Topic: Semi-newly diagnosed :D

Hi guys! I'm so happy to have stumbled upon this message board, I had no idea there were so many people with this like me.

Where to start? I'm Katie, and I just turned nineteen last month. After having severe pain and shortness of breath at work, I'd just assumed I'd pulled a muscle. (ShopRite sales are wicked, haha) I went to my doctor, then to the ER where I had a CAT scan. Told me I had a mass on my liver, but I'd be able to live with it if I didn't want to have it removed. I scheduled an appointment with my mom's surgeon anyway because mass = bad news to me.

The day of the appointment I threw up bile everywhere and was admitted to the hospital finally. The night I was admitted, I had an MRI (those things are scary!! haha) which eventually showed that the mass was a tumor, and it was very involved with my liver. My surgeon was too afraid to operate, so he suggested I go to Sloan Kettering, since they had much more experience with this sort of thing. The symptoms subsided after they put me on antibiotics via IV.

Since I was stable, it wasn't a hospital to hospital transfer. So I did the whole pre-admission stuff and then got admitted. So about three weeks ago, I had my liver resection done at Memorial Sloan Kettering, in NYC and stayed a week (including my birthday, but the nurses brought me balloons! how sweet of them). At the time they thought the tumor was benign, just a hepatocellular carcinoma or something. I have to take birth control for my PCOS, so they thought that's what caused it. About a week after I was released from the hospital, my surgeon called with the bad news. Being parents, my parents bugged out, but something told me the night before it would turn out to be this way, so I'd accepted the news on my own terms. They caught the cancer very early so I'm lucky to even be here! I always remind them of that when they get all mopey.

Apparently the tumor was the size of a softball (reminds me of when I was a kid and failed at softball, got hit with those in the face a lot) and he'd caught it when I was in stage 2 of the cancer. At any rate, I should be starting my chemotherapy via IV this Friday. He says the chemo is just a precaution in case they missed little cells or something, but it's 3 times a month for 6 months. That seems sort of aggressive doesn't it? This whole ordeal has just been really... different? Scary? for me and I just hope it helps me to become a better person once it's done with. It's nice to meet everyone! smile

- Katie smile

Once you choose hope, anything's possible!

2 (edited by marions Wed, 04 Mar 2009 11:06:00)

Re: Semi-newly diagnosed :D

Hi derkuchen....so glad that you have found us.  By the way, how did you come up with the  name?  The Cake? 
There is much good news in your posting.  You are young and the cancer had been caught early.  Sounds as if you have rebound well from the surgery, also.  What type of chemotherapy has been recommended to  you? 
And back at you:  It is nice meeting you.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Semi-newly diagnosed :D

Well my dad's uncle (he passed from cancer a few months ago) always taken pride in us being German, so I looked up some vocabulary. Since I like to bake, "the cake" stuck and that's been my username for a couple sites I go on. big_smile

According to the papers I got today, I'm supposed to get.. Gemzar? Gemcitabine? Lol sorry, new to all these terms. I'm supposed to get that intravenously for about 6 months (3 weeks on, 1 week off).

And I'm trying to not be a wimp after this surgery! It's not my first but surely the most major one yet. I'm raring to go back to work already since I'm on medical leave from school with nothing else to do.

- Katie smile

Once you choose hope, anything's possible!

Re: Semi-newly diagnosed :D

Hi Katie & happy late birthday! I'm glad you found this crew, make sure to come back & keep us posted on your progress. You have a great spirit & sense of humor! You've endured so much for your age &  the strength you've found to do it has already made you a better person.  Keep growing strong & healthy- you're in our thoughts.

-Tess

Re: Semi-newly diagnosed :D

Thanks so much Tess! I feel a lot better now, after spending 7 or so hours in the hospital today.. I'll definitely stick around and update you guys. I hope I learn enough so I can help other people too! smile

- Katie

- Katie smile

Once you choose hope, anything's possible!

Re: Semi-newly diagnosed :D

Hi Katie,
I wanted to welcome you and say wow, you have a great attitude! You have every reason to be positive, as you're young and only stage 2 and were able to have resection - that's really great news. Gemzar and Gemcitabine are different names for the same thing, pretty much, and the pretty standard treatment for this. Of course they're going to be extra aggressive treating you, just to be on the safe side, and they figure you're young enough to take it.

I wish you all the luck in the world - keep smiling!

Joyce M

Re: Semi-newly diagnosed :D

Dear Katie:

Welcome! You will find lots of wonderful friends in this discussion group. Sounds like you are getting excellent treatment. Liver resection plus gemicitabine chemotherapy is very aggressive, but that is the one-two cholangio punch that can help keep this disease at bay.

Keep your chin up; you have  great attitude!

Violarob in Texas

Re: Semi-newly diagnosed :D

Hi Katie,
Glad you found this site.  You got great attitude, spunk, and energy, all the things you need to kick this cancer to the curb!!! I am very certain you will do a lot to help others on this site, by virtue of your attitude, and this site will give you strength as it has done for all of us.
In my fathers case, Gemzar was a peice of cake.
BTW, Happy Belated B-day!!
Peace
Barbara

The  Lord is my shephard

Re: Semi-newly diagnosed :D

Hi Katie, little wise one! Welcome to the best little club in the world that no one wishes to join. You are our youngest ever so don't be alarmed if we refer to you as our "baby". You sound like a person we would all love to know. You have a great attitude and we look forward to many wonderful posts from you. This board goes beyond extreme with the most caring, courageous people in the world. Feel free to ask, advise or vent. Again welcome and hope you will drop by often!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Semi-newly diagnosed :D

Hi Katie,

I will join all the rest & welcome you with open arms. You are the youngest on the site, but also one of the bravest & with the best attitude, which is so important. Keep posting & updating us on how you are doing. I will be hoping for the best for you. You have so much in your favor. I also want to wish you a happy belated birthday.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Semi-newly diagnosed :D

Hello Katie,

Welcome to the site! I found it just a short while ago and it has been a Godsend. People here are so helpful and understanding. Lately I've found it difficult to keep up with everything though. I have to say I was very surprised to see how young you are! You are so brave. My father is the one with cc and I find it difficult to brave for him some days. But you seem to be an exceptional case. I am so happy to see that they caught it early and you found a surgeon who was capable of removing the tumor. I am glad they are taking the aggressive route in making sure you are as healthy as you can be! And your positive attitude is going to help keep that cancer away!

Hugs,

Ashlea

12 (edited by duke0929 Wed, 04 Mar 2009 14:51:59)

Re: Semi-newly diagnosed :D

hi and welcome katie...love your attitude...keep it up...my wife was on the same schedule as you and she handled it very well as im sure you will to...best of luck from fellow new jersey family...ron

Re: Semi-newly diagnosed :D

You guys are all so nice! I feel special. big_smile Thank you so much everyone for the warm welcome and the birthday wishes. I'm doing my best to stay positive and active; I have so much left to do, I can't stop yet! And I'll beat it for everybody else who couldn't. I was wondering, is there an awareness ribbon for CC?

It does seem odd for my age, my surgeon told me he really couldn't tell me why I had this since normally older people have it. My mom was joking with me (at least I think she was joking) that I was gonna be in the American Journal of Medicine for it, lol. I was like, "Err, maybe not." Either way, I hope I can kick it's butt. Thank you all for the support again, I'll be certain to be around!

- Katie smile

Once you choose hope, anything's possible!

Re: Semi-newly diagnosed :D

Katie,

They do have a bracelet, however, right now I think they are waiting for new ones. I believe it will be posted on the site when they get them & they can be ordered.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Semi-newly diagnosed :D

Welcome Katie - so glad you found us - even under these circumstances.   I have found so much friendship, research, comfort on this site!  My dad had CC, and went through the same chemo regime as you will.  Good luck and keep that perky attitude!!  Keep us up to date with what is going on!!

Smiles through tears,
Patsy

Re: Semi-newly diagnosed :D

Katie,
   Welcome to our site - lots and lots of lovely,  brave, smart people here to talk with youwhenever you need - or just want - to. You DO have a good attitude, and I love hearing that you were stage 11 at your resection - sounds very promising. Best of luck to you with your chemo.

Joyce C.

Re: Semi-newly diagnosed :D

Welcome to our wonderful family. Please let us know how that chemo goes. I will keep my fingers crossed for you. I am so happy they caught it early and were able to remove it.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Semi-newly diagnosed :D

I'm so glad you found this site.  I found it to be very supportive.  Feels like hands across the miles (is that a song lyric?)  Whenever I sign in and read, it feels like friends huddling close by.  They are not offended if you stay quiet or talk your head off.   I'm sure a lot of them are mentally putting their arms around you.  You are never alone.  Your posts brings  levity and laughter at a time when we all need it.  Thank you.

Re: Semi-newly diagnosed :D

Katie,

You are much too young to be stuck with this cancer. We aren't a group that goes looking for new members, in fact we'd love it if modern medicine could make us obsolete but we welcome you as our own special poster kiddo Katie.

Patty

Re: Semi-newly diagnosed :D

Hi --
I agree -- MUCH MUCH too young to be hit with this.

I an interested that you mentioned PCOS -- that has been a problem of mine for many years, and i absolutely think that there is a connection between the two.


As many others have said, attitude does make a huge difference -- take control as long as you can.

Courage,
Irene

Re: Semi-newly diagnosed :D

Hi Katie,

WOuld you mind letting me know what PCOS is?  I am so sorry you have been diagnosed with cc.  You are only a kid and seems so unfair.  If anyone can beat it it is you.  Have a nice day.    Hollie

Re: Semi-newly diagnosed :D

Thank you so much everyone! You're all such nice people big_smile <3

PCOS (polycystic ovarian syndrome) is an endocrine disorder that like, 10% of all women have. It's a leading cause of infertility and it effects hormones in the body, so people who have it produce more testosterone than estrogen and it makes a whole mess of problems. sad

- Katie smile

Once you choose hope, anything's possible!

Re: Semi-newly diagnosed :D

Hi there just another welcome.I have kids around your age(sons)and I empathise with you and your parents too
               Janet