I am returning to this site for the second time to give my experience strength and hope for you.
I was first diagnosed with tongue cancer back in December 1998 and since that time my life has been a series of many ups and downs!
Surgeries:
1. 40% Glossectomy of tongue
2.Left and right neck dissections
3.Left arm skin graft
4.Chemotherapy (Cisplatin) 4 doses
5. 38 radiation treatments

I was a heavy drinker but I didnt smoke
I bit my tongue chewing gum once and it never healed. I think a big contributer was stress from life contary to popular belief.
Anyway i got my strength from God and from fellow survivors who inspire me and give me courage to fight another day.
I now have my speech back after 6 months of therapy but still have difficulty swallowing and with dry mouth.
I had a Petscan done 2 weeks ago and they said it was clean with areas of ambiguity...whatever that means.
Anyway I hope this helps someone and I look forward to hearing more survival stories!!
Bob

Bob, Welcome back. Glad things are showing clean on the Petscan. I don't know what "ambiguity" means either, but if they aren't pushing you for more tests or biopsies, guess its OK. Will pray that your tests continue in the good news area and that you stay healthy. Thanks for posting the good news.

Hi Bob, glad to hear your petscan was clean. That is awesome news. I had the partial glossectomy (2/3) n May 2002, forearm flap, radical neck dissection, two lymph nodes positive for c, 7 weeks of radiation. I, like you, get my strength from God and family and fellow survivors!! This OCF Board has been a great source of comfort to me. I appreciate life much more now than I ever have! God Bless You!

Hi Bob,

Good to hear your test results were good. That's news that we all strive for and celebrate here. I had a total glossectomy in July 2003, right and left neck dissection, 5 nodes positive, abdominal flap, 3 rounds of cisplatin and 37 rad treatments. I've just "graduated" from speech therapy and started eating "real" food in July. So for me things are progressing better than I expected and I can only hope they continue to do so. I've discovered such good friends and found a lot of comfort here on this board. Keep the good reports coming!

Nancy

Thanks to all for replyingso promptly.
Its good to know that I am not alone as this disease can be very solitary.
My faith in God was crucial to my recovery as well as my dog.
Does anyone know if there is a chat room set up here to talk acout this C stuff?
God Bless
Bob

p.s. Bob, my dog has been a source of comfort to me too, he is my little Buddy, I love him dearly!
Nancy, you are doing wonderful, good for you, God bless, Carol

Thanks for your support
We are all victims and survivors at one point and whatever the procees is that improves our pain ...then so be it.
I am no different than the next person with cancer.
I just wanna realize some dreams before I die
Bob

Hi Bob,

It is good to have you back and to hear of your good news. May your dreams be plentiful and fruitful!

Ed

I guess there is no chat room for this subject? So we can discuss our various problems openly and with some heartfelt support

Hi Bob and welcome back! We have discussed having chat rooms before and the cost would be prohibitive. But there is no reason that would couldn't do ICQ or one of the private chat rooms. But the forum is a place to discuss various problems and find support (even heartfelt most times), in your case, "after treatment issues" would would an excellent place to start.

Oh, and a summary of your survival story would be very welcome in my survivor thread.

Hello, my name is Donna. My mother has just been diagnosed with tongue cancer, stage 2. The doctor at Univ of Penn is going to remove part of her tongue, the lower end. Going to do a skin graft and left and right neck dissections. He said she will be in the hospital for about 5 days and then come home with a nasal feeding tube and a temp trach. I am going to be her caregiver-the majority of the time. I am trying to help her come to terms with all of this. One chief question she keeps asking is that if they remove 20-30 nodes out of each side of her neck what will it look like after? She thinks she is going to sound terrible with a horrible speech impediment for the rest of her life. My mother is a 63 year old, vibrant, beautiful woman on the inside as well as the outside. She is not a vain person but she is frightened that she may look drastically different....can anyone help me with this? I feel so overwhelmed I am not sure what I am writing is even making any sense or coming across as I hope it will. I want to help her and I just don't know how.

BOB,


You dont know how wonderful it is to hear survivor stories !! Thanks for the inspriration !


Shar

Donna Rose....I am answering you here, bec. it is where you posted, but you need to post a new topic of your own, so that you'll get more responses. You are getting lost in Bob's thread.

Neck dissection...I am also 63 years young,and, I hope, "vibrant."...I had a one-sided neck dissection, and I think it makes me look slimmer. I told my dr. that I wish he had done both sides so that I would have gotten a neck lift out of the deal!!

Seriously, she needn't worry about the appearance. My scar is visible, but so is my thyroidectomy scar from years ago. I have quite a road map on my neck, but little children don't run in fear nor adults turn in disgust. I don't think that anyone notices it. I certainly don't do a thing to hide it.

Cross that off of her list of worries.

There are many, many persons here who have had varying degrees of tongue removal, and most seem to be doing quite well. I'm sure that they will post soon. And I am certain that speech therapy can improve anyone's speech...can teach a different way to form proper sounds, if necessary.

Have your mother come to the forum, and do some searching. You will find lots and lots of comforting information for her here.

Thanks Colleen.
I am so overwhelmed, not sure where you mean to post...some help I'm going to be!
I'll try again.

Donna.....You have not done anything wrong by joining Bob's thread. It's just that, even though it is about tongue cancer, it is mostly a discussion of his return for a "visit" to the forum after sev. years away.

Your questions and concerns will get better attention if you will click on "New Topic" in whatever forum you choose (General, if you're not sure....There are no hard and fast rules.).and start your own "thread," with your own title. Of course, you can always comment on someone else's topic. Always. But if you have a specific question or concern, it will definitely get better attention as a new topic.

Welcome. Keep writing and asking, and before you know it, you'll be answering other people's questions!

I will write a brief summary of my life when I have a litle more time to do so. In the meantime thanks for replying to me and I am anxiously waiting the results of a PETSCAN examination done last week.
Seeing the doctor tomorrow and will let you know what happens.

Englishbob.