Hi my friends...

It's been so long or short... the last time I was here I got so depressed I didn't want to leave any message. But now I am very scared again because we received news from the pet scan, my dad has to get checked this friday, I'm desperate.... there is a spot on the bottom of his tongue, we didn't tell him yet. I pray to God it is treatable... any words will help...

Yes, its been a while. We are still here and able to help you. First CALM DOWN! Getting upset is a natural reaction to hearing such bad news. Its ok to be scared. Best to try keeping busy so it will take your mind off of this.

PET scans are known to have false positives. Its happened to me and many others on here. Another thing to remember, a recurrence is not always the worst possible outcome. Your father has options as he hasnt had radiation. Ive gone thru oral cancer 3 times. I know several members who have had it twice and a few who have had it 3 or more times. Think positive! I hope when your father has a biopsy the results come back negative for having cancer.

Best wishes to your father!

Thank you so much for your reply and wishes Christine!

I will try to think positive and keep myself busy... it's so hard... thank you

Benfry - I do remember you from the last time you were here and I know it is so hard to wait and worry about tests and all the "what if's", but Christine is right, it's best to keep busy. And when you start worrying, try to give yourself a time limit of just a few moments and then force yourself to think of other things. One of the best things I found that helped me was to exercise or go outside and walk around a little bit. Sometimes all I could manage was to stand up and bend way over and touch my toes a few times, take a warm bath, eat some chocolate, read. When I couldn't sleep at night, I would vacuum the carpet or do some other physical thing. Think about all the good things that could happen and they really could! I'm hoping for the very best for your father and for you!

Thank you so much Christine and Anne-Marie,

I've been trying to keep myself busy. I am feeling more calmed I guess it is normal to feel anxious. I will focus on the good things. My mom just told me on the phone that my dad can't eat and has pain, he's been eating soft foods because something hurts when he eats so I just can't wait to take see what's going on so that we continue the with this fight...

So I have bad news...
My dad's cancer is back, it is in the base of the tongue, his surgery is scheduled for june 8th, he is very depressed, I don't know how to cheer him up.
The good news is we are together... My mom and I will be taking care of him after his surgery, we were explained the surgical procedures he will have done, but I am more concerned on what is next. We feel guilty we didnt get a PET scan earlier. I guess that doesn't matter now...

Im sorry your father is facing a recurrence. Best wishes with his upcoming surgery!!!

Sorry to hear about your dad - hopefully he will come through this quickly - they are doing surgery for BOT - I thought that was usually caught with rads and chemo?
Or do you mean under his tongue? Not base off his tongue ( which is down the back of his throat) regardless - he does have other options after surgery - rads and chemo - it's not a 100% guarantee but according to my rads guy it cuts the chances of recurrence down by half. Hopefully things will go well easily for your dad will say a prayer for him and your family!

Good luck!

Hi everyone,

I'm just desperate, depressed because my dad is very worried he will loose his speech... I really don't know what is going on yet We just got back from my dad's appointment with his surgeon. We will go to see his primary oncologist tomorrow morning to explain to us where exactly the tumor is and what is the surgery about. In my plain words, the plastic surgeon explained to us that he will close the hole in the tongue that the surgery to remove the tumour will leave. He will take a piece of the skin in his forearm or his chest or belly and transplant it to the site site of the removal surgery. If things go well, the transplated tissue will stay put. The plastic surgeon said that his speech won't be the same, and he will be sent to speech therapy, and there is a chance he wont be able to talk, but that is known until after. He mentioned he recently had two patients, one that was able to talk after the surgery, and one who was not (which caused us so much pain but also hope).

I don't know if I mentioned it earlier but my dad doesn't want to have his surgery done, he thinks he will get better with some home remedies, this is so sad because I understand where he is coming from, he is very affraid, and so are we and I hate having to hold my tears and tell him everything will be okay.. I'm sorry, I am not feeling well, this is too much.. please someone tell me how to keep strong.. I better post a new topic with questions

It's weird that they are grafting to the base of the tongue - usually they graft to the oral tongue- I'm just wondering if tou have all the information.

Clarify what you can tomorrow - good luck. And tell your dad home remedies are not something to risk your life over.

Hugs

Sorry for the misinformation, I assumed the cancer is in the base of the tongue, but we will see his oncologist surgeon tomorrow and he will tell us exactly what is going on. The last appointment we had with him was to talk about the PET results and he said he would tell us more after an MRI. Tomorrow he will be discussing with us what is going on and what he saw in the MRI and the location, etc.

Today we visited his plastic surgeon who told us he will be reconstructing his tongue. He explained the procedure to us.

I made sure and I told my dad we can't let him postpone anything. He is so afraid because all this is very hard for him. I hope he can find the strength to get through this.

xoxo

If it is his oral tongue that is being grafted - not his base of tongue - then his speech may be affected a little (at first a lot) because it's very swollen. Post op But it does get better - my tongue was getting better then I had radiation and chemo - so now it's swollen again. But my speech gets clearer daily. Just a few of my letters are a little funny still. And my voice is a little deeper but I can speak and I think they removed a 3rd of my tongue - there are people here who've had their entire tongue replaced and can still speak.. Everyone is different- tell your dad to do the surgery because you want him around for as Long as possible. The rest you will deal with. Hugs!!

I just finished printing all the replies from my posts for him to read. Thank you!

His cancer is in the right side of the tongue and jaw now. I saw his new lump and blister on the back of his mouth, in the wisdome teeth area. The doctor confirmed it was the cancer.

Scary for all of us... But I can encourage him thanks to all of you.

I will start a new threat in the Currently in Treatment page. It is an advanced cancer, he will have a neck dissection, removal of as much as they need from his tongue, reconstruction using free tissue transfer and microvascular surgery, a mandibulectomy: immediate mandible reconstruction with fibula free flap, radio and chemo.

Please keep us in your prayers.

XOXO <3

Stay positive and strong! Think the best until you hear the worst, that is my motto. If they still can opperate and fix it than that is good! Like I told Ron, until you hear those words "terminal" than you go on living! And we have not heard those words dammit so LIVE! Print off some survivor stories and let him read how they felt and went through tough surgeries and how they are happy to be alive after all they have gone thru. I'm hoping Ron will read the ones I printed off and set downstairs for him where he sits and watches TV. He hasn't been down there since I did that, he's been outside doing odds and ends, he seems a bit more happy today or more relaxed, I'm sure he's not happy bout the news but I think maybe he is realizing how important it is to fight this and to live. It's going to be rough, we made it through 1 we can do it again together! Never give up!

Thank you

Will stay positive and strong!

I just gave my dad the printouts from yesterday and he said thank you and asked me to you ask if anyone ever felt some tingling in the tongue and also in under the jaw, where the lower mandible and the neck meet. ?

The doctor and nurse said that everything he feels is related to the tumor. But it would help him to cope if he reads someone else has been through thisor had this sensation and that it will be okay like the doctors say.

I will print the new posts too.

Suez,
I am happy Ron seems more happy and relaxed. It feel great to see them doing better, even if it is only a little bit, it is always great news.

Will never give up

I have tugging in my tongue - the new part - and old - but I'm told it's normal as it's still healing - and getting some sensation back - tell you dad good luck... We're all pulling for him. And @suez glad he seems to be coming around maybe it was the initial shock? Hugs to you both!!!

benfry, so sorry to hear about your dad.. my dad also was diagnosed with floor of mouth and tongue cancer, it didn't get to his jaw, but they took it anyways.. because as they explained it was "knocking at the door".. they also removed lymphnodes on both sides.. reconstructed with fibula which was used as his floor of the mouth.. i will not lie to you it is extremely emotional and a long road ahead, BUT i look at it as they are still here with us fighting, and we will stand by them.. please keep us posted.. in my thoughts and prayers always..
please feel free to private message me with any questions..
prayers out to you..
nicki