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The Mouth Cancer Foundation Online Support Group Mouth Cancer Forums Members Forums Questions & Answers need a few answers|
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OK, I'm the one in charge of making the decision for my father in law, who just came home from the hospital today. And I'm really freaking out, and crying, and trying to hide from the rest of the family so they don't freak out.
Basically, the pathology found node involvement from Papa's neck dissection, which makes him stage 4. Please remember that I am in India, and "teams" for cancer treatment are far and few between. There is little "management" going on here, i have to piece it together. And I need some help translating papa's pathology from you cancer geeks. Please.. even if you only know a few answers or some resources, that will help. I'll summarize, and based on this will include questions as I go, and would appreciate a summary for action (as in should we start chemo tomorrow or wait the standard six weeks like the nccn guidelines state?) removal of T2 moderately differentiated tumor on anterior tongue (about 50% of left side). modified radical neck dissection of left side levels 1-4. (I thought surgeon was also go to remove level 5 and can't figure out why he apparently only did 1-4???) clean margins of tongue. 2 lymph nodes out of 33 show tomour metastasis with perinodal extension. what does this mean? what is the prognosis? what is perinodal extension? is that a distant metastasis? what is the clinical staging? stromal desmoplasia and lymphovascular invasion is present. lymphocytic response is present. please don't tell me to just trust my doctor. we don't even have our radiation oncologist selected yet. it was my goal to first find the best doc and the best radiation system before having papa get started. our oncosurgeon didn't stress quick action...how soon should we start RT? |
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Wow, yopur asking us a lot of tough, hard questions and we're not doctors remember. When I was diagnosed with tonsil cancer and a couple cancerious nodes, the doctors were at first going to operate, then follow with radiation. They decided the cancer was too far down my throat, making the operation far too risky, So we went with radiaqtion and chemotheropy instead. We started as soon as we could but First I needed a peg tube plaqcement and a mask that they put on me so that they could radiate me in the same place each time. I don't know how helpful this is to you. I think it's important to start treatment as soon as posible.
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some quick (but more than a few) answers:
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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My father has stage IV base of the tongue cancer. They are treating him with chemo and RT - I would say that if your father in law just came home from the hospital you would want a few days for him to recover as the chemo and RT can take quite a bit out of a person.
I am sorry you are feeling all of the burden but try and reach out to others in your family or friends (and here) and build support. Keep reading information so you can ask helpful questions. Does he have base of the tongue or oral tongue cancer? do you know what type of chemo they plan to use? I found reading old posts on this board very helpful. I feel like I know many of these folks and yet I am new to the board and the treatments. Even with a good team you are going to have to be proactive - not reactive - it's hard but try not to stress and depress but educate and empower!! I put together a whole "tub" of products for my father like the Biotene mouthwash and gum (and spray) and he has used almost everything in it! Make lists! List of items that might be helpful - lists of questions to ask - list of things other have found helpful like sleeping elevated and so on. If one thing doesn't work then try another - if cold water hurts then try it room temperature or visa versa.... keep trying!! |
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i just reread and realised you said anterior part of tongue...
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Everyone here is awesome. I love everybody. Thanks for all your answers. I feel a lot more hopeful this morning. God bless you. I have a to do list and am getting it going now. Papa can end up just fine, he will have a long life.
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YOU GO GIRL!!! Yes, make that to do list - and then it will lead you to another one!! While some of the posts and stories were kinda scary
 it also gave me great questions to ask, good information to review, and led me to the ideas of stuff to put in my father's tub (I put it all in a tub because it was too heavy for a basket and I am too practical)  You sound better - we will have ups and downs through this but keep moving forward as positive as you can!!  |
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Thanks dear:-) I am having my sister in law bring all the biotene stuff from USA when she gets here in about another week. Let me know if there is anything other than biotene stuff you think would be useful...some of this stuff doesn't exist in india.
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There was also a spray - it wasn't Biotene but was in the same isle at my local Walgreens - he loves the spray at night - sometimes he wakes up and the pain is so bad and he can reach for the spray and get some instant relief while he gets to his medication or a sip of real water - but he can reach for the spray in the dark and still half asleep.
I jsut joined this board right before you so we are very close in this process. Keep in mind what works one day may not work the next. He loved the gum at first and then it became a lot of work! Watch out for thrush. Buy Ensure type drinks for nutrition. I am a little different than you as surgery was not good opetion for my father but others like maybe Pembo might have better answers as they have had the surgery. I bought my dad some opaque paper coffee cups with lids so he can use them as "spit" cups for his mucous and then throw them away (sorry mother earth) but it gives him independance and no one has to "clean" his ucky cups. Just keep trying - whatever he likes to try and eat - let him try - he might take half a bite and not be able to do it but just keep trying. I also try to keep some normalcy so his cancer is not the big elephant in the room - dont ask him 50 times how he is doing cos he may just say "ROTTEN" -- try and do some normal things - I talk to my dad and he doesn't have to talk back to me - I just tell him about my day and he can just smile and nod  soothing music, good books, movies, everyone is different and so will be the response - stay in touch with folks on this board, keep learning, you will be a wonderful help! |
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Natasha - there's a wonderful gel made in the UK, Radiance Gel, that was highly recommended that I used during RT. I ordered an extra jar that I didn't even open - if you'd like me to send it to your s-i-l so that she can bring it to you, let me know and I'll put it in the mail.
Radiance Gel If interested, send me her name and address in a PM. Mimi |
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I will click on link - is this for the skin or mouth - I may go order some for my dad too
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i see - i got my dad the aquaphor cream...
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helpingdad, are you talking about biotene oral mouth spray? i will let papa know about the cups idea...since his surgery tho i think it is good for him to practice swallowing so he gets his coordination back, but during rt i bet that will be really appreciated.
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YEs, there was an oral mouth spray but it was not made by Biotene but in the same isle of products - if you find one from Biotene - I would buy it - try them all!!
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how is papa? how are you?
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