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

Sabrina
One only knows how or why we are together in this club. I to was the most clean living eater, never smoked and in great shape from working out and I had stage 2 tonsil cancer. Luckily know nodes. I got 2 opinions from the best 2 cancer institutes near me an luckily they both said the same thing radiation. It was a tough process but now I am 7 weeks out from it and about 98% back to normal. I have some sensativity in the eating a few things and some reduced saliva but glad I did it to help ensure its gone. I hear to many stories of it coming back because the radiation was not done or done to late. Your on the right track, visually after the process and when your skin heals it will not show. Ask the Doctor and nutirsion person for help in pain and eating and you will make it fine.

Sabrina,

I am sure you have read and researched this site frontwards and backwards and kind of have a glimpse at most peoples situations and stories. My mom is 56 she has been battling various tongue and mouth ulcers for the past 10 years (never smoked, never drank heavily, very healthy active lifestyle) she had multiple surgeries and biopsies and they ranged from dysplacia to pre-squamous cell carcinoma until her biopsy in April 2003 came back invasive SCC. She had surgery removing 2/3 of her tongue and part of her soft palate Stage 1 and a radical neck dissection w/ no nodes positive so doctor said no radiation and chemo.

In November of 2003 the cancer reoccured on her gumline very close to where the original cancer was removed so another surgery and she had a skin graph from her leg and then 6 weeks of radiation and 2 chemo sessions. She is very fair skinned (English/German) blonde blue eyed and her skin got pretty burnt up but now just 7 weeks post radiation it has completely healed up and there is no discoloration whatsoever. She has some loose skin around the area where she had the neck dissection but that is probably due to her age. The radiation almost completely disolved the scar where she had her trach with her first surgery. She's thrilled with that! Looking at her (aside from being 5'8 and 125 pounds) she looks completely normal and can eat almost everything already. I also attribute her quick eating to her never having the PEG tube so she was forced to eat by mouth. I am sure you will heal up like a charm.

I am 34 and cannot even imagine battling this at your age. I know that if you check the profile for AzTarHeel (?).... he is about 32 and finished up with his treatment about 3 months ago and maybe send him a private message I think he's about the closest to your age that I've seen on the sight so far.

It sounds like you are in excellent hands and the doctors are doing everything they should. The side effects of the radiation will slowly go away and before long you will be back to your "New Normal". I know with my mom once she hit the three week mark for radiation it was a countdown from that point on. I truly wished that we could have fast forwared through the month of February but she made it through it and now she is about 75%.

My prayers are with you and your family and if you need anybody to talk to you can send me a private e-mail anytime. Everyday for the past year has been an emotional rollercoaster for me.....

Take Care,
Dani

Thanks everyone for your supportive stories and well wishes. My post surgery notes included:

"...They did find more cancer, which was removed. The cancer didn't invade things such as nerve endings. They also took 8 margin samples and only found "moderate dysplasia", which is not uncommon in any person. For example, a sample taken anywhere from a smoker's mouth would produce this from the chemicals inhaled. This means it's not a normal happy-go-lucky cell, but it's not cancerous either. Translation: we have clean margins!..."

Lynn, your comments on dysplasia concern me since this was included in my post-surgery follow-up. The doctor didn't seem worried about it, and I used his example in the quote above. Are there different types of dysplasia?

Regarding brachytherapy - I spoke to a woman with an identical situation to mine, except it occured a while back (years). She had the same "brachytherapy", but called it something else. It's curious how the name has evolved and why. I suppose that's a question for Dr. Busse tomorrow.

John and Dani - the doctors told me I'd "recover" two weeks after radiation stopped. After reading some of the discussion board comments, and speaking to my social worker, it appears the recovery is more like 4 weeks. What are your (or anyone's) thoughts on how I'll feel post week 1, 2, 3 and 4 (pretending I don't have brachey messing things up)?

Sabrina

Sabrina,

I felt great 2 weeks after radiation (9 weeks) and went back to work and was eating fried chicken! About 8 weeks after that the defecation hit the rotary oscillator! I got so fatigued and started losing weight even though I was eating and doing light excercise. It lasted about 10 weeks and I am fine again. I have just about the same energy level as before radiation/chemo and could probably ride the bike 10+ miles a day right now.

Ed

Sabrina,

My mom started to feel like a human again after 2 weeks. The last week of radiation and the first week after were definately the toughest to endure but after two weeks she started to seem like her old self. Keep in mind you have your age on your side so you will probably recooperate much quicker. My mom was still walking on the beach daily (she lives in Malibu) and trying to do as much as she possibly could all through radiation. She never missed a radiation session and had two chemo sessions even when the darn machine broke down she would wait until they would fix it. Her doctor took her off work until June because he wants to her to be able to heal and feel somewhat normal and as some people say going back prematurely its hard to get off work again and reopen your disability claim. She doesn't have nearly as much energy as she used too but slowly that too is coming back. My mom still can't put on weight no matter what she eats so with time I'm sure that will happen too. She wants to gain about 10 pounds she hasn't been thin since she was in highschool. Now my mom is hiking 3 miles a day and she also has a 13 year old son that she has to spend lots of time with. She has no problem taking care of my 7 month old baby girl either so its really not that bad. She has her old smile and laugh back too and funny thing after radiation her speech seems better than before.

I also have concerns with Lynn's comments on dysplacia as my mom has been battling some form of that for almost 10 years....

I'm sure you will have a very speedy recovery. My moms mouth was so torn up after the second week that she never thought she would make it through it but she did and looking back now it was just a short time of discomfort. Make sure you use the pain meds they really helped her through it. She was up to four patches at one time and weened herself off of them by 4 weeks post radiation.

You will be in my prayers.
Take Care,
Dani

Dani,

I am glad to hear your mom is re-establishing her "new normal" and doing so well. I can visualize her big smile as she takes her walk along the beach. I can imagine it is early in the morning when the day begins as she marvels at her appreciation of each new day dawning. (sigh) Even seeing the sun rising each day is a spectacular sight for me...I just need a beach!

Ed

Ed

Ed,

Its so funny that you say its in the morning because she takes my little brother to school and drops him off then walks for 3 miles along Zuma Beach and she is not a morning person especially since radiation. She would usually sleep until 10am if it wasn't for my brother Zachary. He keeps her pretty busy. He hates homework and his teachers keep telling my mom that he is not applying himself. He loves video games so she has to keep getting on his case to get out into the sunshine and to concentrate on schoolwork.

I always remind her thats what she gets for calling me up when I turned 21 and telling me that she was not married and she was pregnant.... I told her I should be calling her and telling her that not the reverse. Shes now 56 (still hasn't married Zachary's father but they live together and he has been awesome throughout everything my mom has gone through)with a 13 year old and that takes a lot of her energy away...

Well I really got off the subject. Sorry....I would love to meet you one day Ed. Your life stories are so very interesting. You must have been out of control!

Take Care,
Dani

Shhhhh...don't tell anyone! I did go through a rough early adulthood. I remember coming home one day and my mother had moved out. I plunged into retreat, got into the drug scene and bailed out of society. My parents argued a lot over who I should live with and I just kept running away until they stopped looking for me. I have pretty much been on my own since around 15-16 and I certainly learned from the school of hard knocks. It took a few significant events to get me back on track. I have no regrets other than not taking my mother back to Japan when she was alive. I had an enormous feeling of guilt when the plane landed and I had her tucked under my arm in an urn. I was quite ashamed to realize I had made plenty of money and could have easily afforded to take her to Japan once a year for the past 15 years but my selfishness didn't allow it. When she was diagnosed terminal in March of 2000 I pretty much put my life on hold and took care of her 24-7. It was very stressful but I could not see putting her in a nursing home. She had multiple brain mets and was riddled with mets from ovarian cancer. Her 4 weeks lasted for 9 months and I still haven't found a regular job.

Ed

Thanks for the words of support. I don't know if it's the new "diet" the nutritionist put me on, the IB Proffin, or "talking" to everyone here, but I feel awesome! My mouth continues to fall apart, but the rest of my problems seemed to reverse this week. Strange? The rash retreated from my neck, and is now only on my face. The dry spots aren't as bad. My energy level is up (work out 2 days this week! - a big difference from crying to walk to the bathroom).

You guys have cheered me up so much this week. I have a BIG feeling it has to do with that. SO thanks for everything (again).

And Ed - you sound like a person with some amazing experiences. I'm so glad you put your life back on track and are helping so many different people.

Dani - If your mom ever needs a roomate in Malibu, it would be difficult decision, but I might be swayed to move there.

<written from the record hitting town of Boston. Coldest winter and rainiest April EVER.>

Sabrina

Sabrina