• Leiomyosarcoma anyone? Anyone?

    Asked by Shamrock_Bindi on Wednesday, November 21, 2012

    Leiomyosarcoma anyone? Anyone?

    i had leiomyosarcoma surgery on Sept. 27 2012. I had a 10x4x6 tumor taken out of my upper thigh (quad) I lost 60% of my leg muscles but am glad to have my leg..... Now I have a spot on my lung that they are concerned about... Where are you Leio peeps???? With all due respect to the "big box brand" cancers, that ain't MY cancer and my experience is TOTALLY different. I sure would love to chat with someone that has a similar type of situation going on.

    9 Answers from the Community

    9 answers
    • Harry's Avatar

      Yeah, I know what you mean. No one has my diagnosis, either. If you haven't found it yet, there is a foundation devoted to your cancer. http://www.nlmsf.org/

      almost 4 years ago
    • Peroll's Avatar

      While I don't have your cancer I do know that half or moreof the populaton has spots on thier lungs (same can be said about livers) and the vast majority don't have cancer. In my past I have had scans that have seen spots in both my liver and lungs. The liver was not cancer but the lungs were. This means you should not assume the worst without more evidence. You need to ask your Dr. a number of questions. First is, can the spot be biopsied to detewfor rmine what it is? This is the best way to konw for sure. If it can not be biopsied then the you need to ask how big it is and how fast yor cancer typically grows. You can then have anoter scan in say 8 to 12 weeks to see if it grows like cancer. I know that the news is scary but at this point hope for the best and if you have to fight the cancer with all you have again. It can be beat. Good luck

      almost 4 years ago
    • catherinemarr's Avatar

      well,I cant speak from experience,my cancer was the colon variety,but I personally know someone diagnosed with leiomyosarcoma twenty years ago,never has had a recurrence and maintains good function....HE also lost most leg muscles...GOD BLESS YOU,,,,,catherine

      almost 4 years ago
    • cathy1967's Avatar

      I have liposarcoma... did they leave your surgical site wide open - my surgery was 10/23/12 - they took a small muscle out of my upper thigh and now I am waiting for it to close. I was also told I have spot on my lung but my oncologist said not to worry about it - but now I am scared with every cough and pain in my chest

      almost 4 years ago
    • TubThumping's Avatar

      My tumor was a little bigger than yours and in my shoulder. Sarcomas are mean! I had a liposarcoma and have four spots on my lungs that my oncologist watches. They are small, too small to biopsy. They haven't changed much in two years so he says not to worry. He's not concerned therefor I don't need to be concerned either. Besides, there is nothing I can do about a recurrence or lung mets. If they happen I will deal with them. All I can do is get my regular scans. Take a deep breath and good luck.

      almost 4 years ago
    • sdskms' Avatar

      I hope you find this helpful. You are also more than welcome to contact me anytime. Unfortunately, in 2001, I, was diagnosed with Leiomyosarcoma in my thigh. Then in 2006 I learned it had metastasized to my lungs. That news was devastating to my family and me!

      Throughout the years since, I have had to bring, fax or mail ALL of my medical and personal records to one doctor after another. That task alone was a daunting and time-consuming job that zapped my patience and my energy! Because of this experience, my company, Minerva Health technologies Inc., designed a new software product you should all know about. It’s called Minerva Health Manager – a system that allows you to store all of your health information onto a portable flash drive as small as a house key.

      I was once hospitalized for several months due to a reaction to my chemotherapy drug, Doxil. After being admitted, I came very close to having an antibiotic drug administered to me that could have killed me. When I was asked for my health information, I couldn’t even remember my birth date let alone communicate clearly! But, fortunately, I had a prototype of Minerva Health Manager! I literally had all of my health information – the equivalent of every file from every doctor I had ever visited since my diagnosis – tucked away in my wallet, on my portable Minerva Health Flash Drive.

      My doctor reviewed my Minerva Health Flash Drive and a potential life-threatening situation was averted. It revealed that I was allergic to an antibiotic about to be administered. The injection could have killed me. I promised myself that If I survived I would continue the development of Minerva Health Manager, and make it commercially available to everyone.

      Minerva can store as much or as little health and medical information as you choose. For your family, you enter or scan in the data for every file from every doctor or facility you have ever visited. Minerva allows you to easily create accurate health records that include emergency contacts, diagnosis, medications, procedures, diagnostic images, medical alerts, trends in vital signs and lab results, living wills and much more. You can also enter all health records for your entire family and synchronize your personal health records with healthcare providers and other family members. All health records are securely saved on your computer – NOT on the Internet – and it is HIPAA compliant.

      Health and medical information can also be exported, easily and quickly, to a unique, portable Minerva Health Flash Drive, wristband or to an iphone, ipad or Android device. Because it can be read from any computer with a USB port – it makes it easily accessible by first responders in an emergency situation, as well as healthcare providers during regular office visits without access to the Internet. Everyone in your family, including children, can carry this potentially life-saving device at all times; including when we you are travelling, away at camp/school/college and participating in sports. It can help minimize medical errors, enhance communication between healthcare providers and patients, and most importantly save lives.

      Vist www.Myminerva.com for more information. We also work with many cancer related
      non profit organizations donating a portion of the proceed to these great organizations.

      almost 4 years ago
    • SuzieTampa's Avatar

      Hi, I was diagnosed with leiomyosarcoma in 2002, and it went to my right lung in 2003 and 2005. I've been in remission since. I'm on the board of the Sarcoma Alliance, which has 2 other LMS survivors and an oncologist who has studied LMS. http://sarcomaalliance.org

      You're welcome to join us on our 2 Facebook pages, live chat, discussion board and Peer-to-Peer Network. Everything is free.

      almost 4 years ago
    • Patria's Avatar

      Hello, I also had a large tumor removed from my left upper thigh and lost one and a half of another quad muscles. Prior to the surgery I went through two round of chemo (MAID) then 32 days of radiation and another two rounds of the same chemo. I just finished what was supposed to be my last round of chemo in March and was hoping that my MRI and CT scans done in April would show "all clear". Unfortunately, they found a lesion in each lung. I'm now waiting for another PET and Biopsy authorizations and procedures. Have you taken any thing like votrient? My doctor and I spoke about that briefly. We'll see. What have they done for your lung spot? I'm praying for us. This is a frustrating cancer because like you said it isn't one of the "big box brands" so they haven't done enough research and development. I pray that all is well with you!

      over 3 years ago
    • ChristyLee's Avatar

      I am a LMS survivor and have found that connecting with the LMS peeps on the Acor LMS listserve to be very helpful and inspirational. There are around 1000 of us on there from all around the world and we share treatment info, studies, research, etc. http://www.acor.org/listservs/join/73

      Just know, you are not alone!

      over 3 years ago

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