I've read through a lot of your threads and responded to a couple today. It seems only fair that I explain my situation, too.

I'm a 26 year old female who has never smoked, drank in moderation, never tried drugs, stayed fit, yadda yadda yadda. Lot of good that did me, huh?

11/03 I started biting my tongue at night, or so I thought. My teeth are sharp, so I asked the dentist to file down my teeth in 1/04. That helped for 2 weeks and I wanted to return. He suggested either a nightguard or an oral surgeon. I tried the drugstore nightguard for 4 nights and it just became worse. I went to oral surgeon who said "Oh! Just a simple ulcer. Nothing to worry about. We send the sample off to the lab, just as procedure. See you next week for your stitch removal".

Surprise! Somehow I've been graced with an "older person's cancer, most commonly found in heavy smokers and drinkers." Yeah, right. I used to pray daily to hit the lottery. Someone misunderstood which one I meant. I've changed that prayer.

I smile at many of the questions or reactions I read about here. Someone must hop the "emotional reaction to cancer brain" from person to person. It sounds like we've all shared it.

My cancer was Stage II SCC in the mid-left tongue. I had a subsequent surgery to obtain a 1cm cleam margin on 3/25/04. Tomorrow I start week 3 of radiation, and the side effects they promised wouldn't hit until now hit on day 2 and 5. After radiation, I go into the hospital for bracheytherapy. For those of you unfamiliar, they place mini-glass tubes into the underside of my jaw and stick radiation seeds through them into my tongue. Believe me - I've spoken to enough people to understand this sounds much worse than it really is.

The majority of my fears, tears and questions have stabalized. The remaining issue (besides physical appearance - come on, I now lisp and have radiation burns on my face. Every 26 year-old is jealous of me), is being so young for this type of cancer. I'm in a Young Adult Cancer Support Group, but it just doesn't seem quite right. You still feel a little bit different than them.

I would be so happy to find even one other young woman going through, about to go through, or having gone through what I did (surgery, radiation, the works). This disease is becoming more and more prevalent in younger people, so I know more of me exist. If anyone like me is out there, especially in my area, it would mean the world to me to find you.

Sabrina

Hi Sabrina, Thanks for sharing your story. Oh my gosh, you are young to be going thru this ordeal. I was diagnosed at 44, I am almost two years out and am so grateful to be alive. I too, went through the filing of the teeth, etc, as the sore grew, even had a biopsy in April that came back as NOT cancer, lo and behold in May, I had another Oral Surgeon look at me and tell me it was squamous cell carcinoma, mine went into two lymph nodes,had seven weeks of radiation. The staged mine as IV due to the lymph node involvement. I will be praying for you, God Bless, Carol

Sabrina,

I'm not sure why I am putting myself through this question but....Did your doctor recommend radiation even though you didn't have any positive lymph nodes? My sister Marcy was only a stage II also and she had one positve node and they did not recommend radiation..I wish I could turn back time..
Michelle

I met with three different groups - Dana Farber, Mass Eye & Ear / Mass General, and South Shore Hopsital. At the first two, you are presented to a roomful of doctors, med students, fellows, etc. They each participate in the examination of you, and go into a conference room to review your historty (MRI, CT, bloodwork, etc.). They then present you with all the arguments. All three places recommended radiation (MEE just wanted radiation). Dana also wanted me to do chemo, bracheytherapy, and possibly neck dissection (depending on my CT). I opted out of chemo, and they didn't feel a neck dissection was necessary. I should note that each place said the biggest argument was how to handle my neck.

A Stage II tumor, placed in the mid-portion of your tongue, apparently has a (apx) 20-40% chance of having spread to your neck. The further forward the tumor, the chances go down, and visa versa.

Therefore, while they're sure they removed all the cancer in the tongue, they are being "extra careful". I am receiving radiation to the neck and both sides of the jaw in addition to bracheytherapy. My tumor turned out abnormal as it mixed together with normal tissue.

I could have had just radiation or just surgery. Once I made the decision, I had to accept the consequences. No matter how much you want to turn back time, you should not look back on your decisions. There's simply no way of knowing the perfect answer for any situation. Even with the decisions you and Marcy made, it's quite possible the choices would still have intersected down the line.

The "what if's" will make anyone go mad. It such a cliche now, but I honestly believe everything happens for a reason. You may not see it now, or ever, but something positive comes out of every negative. You're here now speaking for Marcy, and many people have undoubtedly pulled from the strength both of you exhibited through everything. And I'm positive there's even more goodness that you've both given.

Sabrina

Hi Sabrina!

First, I am not female and I am 48 (as of April 7). I want you to know how sorry I am that you had to join this club. We have all been through a lot and I know there are ways many of us can help you. For instance, I was blessed with skin as soft as a baby's butt. I am half Japanese and all my life everyone has always commented about my skin. Even the radiation oncologist staff were in awe how my skin recovered from the radiation burns. There was a point about half way through my treatment that my neck turned to a bloody, oozing mess. I managed to nurse it back and today I only have a brown overtone across my jaw and half of my neck. I can't really bond with you and share tender moments from a woman's perspective, but I could offer a few tips on keeping the skin soft and supple. If you have any questions or even just want to bounce something off of someone, feel free to private message me or post and you will receive a plethora of answers to any questions you may have.

I wish you the best and I admire your strength already!

God Bless.

Ed

Hey Sabrina,
I just wanted to add that it is so good that you are doing radiation as part of the therapy. My husband had Stage 2/3 tongue SCC and they did modified neck dissections and found no cancer, so said radiation not necessary. We never had anyone say it might be a good idea...never mentioned it. Not even 4 months later, he developed a massive neck tumor and is just now 7 weeks post treatment of chemo/rad. We were just at a oral surgeon at the time who did the surgeries. When he couldn't get all the neck tumor, we were referred to the U of MD and they had a tumor board. We feel like we have gotton the best care possible there and only wish we had known enough to get to a cancer facility right after diagnosis...you live and learn!!

Take care and God bless. Have a great support system in place has helped us get through this...hope you have one, too!

Debbie

Excuse me but I am so damn MAD!!!!!
I wish we would have gone somewhere besides the Marshfield Clinic. Two doctors told us radiation wasn't necessary, but I believe with Marcy only being 31 they should have been extra careful with her too!!
I am glad that you got more opinions and are getting radiation.
They told Marcy to get radiation 4 months after her surgery when the tumors in her neck were too huge to do anything else.
I am trying to move on some, but then I can't help but think the doctors were wrong so many times in Marcy's case. After her Radical neck dissection she went to the doctor numerous times complaining of headaches, never once did they give her a cervical xray, they told her it was stress and related to surgery. Three months later they told her it was on her spine and her skull! My poor little sister. She tried so hard, she should have been able to stay.
I sincerely wish you the best and with all the treatment you are getting you are bound to kick that cancer's a--!!!!!!!!!!!!!!!!!!!!!!!

Michelle

Welcome, Sabrina. Although I am not in your age group either, I want to put my two cents in to say that it sounds like you received very good advice. Radiation to both sides is so important because this cancer jumps sides with seeming impunity. I have very fair skin and burned quite a bit, but it healed quickly and unlike Ed, there was no color change. Also, I had rad all around and there was siginificant loss of hair at the back hairline, but that all grew back. This is to let you know that there is a good possibility you will emerge from all this unchanged in appearance. As you go through treatment, please do not hesitate to bring questions and concerns here, as there are so many of us who have been there before you. We can sometimes povide solutions and information you cannot get from the people treating you. Be strong, and you will get though this quickly. When I was about to begin rad, I decided that in the larger picture, a few weeks were a small price to pay for the rest of my life. Also, having read some pretty horrible stuff about rad and chemo, I was delighted to find that I had a comparatively easy time of it. I wish this for you, too.

Michelle,

I truly wish I could take away your anger. It definitely sounds like a different clinic would have provided different results. My groups all argued whether to do radiation in my neck.

The only words of comfort, if they are even that, is maybe Marcy's group didn't want to overtreat. For the sake of medical care, I can only pray the recommendations were based on "the patient's best interest", or so they thought. Mass Eye and Ear felt that Dana Farber's recommendations were over the top for someone so young. MEE didn't want to put a young person through such terrible treatment (surgery, possible neck dissection, radiation, chemo, bracheytherapy) and recommended only rads and brachey.

Marcy's medical team is now in my prayers, in hopes her situation will result in their pro-active roles in treating future patients. Hopefully they will now save more lives than if they never met Marcy.

I wish I could say or do more for you, Michelle. Though I don't truly know you, my honest feelings of love are being sent to you. Within the first five minutes of finding this site, I realized how amazing and wonderful everyone here is. Without hesitation, I know anyone here would do anything to make you feel better.

Sabrina

Sabrina,

I am 40 years old and had stage 3 tongue cancer. I have been battling dysplasia on my tongue since I was 25. About 7 biopsies in all before the dysplasia mutated into a malignant ulcer 12/02, six months later the reoccurrant cancer was at stage 3, no lymph node involvement, neck dissection, 85% of my tongue is gone and my left tonsil. I had a reconstruction from my thigh and still don't eat much. I have PEG tube that I use for nutrition. People keep telling me it will get better, but sometimes I wonder.

I hope you procedure was successful. Did they get good margins? The brachytheraphy is interesting. I've never heard it used for tongue cancer.

Anything else you'd like to know I'll be glad to talk anytime.

Hopeful!!
Lynn