#26794 10-13-2004 06:15 AM | Joined: Oct 2004 Posts: 3 Member | OP Member Joined: Oct 2004 Posts: 3 | I am a32 yr old female non-smoker, non-drinker, recently diagnosed with tongue cancer. I had a biopsy on a tumour on my tongue just over a year ago that was benign.I noticed it just after I had my son. Oddly enough the tumour went away after I stopped nursing. I then began to have canker like sores on my tongue that were quite painful. I saw a local ENT who said we should remove it as a precaution. I suppose he didn't do another biopsy because of my age and the fact I had one done within the last year.
3 weeks after my surgery I went for a follow-up visit and this is when I learned that I had cancer. I'm not sure what stage I am, but I do know that there is early invasion. I was referred to an ENT at the cancer hospital in the city. I've had a catscan and they are examining the pathology reports from my last surgery and are waiting for my tongue to heal before they make a decision. They may have to operate again as the first Dr. did not take as much of my tongue as he would have had he known that is was cancer.
I'm pretty overwhelmed with all the info I've been reading. I'm worried that if they don't do any more surgery it may come back. Just a mental thing I guess. I know I'll feel better once I hear their recommendations and can get some answers to my questions.
I'm glad I found this site. You all seem very supportive!Thanks for listening!
Lisa | | |
#26795 10-13-2004 07:18 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | Lisa- Welcome to the site and as we always say welcome to the club no one wanted to join. It is always beneficial to go on this journey armed with as much information as you can find. There is a wealth of information here and usually someone available 24/7 for questions and support. There are also long term survivors here that give us all hope for a future past cancer! It is a tough journey but if we can make it so can you! Keep us informed and I'll be adding you to my ever growing prayer list! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#26796 10-13-2004 07:23 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hey Lisa, Welcome to the board. You can receive so much information and support here. Just make sure the margins were clear from the last surgery. When my hubby had his first surgery, it lasted longer and they had to go back two times to get a clear margin. He had a little more than 1/3 tongue removed and he talks fine. He was also a Stage 2/3, so it was pretty advanced. Your stage might be less than that. His tongue sore was about the size of a nickel or more by the time we received the diagnosis. Local physician thought it was some kind of bacterial infection and Dan didn't even go to first get it checked until many months after he had it. You live and you learn! Try and make sure you have a good support system. Our church and bible study group really helped us during some very difficult times. God bless and take care, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#26797 10-13-2004 07:35 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Lisa, I'm sorry you have to be in this position being so young but you can get through it. FIRST thing I would do in your position would be to get a second opinion. And Lisa, I would be getting it as fast as my legs would carry me and at the biggest and best Cancer Center available to me. If there is one close to you that is great, if not then travel to it. As you will learn as you continue to search this board, often there is only one chance to knock out this cancer and you have to take advantage of this and throw everything at it the first time. You're fighting for your life right now, fighting for the opportunity to raise your child. Arm yourself with knowledge and know what you need for this fight. You can win but you will need to make all the right choices right now. Keep us informed of what is going on with your treatment. Everyone on this board cares. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#26798 10-13-2004 08:11 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Welcome Lisa,
Sorry you had to find us but you certainly found the best website on Oral Cancer. Ask any and all questions and someone will reply. Take Minnie's advice and get a second opinion at a large Head & Neck Cancer Center. I had tonsil cancer, stage 4 and was treated at a local cancer center in Wisconsin. I have had a recurrance about 8 months after treatment ended. I found out this local hospital sees only 5 Oral Cancer victims a year!!! You want the best in this field to treat you. When you educate yourself you will know what questions to ask. Take a friend or your husband along. Write down all the questions you want answered ahead of your appointments. You never remember them all during the appointments. I have to repeat what Minnie said, HIT THIS THING HARD!!!! Hoping your staging turns up low and your treatment goes well. You can beat this diaease!! Many members are long term survivors.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#26799 10-13-2004 08:25 AM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2004 Posts: 76 | Lisa, So sorry you had to hear the "c" word! I have found that it changes your life. I also was told this year that I had cancer in my tongue at 39 years young & have been on a roller coaster ride (as many of these brave people on the Forum are) ever since. Right now I am trying to get on with a major cancer center as I am not happy with the way I hadn't received follow ups, had to get new referrals for my specialists & its the agony of waiting topped with the anxiety of even getting tests done that is driving me crazy. Do listen to Minnie & Daniels advice, you don't need added stress when battling cancer, you need an informed team of specialists who will give you the best care. Best of luck to you. Take care Maria
01/04 SCC of tongue base, T1N0M0 03/04 Partial glossectomy 04/04 Rad 12/04 Throidectomy(follicular cancer)
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#26800 10-13-2004 08:44 AM | Joined: Oct 2004 Posts: 3 Member | OP Member Joined: Oct 2004 Posts: 3 | Thank you so much for the support. It's so nice to talk to people that are going through or have been through a similar experience. I have had 2 opinions at the larger cancer centers in the city. I decided to go with the hospital that deals exclusively with cancer. They have a large Head and Neck Unit and the other hospital refer the more challenging cases to my Dr. This hospital also has an excellent reputation. Question for you...did most of you have radiation? The choice is up to me, but it's not an option they are recommending at this time.
Thanks again! | | |
#26801 10-13-2004 08:47 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Lisa Well, now you need to use the search on this site to find the answers to as many questions as possible and then write down what you want answering at the hospital, as the other have stated you need a major head and neck center, even if you have to travel. We are here for questions, to vent to, or to support you in what ever way you need, please don't consider anything to small or to trivial we are all travelling the same road.. Sunshine... love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#26802 10-13-2004 10:07 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | Lisa-
I had both radiation and chemo after surgery. It is tough when combined but like everyone says, go for the gold!! You may only get one shot at this and I think most would agree our only regret is that we didn't treat it aggresively the first time around. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#26803 10-13-2004 10:15 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Delaneli, Welcome to the site. Sorry you had to find us, but we should be able to help you as your treatment progresses. My cancer was in the tonsil and had moved to the lymph nodes as well, which is different than tongue cancer, but the treatments are similar so I think I can comment on your question regarding radiation. I would follow the doctors' recommendations as your stage may be low. On low stage cancers, stage I or II, they often only recommend surgery as it is caught early enough to get it all with just surgery. Higher stages, III and IV, often require more severe treatment, including radiation and chemotherapy. Your doctors should be able to advise you based on the stage of your disease and where it is located and if it has moved to other parts of your body.
As others have mentioned, you only get one chance to fight this disease, so using the best and strongest treatments is what I recommend. However, they should be appropriate for the level of your disease. Some of the treatments can be difficult to get through and have lasting side effects, but if you need them, use them, because it is a lot easier to live with the side effects than not have the treatments and have bigger cancer problems.
At any rate, welcome to the site and I will add you to my prayer list.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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