Mellissa's Journey with Fibromatosis

Survivor: Sarcoma - Adult Soft Tissue Cancer > Fibromatosis

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 8 years ago, Female, Age: 24, Stage II

  1. 1
    almost 5 years ago
    Mellissa's Avatar

    Diagnosed

    Oh No

    I was diagnosed when I was 16 years old. We found a lumb on my left thigh and didn't really think anything of it especially when my family care doctor told us it was just a super bruise. When it didn't go away we got worried and so did my doctor so they sent me to Children's Hospital. I knew something was wrong when the nurse went and got the radiologist 2 minutes into my ultra sound. They said there was a solid mass there but they couldn't tell what it was and that I needed more tests and to visit a surgeon. So over the course of about a week I had every test imaginable. I then visited a surgeon who said I needed a biobsy right away and that same day I visited the cancer floor and my hospital and met my soon to be oncologist. The day I had my biobsy was the day that my parents were told I had cancer. When I was told I had cancer I was very angry at God and hurt that he would do something like this to me. I had done nothing wrong. The first day I walked into my cancer clinic everything I saw there changed my mind. I saw little kids attached to poles running around laughing and having fun how could I be all sad and moppy if they were so happy. I was often tesed at school for having cancer and some friends at the time teased me as well. I was even told I was faking having cancer just so I could get attention. I was told when I showed up to school I never looked sick enough. I came through it all and I am a much stronger person because of it all. God would never give me something I couldn't handle.

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  2. 2
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    My first surgery was to see what type of cancer that I had. Innitially they thought that I had a soft tissue sarcoma and they told my parents to prepare for me to loose my leg. Luckly it was not as bad as they thought it was. My second surgery was to place a port. My surgeon was pretty stupid and called my mom while I was laying unconscious on the table to ask where she wanted the port. My mom just told him wherever he thought was best....so he put it in my boob. The recovery from that was very hard on me as the port was in an awkward place and they had to cut deep into the side of my neck.

    Went as Expected: Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    almost 5 years ago
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    what to do?

    Decision Point

    The innitial protical for my type of cancer was surgery to remove the tumor but, because mine was so large and wrapped around my thigh muscles and bones they would of had to take out over 95 percent of my thigh muscle or take my whole leg. My mom did not want to do that to me as I was only 16. So she did some research and argued with my doctors and she decided to not go ahead with surgery which made my doctors mad. I am glad my mom did that because she saved me from alot of hurt.

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  4. 4
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was put on two different chemotherapy drugs, Methotrexate and Vinblastine. I was given them through outpaitient clinic at East Tennessee Childrens Hospital. I would arrive at around 10am and leave around 6-7pm depending on what my counts were and how I was feeling. I know that is not as long as other people but to me it was very very long.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    almost 5 years ago
    Mellissa's Avatar

    New type of Chemotherapy

    Clinical Trial

    My mom decided to not have me do surgery and because of that they had to put me on an experimental treatment. The chemotherapy was designed to stop more growth from happening. It was not a cure and it will never be a cure.

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  6. 6
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was given two different chemotherapys, Methotrexate and Vinblastine. I was given them through my port through the outpatient clinic at East Tennessee Childrens Hospital. I would arrive at around 10am and stayed till about 6-7pm. It may not seem long to others but to me it was so very very long.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    almost 5 years ago
    Mellissa's Avatar

    I had a little bit of everything.

    Side Effects

    My side effects were not fun to deal with. I had alot of nausea and threw up every single time I recieved chemo and would continue to be sick for several days to come. I became anemic and had low blood counts like everyone else. I did however never loose my hair. I do not know why I was sappose to but I never did. I think it was God looking out for me he knew that if th at happened it would kill me inside as vain as that sounds. I lost alot of weight about 50-60 pounds. I am 5"8 and at the end of treatment I weighed around 120. Which may not seem that bad but for a girl of my height it was. I never want to experience anything like that again. I think I have thrown up more times in my life than I ever want to do again. It was probably one of the worst feelings in the world to always be sick and to not be able to do things with my friends or to go out and have fun. I also experienced chemo brain during and after treatmnet. Before becoming sick I was very good in school and math imparticular. During treatment I had a hard time remembering and it frustrated me. I looked foward to having my awesoome memory back when treatment was over with. However, that was and is not the case. I am one year off treatment and my brain still fails me. I often have to come home from college and re teach myself how to do things. Especially in math, I will understand how to do it during class but by the time I come home I cannot remember how to do it. I talked to my doctor as to why this has lasted so long when everyone said it should have went back to normal. My oncologist told me that in some cases when the treatment plan is long like mine was that the chemo brain never really goes away.

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  8. 8
    almost 5 years ago
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    Fear of Return

    Other Care

    Even though I am off treatment my cancer is not gone. My tumor is still there and it will never go away unless they take my leg. My cancer is shaped like a octupus, it has little tenticles that are wrapped around my bones and my muscles. My tumor is fast growing and random, this means that it could start growing at anytime. So I have to have MRI's every few months to monitor my tumor and to make sure that its still stable. The most someone has been off treatment without growth is five years. I hope that I can make it to that mark and beyond.

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  9. 9
    almost 5 years ago
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    Finished treatment

    Celebration

    I had many celebrations in my cancer treatment. My first celebration was when we were told that the chemotherapy had shrunk my tumor. There was a 1% chance that this would happen and it happened to me, three seperate times. This was by far the best news we could have had, that ment that they didn't have to take my leg. The next celebration was my end of chemo. I was on chemotherapy for 22 months. Half of that time I was on chemo every week and half of the time I was on every other week of chemo. I had 54 rounds all together, I have had three surgeries, several hospitalizations and many other side effects. I beat the odds though I am a cancer survivor!!!

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