Parosteal Osteosarcoma - Proximal Humerus - Age 28

marysorens
marysorens Member Posts: 9
edited March 2014 in Bone Cancers #1
I would like to welcome anyone who has questions about limb salvage surgery of the humerus, or anyone who would like to connect with an adult suvivor of osteosarcoma, to contact me. My story is written here. And I am starting a web page for parosteal osteosarcoma survivors here. I enjoy sending cards to patients in treatment and getting to know other survivors. I have done a lot of research on parosteal osteosarcoma and also have a heart for parents of children with osteosarcoma.

God bless,
Mary

Comments

  • char1970
    char1970 Member Posts: 17
    #2
    Hello Mary - didn't want you to feel neglected any longer from this site. So I'm reaching out to you - please take my hand walk with me as we chat about LIFE!

    Love ya girl,
    char
  • char1970
    char1970 Member Posts: 17
    #3
    forgeot to mention there's a great site for adult bone cancer survivors - abcsurvivors.net.

    char
  • cheryl48
    cheryl48 Member Posts: 1
    #4
    Hi my name is cheryl. I have recently found out that I have a bone cyst on my tibia, the pain has been going on sence oct. of 04 I've had bone scan mri and a knee surgery to help the pain go away now they think the pain in my bone is coming from my back. The bone pain is in my bone and feels like a tooth ache at times it's not constant and is much worse at night and wakes me up i have to take a pain med and wait an hour the pain like I said is not constant but when it hits it's pretty intense. The doc has ordered another mri i will have today i just had one last week and he said the tumor hasn't changed and repeat the bone scan in oct this year. But I'm really worried about the pain and them not doing a biopsy to make sure it's not cancer but from what i've read i should have a biopsy the reason I'm writing you is because i would like to know someone's opinion who has been there. please send me an email when you have time thanks so much for reading this take care and hope to hear from you soon cheryl scwades@earthlink.net
  • nhames
    nhames Member Posts: 2
    #5
    cheryl48 said:

    Hi my name is cheryl. I have recently found out that I have a bone cyst on my tibia, the pain has been going on sence oct. of 04 I've had bone scan mri and a knee surgery to help the pain go away now they think the pain in my bone is coming from my back. The bone pain is in my bone and feels like a tooth ache at times it's not constant and is much worse at night and wakes me up i have to take a pain med and wait an hour the pain like I said is not constant but when it hits it's pretty intense. The doc has ordered another mri i will have today i just had one last week and he said the tumor hasn't changed and repeat the bone scan in oct this year. But I'm really worried about the pain and them not doing a biopsy to make sure it's not cancer but from what i've read i should have a biopsy the reason I'm writing you is because i would like to know someone's opinion who has been there. please send me an email when you have time thanks so much for reading this take care and hope to hear from you soon cheryl scwades@earthlink.net

    Cheryl,
    Just want to share
    Cheryl,

    Just want to share my story because it sounds so similar to what you are experiencing. I was exercising at the gym when I noticed a pain in the back of my knee every time I would squat. I just thought I had pulled a muscle or something. Anyways, the pain continued and I tried to ignore it. As time went on, the pain started to wake me up at night. It would be like a deep, throbbing pain that nothing seemed to help. The pain was very random....it would come once every couple of weeks, last 1-2 hours, then go away. I finally went to the doctor and they immediately did an XRAY which showed a bony tumor on the back of my femur. Things started moving quickly then. I had numerous scans and was referred to an Othopedic Oncologist who did the biopsy and diagnosed me with Parosteal Osteosarcoma. I had a major reconstructive surgery that got all of the cancer and I did not have to have any chemo. It has been 14 months since my surgery and I am still cancer free! Please feel free to ask questions if I can be of further help.
  • Albert1
    Albert1 Member Posts: 2
    #6
    nhames said:

    Cheryl,
    Just want to share
    Cheryl,

    Just want to share my story because it sounds so similar to what you are experiencing. I was exercising at the gym when I noticed a pain in the back of my knee every time I would squat. I just thought I had pulled a muscle or something. Anyways, the pain continued and I tried to ignore it. As time went on, the pain started to wake me up at night. It would be like a deep, throbbing pain that nothing seemed to help. The pain was very random....it would come once every couple of weeks, last 1-2 hours, then go away. I finally went to the doctor and they immediately did an XRAY which showed a bony tumor on the back of my femur. Things started moving quickly then. I had numerous scans and was referred to an Othopedic Oncologist who did the biopsy and diagnosed me with Parosteal Osteosarcoma. I had a major reconstructive surgery that got all of the cancer and I did not have to have any chemo. It has been 14 months since my surgery and I am still cancer free! Please feel free to ask questions if I can be of further help.

    parosteal osteosarcoma
    Dear nhames:

    I have just posted story of my daughter in law diagnosed with parosteal osteosarcoma, low grade (stage 1, I believe) on femur, near hip joint. No chemo indicated. Two choices. Doctor says less-invasive reconstruction with bone is unsuccessful, more often than not (!!!) Titanium implant is usually successful, but much more invasive, requiring in addition what amounts to hip joint replacement (because of proximity to hip).

    Which reconstruction did you have and how did it turn out?

    What city are you in?

    Thanks!
  • Mmfred
    Mmfred Member Posts: 1
    #7
    nhames said:

    Cheryl,
    Just want to share
    Cheryl,

    Just want to share my story because it sounds so similar to what you are experiencing. I was exercising at the gym when I noticed a pain in the back of my knee every time I would squat. I just thought I had pulled a muscle or something. Anyways, the pain continued and I tried to ignore it. As time went on, the pain started to wake me up at night. It would be like a deep, throbbing pain that nothing seemed to help. The pain was very random....it would come once every couple of weeks, last 1-2 hours, then go away. I finally went to the doctor and they immediately did an XRAY which showed a bony tumor on the back of my femur. Things started moving quickly then. I had numerous scans and was referred to an Othopedic Oncologist who did the biopsy and diagnosed me with Parosteal Osteosarcoma. I had a major reconstructive surgery that got all of the cancer and I did not have to have any chemo. It has been 14 months since my surgery and I am still cancer free! Please feel free to ask questions if I can be of further help.

    Hi, I just had a par removed

    Hi, I just had a par removed from my left distal femur. An allograft was used to reconstruct my bone and the cancer was successfully removed! Your story sounds similar to mine so I wanted to reach out. I would love to hear any words of wisdom you have as far as recovery goes...I was told I would be non weight bearing for 3-6 months and am having moments of frustration with my inability to walk (and RUN!) and my overall dependence on others to help me with everyday tasks.  I hope your leg is doing great! 

Discussion Boards