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Hi LMTU,
Well done for getting through the needle and scan. It's one step at a time, so keep going. Just thinking "The needle and the scan" sounds like a Neil Young song? Good luck Ken One Year Survivor |
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Hi Kenny
Yes but whats worrying me is what is next the doctor calls it cervical lymphadenopathy, I thought that is what women get. My neck gland is some times throbbing so Im so worried its malignant cancer and what will heppen next? Thanks again LMTU |
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Thanks Kenny,
Yes but it make me wonder whats in store for me if i have to have a biopsy can it be does with a local anaesthetic my worst fear it to be put under a general anesthetic. |
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Hi LMTU
Whoever decided to give two different body parts such similar names must have done it just to confuse people--cervical spine (which we all have and goes from the base of the skull to the shoulders) and cervix (which roughly half of us have and that's all I'll say). Whose brilliant idea was that? Did your doctor give you anything for the pain? I hope it's better than what I was initially given--Vicodin. It didn't touch what I've since learned was "referred pain" but it was the strongest med they could provide me (it was a charity clinic and I was uninsured). Do you know if the doctors are planning on a surgical biopsy or a needle biopsy? That would determine what type of anaesthetic they'd need to use. You should explain this to them in advance--it really will save all of you a lot of aggravation. Please let us know how things turn out. Julia Howdilly doodilly, survivorinos! |
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Thinking about you, LMTU! How are you doing? Please take advantage of your new friends on this board. We're here for you.
Mimi |
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Bad News I'm afraid, I had my MRI scan, I went to find out the prognoses yesterday, the doctor said grave news I'm afraid, you have a mass at the back of your tongue, so far 1/4 of your tongue has a mass, he then took a biopsy and said in his experience and looking how fast your lymph node is growing, it looks bad, I would say it’s an 80% chance of Cancer, and if that is the case to operate, all your tongue would have to come out and your voice box, also Chemo and radiation treatment, if you think the tongue coming out is to invasive, we could try Radiation and Chemo alone,
So as you can see, I am devastated, I would like to know if anyone has had this happen, if so could I expect any more of a quality of life, if I stick to Chemo and radiation treatment only or will it still grow, or has any one any experience of 'back of the tongue' Cancer, I have been told eventually, I won’t be able to swallow, then my throat would close up, sounds like some horror film. Any advice, Help, I’m terrified! As you can well imagine. |
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Hi LMTU
I am so sorry to read your news. You didn't go alone, I hope. My tumor was limited to my tongue (still scared me s***less, though), so surgery was all I required. Some of the folks on the site have been through situations like yours--whether as a patient or a carer--and we're all here to help each other. It's hard to say how you'll respond to treatment, but it's certain that any treatment is better than not doing anything. Cancer, unfortunately, isn't like a cold--it won't just clear up on its own. You're not in this alone. Julia Howdilly doodilly, survivorinos! |
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Thanks for your quick reply Julia, yes as you can imagine I am devorstated, no I was alone and had to sit and take it all in, as if I was hit on the head with a hammer.
I'd like to know if Chemo and radiation alone will shrink the cancer enough, to give me any further quality of life. |
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Hi
firstly lets just establish that BOT cancer with total glossectomy,neck dissection ,removal of the voice box,chemotherapy and radiation are not so rare and have been known to be very successful.The bottom line is an aggressive cancer that needs aggressive and some time radical treatment.If you are in good general health,and it hasnt already spread to other parts of your body,then it is very doable.Percentages and statistics mean nothing.My husband was told he had a 90% of a full recovery,its just sods law he was in the other 10% and died 8 months after diagnosis. I am not going to kid you that what lies ahead will not be painful,possibly disfiguring,traumatic,very very hard emotionally very very hard physically but whats the alternative?.I think we both know the answer to that. Yes you could have chemo and radiotherapy but with oral cancer unless its very early and quite small you need to throw the kitchen sink at it.Quality of life against quantity may come in to the equation,but only you can decide that.Are you strong enough to fight this? Being scared is just where you should be now its a scary thing you have been told,but once the shock has worn off a bit,you need information and lots of it.What will happen if i do this? What will happen if i don't do this?What will happen if i just have chemo and rads? Last but not least you have us to help you through,and you will need support and a carer.Its a long road love but you can make it. This message has been edited. Last edited by: cookey, Love liz Never take your eye off the ball it may just smack you in the mouth |
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from Malignant Tumors of the Base of Tongue
Please click link to Malignant Tumors of the Base of Tongue for full information. Another source of information: Mayo Clinic: Base of Tongue cancer Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice. "If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally." Lao-Tsu, Tao Teh King |
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Some encouraging news:
Treatment of base of tongue cancer with paclitaxel, ifosfamide, and cisplatinum induction chemotherapy followed by chemoradiotherapy. Laryngoscope. 2008 Aug;118(8):1357-61 Hancock SB, Krempl GA, Canfield V, Bogardus C, Kojouri K, Kaneaster SK, Medina JE. Department of Otolaryngology, The University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA.
Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice. "If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally." Lao-Tsu, Tao Teh King |
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Thank you so much Cookey,
As you may be know, to be told there is not a lot they can do apart, from cut your tongue out and voice box and the chemo and radiation may help some what, they don’t know till they try, is a lot of help when you feel so desperate, like you do when your facing death . I don’t think I’m brave enough to have total tongue and voice box removal, but if I do rely on chemo and rad treatment, will this give me any longer to live with eradication the swelling and speed of the cancer cells is what I need to know, some how. My problem is all my care and lots of it, is in Canada, there I will only get treatment to numb the pain and lots of palliative love, as we cant afford things like operations, and Chemo there and I have no medical insurance there also, so if I have treatment or chemo I have to have it in the UK alone and what state ill be in after that I have no idea. Thank you for your kind words and Ill keep writing as long as I’m able. Kind regards John Thank you so much Doctor, I wonder if I showed it to my doctor, he would try this, may he does not like new trials, as they do not have enough proof of getting better results with out more trials. I hope you can find other trials, I can may be go on, even though it is not proven yet, I am desperate to live through this cancer, any way possible, if I can have some quality of life also. Thank you for your time it’s a great help. |
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I cant imagine how that feels my friend.I sat in the room with robin when they said the cancer was back and there was nothing more they could do and to this day i dont now how he found the strength to stand up and smile and shake the mans hand and thank him.I would have been a screaming gibbering idiot.
Perhaps you could do induction chemo first as they do in the states and see how things go ,maybe put off the big decision for a while and see if that works first.I dont know what to say really a lot has to do with age strength mental attitude the desire to live at all costs..there are so many variables.Somepeople will just go straight for the full monty,some will say no to everything but perhaps they dont know what an unpleasant end to life oral cancer untreated can be. I still think you should ask your doctor the questions i suggested and then see how the answers make you feel. Love liz Never take your eye off the ball it may just smack you in the mouth |
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Yes this is an unknown road to me, its not affecting me so far and I’m not to worried, because I feel so strong and healthy, but when I am finding it hard to swollw and then cant breath, I would think it will be the start of hell.
I hope I can get something to slow the cancer down and srink it to a livable size, so I can get a while longer out of it to live, not much point having my tongue and voice box cut out, what quality of life is there in that, unless you know some one who has had it done and is living a reasonable life. Id like to try this new Drugs coming on the market that seem to be working to srink the cancer and help for a longer life but I have no idea if the NHS well prescibe them to me. http://www.ncbi.nlm.nih.gov/pubmed/18528311 If you hear of any new trials I can take I'd like to know about it. Thanks for all your kindness LMTU |
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lmtu,
I wish I could comment on your last link but I'm a dunce when it comes to some medical reports. I need a translator. It seems you're doing your research no matter how difficult it is to undertake and I commend you for that. I have a question: of what country are you a citizen? You mentioned upthread something about Canadian family or that perhaps you're Canadian, but ineligible for their health plan. All Canadians are eligible for healthcare although the details vary by province. You'll get world-class treatment there as well as in the UK. If I had a choice I'd go to wherever I'd have the best support from family and friends. This is one that you can't do alone. I am so sorry to hear your news but also know that there's hope. Take care, buddy. Mimi |
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The Mouth Cancer Foundation Online Support Group
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Introduce Yourself
Neck Cancer question.
