I just finished my journey

December 12, 2011 by  
Filed under Survivor Stories

Hi everyone, I’m Christina and I am 18 and I was diagnosed with synovial sarcoma in my right thigh, in June 2011. Two years before June 2011 I went to the doctors and they diagnosed my “lump” in my leg as something else, they told me not to worry about it. So therefore I did not. Then in April 2011 my thigh started hurting again and the lump seemed to be come larger then before. I begged my mom and dad to take me to the doctors again to figure out what was wrong with my thigh. As parents they did not want to believe that there could in fact be something wrong with me. They kept on pushing it off the doctors appointment that is. Once my mom did call the doctors office did not want to see me because my case was “closed” as they put it. In May I finally saw doctor lets call him “Dr.N”, he ordered a contrast MRI of the site and told us that we would go from there. I personally had a phobia of needles and blood but all of that changed while going through my cancer treatments. Once my MRI came back Dr.N told us to go to an oncologist. Luckily my dad works for Jefferson University Hospital, we went to we will call him “Dr.A”. He told my mom, dad, and myself that I would need a biopsy of my right thigh at the site. At this point I was terrified. I could not believe that there was a chance I could have cancer. I had my biopsy done a week after, two days before my 18th birthday. As a graduation present my parents sent me and my 21 year old brother to Disney World. While there I tried to take the thought out of my head that I actually could have cancer I just could not grasp the situation. After I got back from Disney I saw Dr.A and I remember sitting in the exam room with my parents telling them I had a horrible feeling in my stomach. Somehow in my gut I knew I had cancer. The doctor came in looking very serious and sad. He finally said the words you have synovial sarcoma. At that very moment my life changed forever, I just remember crying and crying. I could not contain myself the feelings I had coming from my brain and body were unreal to me. My mom looked at me and told me “it would be alright” and I replied “you dont know that”. The doctor then went through what my treatment process would be. I would have four sessions of chemo each session a week long, along with chemo six weeks of radiation, then finally surgery. To be honest I do not remember the fine details of the appointment. All I do remember is walking out into the street and seeing the world in a different view, things were running through my head “would i die?” “how am I going to handle loosing my hair” “will my friends support me” “What about college” etc. I can answer all the questions above. I did survive cancer, I lost all my hair and have a beautiful human hair wig, I lost many friends but learned who my true ones were, and I am starting college January 2012. I started chemo on June 20th the Monday right after my high school graduation while my friends were at senior week drinking away and having an amazing time. I had a double port placed in my chest the first day of chemo. Lets just say my needle phobia is no longer around. I was very lucky with my chemo I did not get sick, nor did I loose weight. The only thing which did happen was I lost my hair. Loosing my hair was the most terrible thing which could have happened to me. But now i realize that it is growing back and it will be long again in no time. My friend which I lost were scared to see a person go through one of the most scariest things a person can go through. My last chemo was in August 2011 while my friends were going to college. The last chemo was the worst, since I should have been going off to college. To those who are scared about going through Chemo, I am not going to sugar coat it, it is a very scary thing to go through but having a good attitude while having treatments helps the process 150%. I realized while going through chemo that I could not cry anymore because crying could not change the fact that I had cancer. Yes, I did let out cries sometimes, because crying is a good therapeutic technique. Once my friends left for college i became overly depressed, I started seeing a therapist who is wonderful and helped me deal with everything which I went through. I started radiation in mid September 2011. Radiation was actually very fun. The techs which were at the center were always fun and friendly and made me feel comfortable. The only effects I had from radiation were redness at the site and it made me tired. After radiation was surgery the last step to my treatment. Again my parents sent me and my brother to Disney World. There at Disney it was nice to feel normal, and realize life was getting back to normal. However, there at disney i ruined my wig because of the water and humidity! I was in a state of panic. So there at disney I went wig-less for a couple of days, and honestly I felt free. While going through all of the treatment I took online classes for college being an education major I would not let myself fall behind. It was another stress which I put on myself and wish I did not. However it gave me something to do. Finally on November 28th 2011, I had my surgery the removal of my tumor. They removed a grapefruit size amount of mass. I have 14 stitches in my thigh and I am now doing Physical Therapy. I know it can be scary going through cancer and not knowing what could happen. But my advice as a survivor now is to have a good attitude and take each day as a brand new start. Also, always tell yourself that you can do it! and you can kick cancer in the butt!!!!! because we are young and we have a life to live.

Seminoma IIB

November 14, 2011 by  
Filed under Survivor Stories

It’s been over 6 months since I found out I had a malignant tumor. On March 24th, I visited an Urologist and he didn’t save me from hearing one of the most shocking news of my life. After my Ultra Sound exam, I heard something along the lines: “Yes, it is cancer. Yes, it can be malignant. Your testicle needs to be amputated. You will need further treatment, either chemotherapy or radiation. But it doesn’t mean you won’t be a real man just with one ball…” OK. hold up. I was in shock. After I heard words like cancer, amputation, chemo, I couldn’t hold myself up from letting a tear fall. Is this really happening to me? I went outside crying. Smoked like 3 cigarettes in a row. And from that day, I knew my life would never be the same… To make the long story short, I ended up with 3 rounds of BEP chemotherapy treatment (Bleomycin, Etoposide, Cisplatin IV drug cocktail). I was very depressed during the whole process, but I had my family and friends by my side. I am very grateful for that. On July 28th, I had my latest CT scan to find out my Lymph Nodes are back to normal and am in “clear.” Never would I have thought I would beat cancer while still being a teenager. One of my goals before turning 20 was to finish a novel. I finished cancer. And maybe one day I’ll write a book about it.

Back in treatment, back in the community

September 14, 2011 by  
Filed under Community, Newly Diagnosed, Support, Survivor Stories

Hey everyone,

I’m really glad that this site is still here and that people are benefitting from it. I was first diagnosed with Synovial Sarcoma at age 15 in 2002. Chemo, major surgery, radiation… we all know the drill, I’m sure.

Remission follows, thankfully. Lots of physical therapy. Then I graduate high school, move away for college, pursue a career in music, and then move home for a bit this summer after 6 years away. BAM! 8 years cancer free, and a tumor grows on my right knee 2 months ago and I find myself right back where I was. I could yap about that for hours, but I’m so goddamn tired to talking about it with my friends and family. I showed up on here again to see how this community was doing.

Like I said, I’m glad this site is as active as it is. BUT….. we can do better, people. And since this place is founded on donations and limited time/resources, we should try to be active in playing a role in that. I’m talking almost-exclusively about Facebook. Yes, I’m aware of the Facebook Group that we have. For those who aren’t, go here:  http://www.facebook.com/groups/37673471877/

Still, I recall many of the lost times I went through during my first battle, and it these days it just feels so senseless when we have the means of communicating with people who really understand. And that’s why we’re all here, isn’t it? We can talk to our friends and family, and they will listen to us until their ears bleed. But we’ve all had that feeling; as if we’re talking to a wall or speaking a different language. The feeling that someone is nodding their head without truly understanding. So we come here to find that understanding, learn about the problems we’re having, and help others cope with theirs.

Not everyone is desperate for someone to talk to all the time — I understand that. But I get the feeling (based on my own experience) that most of us simply aren’t connected enough. If you feel like you want to, then you should do it. Be it through private conversations, email, chat, or anything else.

My name is Evan Ruscher. I am 24 years old. This is my Facebook page: http://www.facebook.com/eruscher. I’m unemployed and beginning cancer treatments for the second time, so trust me, I’m on there a lot. Friend me! Don’t be shy! I live about 20 miles west of Rochester, NY. If you EVER want to talk about anything, please contact me… on here, on Facebook, or on the TLWC group page. If you want to go out for dinner, coffee, or a drink (okay, this site is for teens, but I know I’m not the only one over 21) in the area… let’s do it (barring our respective health, of course). Hell, we can talk about everything BUT cancer, if that’s what’s best!

I can’t stress this enough: you should not feel alone. We’re the 21st century digital kids — there’s no excuse not to join together in a community, unless of course you don’t want to. We came to this site because we know that feeling of isolation, and that lack of understanding that we deal with so often. So…. we have the methods these days…. why not go around all that mess and become a stronger group?

 

Best Wishes,

Evan

 

 

 

Stage IIB Seminoma

September 2, 2011 by  
Filed under Community, Survivor Stories

It

graduation

April 14, 2011 by  
Filed under Survivor Stories

My daughter has Hodgkin’s Lymphoma.  She has lost her hair.  How does she wear a cap for graduation in June?

Support for teenager going through cancer on facebook

April 11, 2011 by  
Filed under Survivor Stories

Hello I am a 16 year old teenager who went through cancer last year I had a germ cell tumor in my brain I went through chemo radiation and a few surgeries i like to think I know what im talking about lol.  But the page is called “support for teenagers going through cancer” search for it on facebook its the one with red blocks picture that say support.  Just post on the wall and we can start talking. You can also message me if you want it private my name is Braidon Schaffer my profile picture is a white hummer.  Il also link the page here http://www.facebook.com/#!/pages/Support-For-Teenagers-Going-Through-Cancer/150351921695249

ewings sarcoma

April 6, 2011 by  
Filed under Survivor Stories

Our address mail is iselamca@yahoo.com.mx
or joseguillermo.ruiz@yahoo.com.mx Will be a pleasure contact with you.
God is good.

ewings sarcoma

April 6, 2011 by  
Filed under Survivor Stories

Hi, Im Isela, my son Guillermo was dx in 2008 ewings sarcoma soft tissue

one year treatmen (surgery, chemo, radiation and chemo) Now he will be 19 years old

Is a happy boy, healthy with a normal life… His check is now every 4 months.

Please if you want to contact me will be a pleasure share with you our experience.

We are from Mexico, City…

First Round of Chemo tomorrow

I am no longer technically a teen… I just turned 20 in January.. but who’s counting really

I was diagnosed with a rare form of the Ewing’s Sarcoma family of tumors called PNET in February of this year.

I start my first round of an intense chemo cycle tomorrow.

Through out this whole thing I haven’t been scared of cancer, or death.. just the side effects and the things that I can’t predict.

I will loose my hair, probably blow up like a water balloon.. and apparently my nausea meds will make me super hungry so I could gain wait. I have never been one too worried about what people think of me and how I look. But now that my appearance is out of my control and I will have cancer patient written all over me.. I am so devastated.

How do you all handle the appearance changes?

xo K

March 17, 2011 by  
Filed under Survivor Stories

Hi!My name is Yangzi.I’m 15.I’m from China.I diagnosed with osteosarcoma on my right ankle in August,2009.The doctor did the biopsy at the wrong position,so they thought it was benign.(That was wierd).And then I had  a surgery on my ankle,after that they realized it was a cancer.I had chemo for 3 months in China.And I came to America in 2010.I had the amputation in June and had chemo for 5 month.Also I had a recovery surgery on my leg to make the bone area smooth. I have lived without cancer for 4 months.And I’m still doing physical therapy for the prosthesis.I feel kind of  lonely now,because I havn’t seen my friends for one year.I live in Philadelphia now.Because of I had cancer I hope I can stay in America for checking and to go to school soon.
Sorry,I’m learning English,I don’t If I confuse you.Thanks for listening!

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