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The Mouth Cancer Foundation Online Support Group Mouth Cancer Forums Members Forums Laryngectomees Forum Please help me though this.|
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My mother was diagnosis today with Laryngeal Cancer and a team of doctors stated she need a total laryngectomy surgery. Her cancer has spread to her lymph nodes but no other organs. I'm nervous and scared and need someone to talk to about what's going on. My mother is strong and said "take the voice box" out "I want to live".
the cancer is in the lymph nodes and on the voice box. She's due to surgery on the 16th of February. Have anyone experience this type of surgery? If so, please share your experience with me. |
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Good Morning,
I am not a doctor so I can't offer any professional advice but I do have experience of your problem.Two months before his 68th. birthday my father was diagnosed with laryngeal carcinoma,two months before my 68th birthday I was diagnosed with oral carcinoma.My father had the necessary surgery (laryngectomy)and survived a further 11 years cancer free,then he got a chest infection and died in his sleep.I will not pretend that these problems are a picnic, they are not. Your mother seems to have the right idea and the determination to live,and this is an important factor.She will have to adapt to a new lifestyle,there is a forum on this website devoted to this problem which will help.Read the postings on that forum,ask any questions you wish someone will be there to help. Please give your mother my best wishes and please keep us posted on her progress. Keep Smiling  John |
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Hi
My husband had the same surgery, the actual surgery is not quite as horrendous as you may think, the aftermath problems are quite a struggle, but every case is different. She will have to learn to cough through the hole in her throat, and as they can't shout for help, this causes some panic. The post op recovery is fairly quick, most people seem to be out of hospital within 2 weeks. Being unable to talk causes a lot of frustration, but there are various devices to help them to speak again.Anything I can help with please ask. Jennie sankey |
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I'm new to the board and respond to John's replied differently. I gather thinking about my mother not having her voice box..mean no more communication with her when we talk at least 10 times a day from a distance scared me to "NO Communnication" at all with her. We must now find other means of talking. At present, the family is more worried with quarntine of the cancer, extract it and my mother will to live. She a strong woman and just want to continue to LIVE. We've discuss some of the aftermath situation we may run across and willing to join together and make her new lifestyle change less painful for her to adapt. We love our mother and have never imaged she would have cancer, nevertheless throat cancer. As you stated, everyone is different in their surgery but we should look for at least two weeks in the hospital and a lot of tubs coming out of her body. So will she have to live with a permanant hole in her throat? If so, are there devices to cover the hole so dirt, smoke and other items want get into the whole. Jennifer, I really appreciate your guidance and help. Please continue to communicate with me. Sporty, By the way, Everything I learn from this board I have past on to my family and they are so blessed to received the information...GOOD and BAD. |
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Good Morning John, You really don't know what it meant to me this morning to see responses from you and Jennifer. I'm on edge about the cancer and trying to educate myself with the disease. Sorry to here of your lost and I wish you the best and speedy recovery. So your father is a cancer survivor before he past. What are some of the lifestyle changes you had during after his surgery? Did he have to have Radio and Chemo therapy? If so for how long? Thanks for the information and I'll keep you post on my mothers progress. Sporty |
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Good Morning Sporty, You may get part of this message twice,I pressed the wrong button and lost the first attempt.
The hole in the throat is permanent and will have a removable plastic insert to keep it open because this route is the only airway,breathing through the mouth/nose will no longer be possible,the mouth will only be connected to the stomach.This tends to cause the patient some distress and the explanation of the procedure is probably best left to the surgical and nursing teams since they are experienced in handling the explanation on a "need to know basis"As Jennifer says the healing process is usually shorter than you might expect and every patient is different. The speaking device has a "science fiction" sound but the important thing is that it restores the patient's ability to communicate verbally,but this will not be fitted until some time after the initial surgery. My father had radiation treatment first in the hope that it would deal with the tumour,initially it did but after six months the cancer returned and the only option at this stage was surgery,complicated by the tissue changes due to radiotherapy resulting in a long healing process.But he got through this stage and learned to enjoy life again. Major illness brings with it frustration and difficulties for both patient and carers,be prepared for this but as I said earlier leave the detailed explanations to the experts they will understand how much your mother is able to cope with.Feel free to ask anything you wish someone will know the answers. Keep Smiling John |
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Hi Sporty
As John said there is a plastic device to keep the hole open, you can also get a 'bib' type cover, looks a bit like a baby's bib, to keep out dirt etc. The communication won't be a problem if you approach it with humour, the only problems we had were with outsiders who treated Paul as if he was brain damaged. He even managed shopping trips etc on his own, we pre-printed cards for buses and shops with common phrases, most people are very willing to help when they realise the problem. As far as the op goes, it looks a bit like someone's had their head removed and then re-attached ( my daughters description!), staples all round the neck and several drainage tubes, but they were all removed within 5 days. Good luck, feel free to ask anything, I'll help if i can Jennie Sankey |
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Jennifer and John,
The experiences of our board members are an invaluable help to others. You are both great examples of this. Thanks for helping Sporty out. Best wishes Vinod  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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John, sorry for the slow response but stress and work has been keeping me busy to keep my mind off my mother situation. My mother surrgery is scheduled for next week. The family is flying home to support her and be there for a week so if responses are slow it's because We are trying to keep complete work so we can stay a WEEK with her in her recovery process. I'll write more later. Thanks so much. Sporty |
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Jen, The family is preparing for the surgery so responses might be a little slow. Once I return on the 21st of February I will inform you and John of my mother's progress. Thanks so much. Sporty |
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Hello again Sporty
I have only noticed yout location is South West UK. as is my own and, I am the South West representative for The Cancer Laryngectomee Trust. I wonder what partof the area you live in, I am in North Somerset. Your Mother will probably have a hole in her nexk - as I have - to breathe through. There are manufacturers supplying neck covers. Personally iknitted a series of openwork bibs in many different colours to use with each outfit. Computers are so easy to use now, you can persuade your Mother to use one and set up a special message service between you both, even maybe use web cams. Alll the Best. Do let us all know how you are coping, we are here for you. |
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Good Morning LMB, I will say sorry for the slow response but I was ouot of town for my surgery scheduled for the 16th February) which was postponed due to the doctor omitting my mother should have been taken off theone a day "Asprins". As you know Asprins are blood thinners and during the surgery she needs to clog, if not she could bleed to death. The entire family mad it to the hospital for the procedure only to be told the surgery will be postponed. At first the family was upset because we all came so far to accomplish and support our mother in her times of hardship. But everything happens for a reason. We could have lost our mother on the table if someone would not have acknowleged this simple action. Her surgery is now scheduled for March 2, 2006. Every day I talk to her her voice is getting a little faded out like someone has a BAD cold. She's in "NO" pain other then swallowing. Her spirits and faith are still high and positive. Funny thing. We came up with a system for when I contact her via phone also. Once I call, 1 tap is for NO...2 tap is for YES and 3 is for OK. We actually laughed about it and she said... You teach sign language. Teach me now. She is so STRONG LMB I have to pull my strength from her. Thanks for writing and I will keep you post. By the way, you stated 12 years and you are still here. I will keep you and every one in my prayers each and every day. God speed. Sporty |
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Good Afternoon Jen, Just dropping you a line to say I have not forgot about you and John. As you can see from my message to LMB my mother surgery was postposed until the 2nd March because they forgot to take her off "Asprins". Everything happens for a reason. How are you doing these days? Please keep in touch. Sporty |
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Good Afternoon John, Have I every told you "Thank you" for getting though the days, nights and weekend? Well, Thank you for your support. Please read the commet to LMB about an update on my mother. Please keep in touch. Miss you, you are such a dear friend. Sporty |
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The Mouth Cancer Foundation Online Support Group Mouth Cancer Forums Members Forums Laryngectomees Forum Please help me though this.