hello, everyone. i'm a 23 yr. old female who is recovering from tongue cancer. my doctors seemed to have done things backwards. i started out with external radiation from december to february. then i was to have brachytherapy in march. soon after, i was getting my symptoms back and what do ya know... i had to have 2/3 of my tongue removed along with the lymph nodes in my neck. it was an awful experience. i've been out of the hospital for 2 months now and am still in recovery. i'm not talking all that well or even that much. eating isn't very easy for me, which is bad cuz i've hit 100 lbs this past week. anyhow... i hope to start feeling better soon and i hope to meet the rest of you!
God Bless.

dear rugbykim717,

i'm sorry you've had this awful experience, but welcome! you're in a good place to get info, support and love.

since it might take you a while to recover from the surgery and be able to eat through the mouth normally, i wonder if you've discussed with your physician the option of getting a peg tube? it might help you maintain and/or gain weight. there were some recent discussions about this in the "currently in treatment" forum that you may want to check out if you haven't already.

i too hope you start feeling better soon.

good thoughts, healing and peace.

gita

Hi,rugbykim,

Welcome, I am glad you found us. It is terrible what you have to go through to qualify as one of us, but you'll find many wonderful people here, and you will be able to find answers to most of your questions (except "why me?").

Love, Leena

Hi Rubykim. Sorry you found yourself at a place in life where you would want to be part of a forum like this, but I'm glad you found us. The disease and treatment you've endured is a very rough road to travel. It takes some time to heal, so go very easy on yourself. Get lots of rest and keep consuming those calories! Hang in there...

-Brett

Hi Rugbykim, so sorry you are going thru this ordeal, oh my gosh, you are so young. My thoughts and prayers are with you. I live in Maryland, my daughter plays soccer for FC Delco in PA, they are in Downingtown, is that anywhere near you? I had tongue surgery, radical neck dissection and radiation two years ago in May. Am grateful to be here,I learned early on to take it one day at a time, it does get better. I lost about 30 lbs but have regained it all and some, SMILE!! Love, Carol

Rugbykim,

I am really sorry you have had to go through all you have. It is good to have you here. Many have traveled the road you are on and if you have any questions I am sure someone can address them. I am hoping and praying for continued healing, comfort and peace for you.

Ed

I am curious if you were treated in a hospital setting (if so which one) or in a series of private practices. Would you care to elaborate?

Welcome! I wish you didn't have to be here, but glad you found us. Continue to be strong & you will get better. Don't give up. Keep fighting. Believe in yourself. Erik

RubyKim Hi,
Glad you found us, we are always here for each other and everyone is welcome, it may pay you to run some searches on this site, then when better equipped go back and ask some more questions of your docs.. I wish you well... I'm due to lose some of my tongue within the next few weeks but they are performing a graft from my forearm to to replace the lost section...
sunshine... love and hugs
Helen

Thank you, everyone for the warm welcome. It's unfortunate to meet everyone like this, but still, it is wonderful to meet such compassionate people.

I also wanted to go into more detail about my cancer so maybe it can help someone else. Sorry if this is a little long...

I started to have an ulcer on the right side of my tongue around October 2003. I never thought much of it, I was too busy trying to graduate from West Virginia University. After a while, it really started to bother me so I went to the University hospital (dumb mistake). They said it was an ulcer, not to worry, and gave me some kind of orajel crap. So I let it go for another month because I didn't know any better to be scared. Soon, the right side of my tongue was swollen with a lump and it was hard to eat on that side and sometimes hard to speak. So, around Thanksgiving I was in so much pain, I made an appointment with my family doctor. She didn't really know what it was so she referred me to an oral surgeon, just in case. Still, at this time, I never thought it to be cancer. I didn't even think cancer was an option, to be honest. Anyhow, I went to the oral surgeon and by the look on his face, I knew something was wrong. I teared up even before he said I needed a biopsy. So he took a biopsy there and said it would be 5 days until he would find out my results. After that painful experience, the man forgot to give me painkillers for my tongue so my mom called him. The scary thing was that he told her he had a feeling it was cancer, but he never told me that. So, 5 days pass and I get a call from no one other than my mother telling me that the doctor called her to tell her I have cancer. I was furious. I was angry because of the whole cancer situation and even more angry that the doctor called my mom and not me. I am an adult and I had a right to hear it from him. I'm still angry with him today. That was Friday, December 5. I will never forget that date because it was my best friend's birthday and it was 2 days before my college graduation. That whole next week, which was my college's finals week, I travelled to University of Pittsburgh Medical Center. (WVU was wonderful for waiving all of my finals.) We had to rush things because I was going to be kicked off my parents' insurance because A). I was graduating and B). I was turning 23 on December 22nd.
Insurance was also a problem because I had to have a catscan done at Canonsburg General Hospital because UPMC wasn't covered. Our health insurance also refused a pet-scan even though all three doctors appealed their decision. The insurance company said that a cat-scan was enough proof and that the pet-scan was only viewed as experimental. Sadly, the insurance company was way wrong because the tumor, when felt by DR.C, was practically the whole right side of my tongue, was only showing up as 9 mm. That's a major difference, but they still would not approve it.
The whole process was a mess because my main doctor, DR.J, was at UPMC and he was the one to recommend radiation along with brachytherapy. He wouldn't be doing them, but another professional in the same hospital would, DR.C. But of course, health insurance is a pain and they would not pay for my radiation to be done at UPMC. DR.C was under their coverage, but the hospital was not. So I was referred to Allegheny General Hospital. That doctor, Dr. T, was my favorite of the three, maybe because he had some personality and I saw some compassion in his soul. The other two doctors were more straight-laced and professional-based. I had 29 IMRT radiation treatments and yes, I was always the youngest one there. The other patients were so nice, though. And sadly, they all seemed to be in worse pain than me. Seeing the others really made me take pity off of myself and caused me to pray hard for them. I finished February 11th and was making my way towards brachytherapy. All three of the doctors sent a letter of appeal so that I could have the brachy done at UPMC and it worked. Brachy was done on March 1 and I was out by March 8. Dr. C was the one that did the brachy and Dr. J did my tracheostomy.
Even though I was in pain, I still found a way to get my butt out and take a road trip to play in a rugby tournament in Savannah, Georgia. I played every minute of every game. I wasn't quite as good as I used to be, but I was 30 lbs. lighter and just out of surgery. I still had my trach hole, for goodness sake!! lol.

Soon, I started to feel the symptoms again. I had pain in my tongue and it ran straight into my ear. I would go around all day popping my pain meds every hour I could and holding the right side of my face in pain. It was awful. I had a follow-up and Dr.C said everything was fine, but I was so sore that he couldn't get a great look at me. I knew the cancer wasn't gone. Believe people when they say that they know their own bodies!! About a month later, my pain got worse and I noticed that the right side of my tongue looked as if something was eating away at it. My mom even noticed that my breath was smelling a little foul. Plus, my right tonsil was in a lot of pain. We called Dr. C and his evil, and yes, I do mean evil, nurse told my mom not to worry, that I was fine, and it was "normal". Two days later, we went to the emergency room because none of my doctors were in, and the ENT specialist said I needed another biopsy. Right then and there, I broke down cuz I knew the cancer was back. We went to see Dr. C the following week and the evil nurse kind of scolded my mom for not listening to her and for taking me to the emergency room. Too bad she wasn't there when Dr. C looked in my mouth and left the room to schedule me another biopsy with Dr. J's partner, the wonderful Dr. M. We saw Dr. M and even before the biopsy, he said he needed to remove that part of my tongue. He ordered a cat-scan and even had a pet-scan approved at West-Penn Hospital. I met with Dr. M again and that's when he gave the bad news that I would neeed 2/3 of my tongue removed. He said he was sure I would be able to eat and swallow like normal after recovery and my speech would get better with therapy.
My surgery was May 5 (cinco de mayo!) My surgery took about 12 hrs. It took so long because Dr. M was trying to save as much tongue as possible, so he would cut a little and then do a biopsy. It also took long because a plastic surgeon was in to take the skin off my forearm and create a flap for the empty space of my tongue. I should've only been in the hospital for 10 days, but I got huge infection and I was stuck in the hospital for 3 weeks. That can drive a person mad! I won't lie, so yes, it was painful. It wasn't so much that my tongue was in pain, but my neck was in pain from them removing my lymph nodes.
I am still in a little pain today, mainly my neck. I still see Dr. M every 2-3 weeks. He is such a wonderful doctor. I am lucky to have found a doctor that can be both extremely professional and straight-to-the-point, yet absolutely caring. Sometimes I think that it is God's plan for me to have dealt with this cancer now at this age because the timing seems right. I mean, I just graduated from WVU and I didn't really have a plan after graduation except for maybe grad school. And also, I have my wonderful parents here to care for and support me. As frustrating as it is, I try to see things in a more positive way.

Sorry this was so long. I just wanted to get a little more info out there. Thank you, everyone!

you've got some story here! you're amazing to have gone through all of this AND graduated AND played rugby meanwhile! and you are such a wise person for taking things with such a great attitude! and it is great that you and your parents have been so vigilant about your symptoms. i am in total agreement with what you said about people knowing their own body best. my sister knew of her recurrence way before her doctor finally decided to do a biopsy. so stay alert to what's happening in and around you.

i'm wondering what, if anything, is next in your treatment plan?

be well.

Kim,
I so enjoyed reading your story (although I hate the fact that you had to go through such an ordeal). I don't know what your major was, but you are a great writer and storyteller.Perhaps, that is where your future lies. It sounds like you have handled everything with such patience, grace, and a wonderful attitude. I am sorry that this would happen to anyone, but especially someone so young as yourself. You are wise beyond your years. Stay well.

Danny G.

Dear Rugbykim717, Let me add my welcome. Also, sorry you need to even know this site exists. It sounds like you have been through the mill. Hopefully, this last round of treatments will have gotten it all. Can't give you much help at this point other than to pray for your recovery and total cure of the cancer. I had similar treatment except for the tongue as you, as we all have, so we all have empathy for your situation. I had my neck dissection the day before you had yours, on May 4, so we do have some in common. Hang in there and the healing process will get going and things will improve. Just for my curiosity, were any of the hospitals you were treated at cancer centers? They generally do a better job and are much more compassionate about this disease than regular medical facilities.

Kim,

My, what a story. I am really sorry you have had to go through so much. I get so angry when I hear about insurance companies determining the care we need. I have a few of those stories but none of my angst was created by the insurance companies. My first insurance company (you can call it insurance company "A" since you like the alphabet game ) even assigned a patient advocate to me to ask any questions about treatment, cancer, issues in the family, etc. since I was dealing with cancer. She didn't answer questions very fast and I am not sure how thorough her research abilities were but I still thought it was a great concept.

I hope you are well on your way to recovering from the treatment and surgeries. I pray for His grace, peace and continued healing for you. May your blessings be many!

My brother's birthday is May 5 and at 51 I asked him if he knew what Cinco de Mayo was and he didn't. I just assumed everybody did.

Great to have you here.

Ed

Dear Kim,

I'm so sorry to hear what you've had to go through, especially at 23 years of age. Welcome to this site -- as you've already discovered, there are tremendous resources here, and lots of people who can relate to at least some of the aspects of your experience.

I hope your course of treatment will knock out the cancer for good. Please stay in touch and let us know how you're progressing.

Cathy

Dear Kim..with your personality and determination
you are going to give this disease a good old fashioned ....ass whoopin'.... Rugby no less ! ...bless you..
Marica

Kim,

Wow! You, like all of us, are an amazing person. I've decided that this club of ours simply requires an extremely nasty initiation.

The rest of our members are a very caring and wonderful bunch. To the extent you need to utilize us for knowledge or support, we will be there for you.

Sabrina

Hey RugbyKim:
You are right between my boys in age. It has been a very hard road with my husband having tongue cancer and neck tumor. I cannot imagine my boys getting it as young as you are. I am amazed at your stamina playing rugby in the middle of all of this. I will be praying for you and your family as you recover. My God bless you!
Debbie

Rugby Kim,
Quite an ordeal! I read your story word for word and it was gripping . (I had thought I was young dealing with this stuff having started at age 34.) We have in common the fact that you had just finished school when you were diagnosed. I had also just finished school, started a new job, and bought my first house. I have Laryngeal ca but can still relate to many of the things you have just gone thru. I am 41 now.

You have a beautiful attitude.

It makes me very angry to think of the doctor calling your parents first. That's kind of like getting an additional slap in the face. I mean, I love my parents dearly but I was very happy to exercise my right to understand what it meant for me to have this situation before breaking the news to them . Clearly that was an invasion of your privacy. I only hope that it hasn't caused any animosity between you and your mom since it was the doctor who messed up. It is wonderful that your parents are there to support you. You may find yourself falling into different roles with your family. Even though this is ultimately your own individual experience I hope that you do not find yourself feeling alone. As you are finding out this site here can be a great source of information and moral support. I believe that one of the gifts that this disease has supplied for me (there's a few ) is the opportunity to get very close with my family. You have experienced allot in a short amount of time and the strength that you have gained from this experience will prove to be invaluable to you as you move forward day by day.

I find that my life is sweeter now, even vivified. I also appreciate just about everything most of the time. Yes, ...even the pain I sometimes have because that means I'm still alive. It also means that I can still be here for my 17yr old daughter.

I will be holding you up in prayer daily!
Much Love, Light, Laughter, and Healing,
Candle

Kim,

I forgot to mention that even though your doctor was wrong telling your mother and not you, it is understandable since your mother called the doctor to ask about pain pills. Technically, the doctor broke our new laws (HIPA) by discussing your case with anyone other than who you specifically indicated in writing on the HIPA forms. If you put her on the forms as being okay to discuss your medical information, the doctor only showed poor judgement. Did you mother already know this doctor?

Anyway, I hope your day is all you want it to be!

Ed