Hi, I'm wendy and am new to this forum. I found it the other night after reading the cancer council nsw Australia forum's and think it's a wealth of information. My partner was diagnosed 2 months ago with advanced oral cancer. Due to it being so extensive he is not having any surgery but will be starting with 7 weeks of radiation, 5 days a week and 3 courses of chemo. The cancer has spread to most of his tongue, the floor of his mouth, his lymph glands and his jawbone. Unfortunately he didn't see the doctor straight away and now we are hoping we are not too late. He is 43 and very fit and healthy otherwise. Even his doctor's are amazed at how he is health wise considering how advanced the cancer is. I suppose my hope from this site is that I will hear from people who have been through this and have come out the other end ok. Also I'd like as much information on treatments and side effects as possible so I can prepare to care for him in the best possible way. He is having all of his teeth out next monday and will be having a peg put in so he doesn't lose too much more weight as he is having trouble eating due to the pain. Any advise on anything at all would be greatly welcomed as I feel very overwhelmed and have no idea as to what to expect from what's ahead of us.

This is the best site possible and I'm glad you found it. There are many survivors currently posting that had the cancer begin where you partners did and we have some posters from Down Under as well and I'm sure you will hear from them. As you can see by my details below I had the same Tx that he will have and that Tx is pretty standard. I can't comment on the decision not to do the surgery that others have had when the primary has invaded the jawbone but I never am one to discourage getting multiple opinions as I got 5 before I made up my mind who and how to be treated. Certainly you have to be mindful of the additional time involved with seeking other opinions so I don't know if you could seek other opinions and not postpone his Tx.

This cancer is aggressive but it is also treatable and we will be here for the both of you as long as you want us to be involved.

Hi David, thanks so much for your advise. We have had 2 different hospitals give us their opinions. The first hospital advised they would not do surgery at all because the cancer was too extensive. The second and current hospital told us they could do it but the after effects would not be good for his quality of life and would only increase his chances by 10%. But they at least gave us the choice. He has decided against surgery due to only 10% chance and the after effects. We are putting all of our hope into chemo and radiation but the doctor's say our chances are minimal. I don't accept the minimal part, especially after reading this forum. The human body can be amazing. Just wish I knew a way to take away his pain. Glad to hear you got through it all ok. Gives me hope and strength that we can beat this.

Hi Wendy
thats a nasty diagnosis in one so young,he must have a very high pain threshold to have been so advanced at diagnosis.You will find lots of help and advice on being a primary caregiver to your husband over the next few weeks,and believe me when i tell you that you will become the most important person in his recovery beside himself.You sound like me in terms of need to know,and i needed to know everything before it happened so i was prepared and had some idea of what to expect,even so there was a lot happened that i didnt expect,but nothing that someone here couldn't help me with or at least support us through.

you will never be alone through this.

love liz

Wendy,

That's certainly a hard decision to be faced with and I know there are many that have had the type of surgery they probably discussed but I have never heard any percentage associated with it and I'm sure that can greatly differ as to the circumstances.

Believe me this topic will get a lot of discussion as soon as more posters read it.

Hi Wendy....sorry you had to find us but you're certainly in the right place. Two pieces of advice as a caregiver - read the posts under the caregivers forum....some really enlightening stuff there. Also go to the last forum, the "Getting Through It Project", and take a look at the "draft copy" which will download to a .pdf file. Wonderful info that I wish I would have found earlier. And then post, post, post.....there are wonderful people on here who will help you all they can.

Cheryl

Hi Wendy- My husband had the surgery with treatment following. Let me know if you have any specific questions that i can help with. Make sure you are strong with the doctors on wanting to know exactly what you are up against. Some will be evasive at first but if you are persistant they will be forthcoming.

Sue

Welcome, Wendy. You are wondering about the treatments, well, for the radiation, 1st thing is they will fit him with a mask after his dental work is done. The mask is like a fish net that is wet when they put it over his face then will dry and harden in the exact shape of his face. This will be used to keep his head still during treatments, it wi8ll be put over his face each time and clamped to the table. If that sounds like something that will make him uneasy (it is for many) see about getting valium or ativan to relax him ahead of time. Also, many facilities have a cd player and will let him bring in his own disc of music that calms him. My treatments ran about 20 minutes each, which seems an eternity under that mask. His mouth will get very dry from these tx so look into Biotene products for dry mouth. I believe they have them in Australia. I don't know what chemo drugs he'll be getting but make sure he takes all the anti-nausea stuff prescribed. Write down all questions that occur to you for the doctors and take notes onf their answers. Take notes on everything as he will most likely be having a hard time keeping track. Hope this helps and best wishes to you both.

Thanks everyone for your advise. It's really reassuring to know this site and all of you are here. I'm sure once his treatment begins I will be on here all of the time asking many, many questions. I've already learnt alot from this site and am about to learn alot more from the reality of our situation. Luckily Steve isn't uneasy with any tests. So far he has gone through everything without an ounce of complaint. Sometimes though I think he is too quiet. His speech now is very minimal due to the pain and communication is hard. I think that's probably the worst thing about SCC. It's like there's an invisible wall around him that I just can't penetrate. He's never been a big talker about his feelings and now he can't. I have no idea how he feels inside, whether he is sad, scared, angry. He keeps it inside too much. I suppose with time he will let me know how he feels and I just have to wait patiently for that moment. Does anyone have any tips on communication. We are using pen and paper alot now plus we have our own version of sign language. I'd really be interested to know what worked for other people though as it's getting frustrating for both of us.

When my husband was trached following his surgery the nurses used a dry erase board to communicate with him. That way you can use it over and over again. My husband endured the treatments without a complaint also. He never showed any fear or gave up hope. Although this was his personality I often wanted him to open up about how he really felt but he never did-it was just his way. Even of he could communicate easily with you he probably wouldn't. Just hang in there and be with him. That's the most important thing.

Sue