask if I could come in because the dentist's schedule had changed. That's when I knew. But both dentists I saw that day (BTW both were women) were wonderful and positive. Plus I work for the Ontario Dental Association and I already knew all the stats. They already had an appointment set up for me at the regional cancer centre the following Trusday morning. Funny enough, the next day I was leaving for a 3 day cruise from Miami to Nassau with my sis and another friend. I have to admit, while it wan't the best vacation I've ever had, it sure beat hanging around the house thinking. You see, I'm a Libra, and we think way too much. Plus the food was really good. And even though my tongue hurt at this point I did manage to eat everything I ordered including the drinking the wine. Too bad you can't book a last minute trip to take your mind off this until next week.

Maria,

Someone once told me Mother Theresa said, I know God doesn't give you more than you can handle, but sometimes I wish he didn't trust me so much. People often say to me, "you are so strong" they don't see me at home and no one knows what they can come through unless they have walked that path. We've all had really hard times, but with friends and family that just want you around no matter how you talk, eat, or what you look like helps me everyday.

We here for you!
Lynn

Helen Im sorry things arent working out the way you had hoped, all of you are constantly in my prayers. My doctor just called said the biopsy came back fine, benign lymphatic tissue. They are mailing me the results so I can post them. I still have to go to the ENT on Tues. because of the growth in the back of my throat (dont know if its a tonsil or not since they were yanked over 40 years ago), the oral surgeon who did the biopsy of my tongue said he could only go back as far as my molar, that the ENT has to look at this. I guess what Im asking is this: Since this growth on my tongue came back good, is that better odds that the growth in my back of my growth is benign too? I know you dont know til it is actually biopsied, but just thought I would share. I dont know how all of you stand it, each and everyday, the waiting, the not knowing, but in the end, I guess thats LIFE...Looking forward to hearing from all of you... Just a question, I have seen a post of everybody getting together soon, God willing my other biopsy comes back benign, but would still love to meet all of you if that is possible. You are truly an inspiration. I am currently part of an organization for Cystic Fibrosis which my niece had, who passed away two years ago and would love to find a way to help out with fund raising or awareness or whatever needs to be done to get the word out about oral cancers. If anybody has any suggestions, I would love to hear it. Thank you...

Maria,

I am glad your results came back benign! I hope you have as good a report on the other growth. I don't know about the others but you certainly would receive a welcome hug from me!

Ed

Maria,

This is really great news. I love to hear it! Thanks for getting back to us so quickly.

Lynn

Maria
Thank God your results came back clear.. now you know how to things done.. get the rest checked and then you can have total piece of mind..
Take care luv to see you at the reunion
love and hugs
Helen

Hey Helen,
My prayers sure are with you. I am so sorry that Plan B has to happen. I look up to you so much with what you are dealing with. My hubby couldn't talk for 6 weeks during later part of treatments and I thought that was bad. I am so glad you are finding a way of communication anyway. Are they taking all of your tongue? Dan didn't have the flap, but a graft from his upper leg and a little over a third of tongue removal. The neck tumor popped up just three months later...what a surprise that was! It's been a long, hard road and I just pray for healing everyday and that this cancer would be gone. I will add you to my daily prayer time...that God would give you and your husband what you need to heal and be well again.
Take care,
Debbie

Hi Debbie
Thanks.. am worried about the speech part more than anything.. not sure how my husband will cope for so long.. No the plan is the base left part of my tongue and the left tonsil area.. I am going to take a list of questions when I go back.. my brain went out of gear yesterday
Thanks to every one for the support and messages..
love and hugs
Helen

Maria, so happy to here good results !!!!!!!!And Helen, you know I`m the queen of caring for nrck flaps, grafts, and everything else under the sun............you know I`m looking for an excuse to just hop over there!!!!!! Love and Hugs and Prayers and Incense heading your way..........Love and Hugs, Dee

Maria
Me Too, I ve been sick lately...

I'm happy for you Maria!
Helen, make plan B work for you. You're strong, I can see that in your words.
Love, Minnie

Congrats, Maria! Good news is really a joy!
Kim

Thanks for sharing the good news!!!! There will be a email sent to all members of the OCF foundation soon. It will give all the details about the 1st reunion. Good luck on youe visit to your ENT. Welcome to the Oral Cancer Foundation Maria!!

Dan

Hello Helen , just caught your news...bummer..
will social services send someone in to give you a hand for the first couple of weeks? My daughter lives in Corby..can she help?
Never mind the stiff upper lip thingy...scream loud and clear if you need some support.
lots of prayers heading your way.
marica

Hi Marica.. Yep.. DO NOT like plan B.. got lots of questions when I go back.. mainly how long in the hospital and how long before I can talk even a bit..My Mum will be there for John but she's 80 so I don't want her to have to do to much.. hope the family will help.. he's not going to cope I may just run away and hide.. If he can't manage I can't do this.. Don't get me wrong for a blind guy he's good I get tea in bed and he helps a lot around the house.. he vacs I dust.. but he needs help with hot meals and sorting his clothes and he is going to be bored out of his mind while I'm in hospital... don't know what to do about that one.. may just scream LOUD....
Thanks for your prayers and concern
love and hugs
Helen

Scream away, Helen. If I can't hear it in Vegas, then you aren't being loud enough!
God bless............prayers headed your way!
Judy U

Helen, I`m going to use my daughter`s favorite saying "Trust the Universe, Things Will Work Out" I`ve been hearing this on a regular basis for the past two months, and so far so good..........Love and Hug...........W.W.N.

Helen,

I hope I don't sound too trite or patronizing but my heart goes out to you. I wish I could come over there myself and help you.

My grandfather was the branch manager in London for the Mainichi News, the largest paper in Japan just before the war. I saw a picture of Sir Winston Churchill holding my uncle as a baby in his arms by a fountain that I believe was in front or down the street from Westminster Abby. Because of his friendship with Churchill, he had to return to Japan when the war started and eventually died in the Phillipines just after the war ended.

Maybe I need a trip over there to seek my roots and help a friend. How long is the flight?

Ed

Well Ed and everyone... WOW
Thanks for all your great support and also for the offers of help.. helps to know that what ever happens you guys are out there.. Dee, Ed and several others are looking for an excuse to visit the UK.. lets have the reunion in London... perhaps the flights cost are cheaper U.S. to U.K. from here more like telephone numbers than flight costs... still while I'm laid up NO RED WINE so I should be able to fly 1st class :rolleyes:
love and hugs to you all
Helen

Higuys, feel like youre an extended part of my family...Thanks Dan, cant wait to get the invite, looking forward to meeting everybody. I just found out something very interesting. In one of my earlier posts I had said I have had quite a number of tumors biopsied, and well thank God so far all benign. One of my doctors thinks I May have Cowdens Syndrome. I had never heard of it so ofcourse I ran to the internet (damn near tripped LOL) to look it up. I have also commented about my bloodwork, and asked if there was any connection between all the tumors and was told NO...Well apparently there is... The only bad thing is with this Syndrome you have about a 20%-50% chance of getting breast cancer within your lifetime, about a 10% of thyroid cancer and about 5% chance of endometrial/colon cancer. How much does this Stink... The good news is-Im alive and well and plan to stay that way... I Dont mean to preach, so please dont anybody take what Im about to say that way OK? I have never been the Go to church type of person, but I have always given my heart and soul to God, I guess over the years I lost faith because of all the bad things that had gone on in my life, but I must say, I had a lil one on one with The Big Guy and I feel awesome, its as though all of my fear has left my body. I know I will be fine, and live a long and happy and healthy life. I will just be more diligent in my doctors apts. Sorry if I went on and got a lil off the subject, but thought it was something interesting that came my way and that I would share. Who knows maybe some of you, also have had other tumors and werent aware that you may have a mutated gene Pten... One never knows... Hopefully will chat soon. Everybody have a wonderful night and stay healthy...

Hi Maria
Try to forget the statistics, you can read them both ways.. that means you have a 80% chance of not getting anything.. s### though.. you don't need anything else.. I have Lupus as well and I jump from one symptom to another.. does my head in
take care..
love and hugs
Helen