Sarcoma Sucks

jkelley
jkelley Member Posts: 4
edited March 2014 in Sarcoma #1
I have Osteosarcoma. My surgery was in June of last year. Im 24 and love to surf, my doctor told me i wont be able to anymore but i beg to differ. I recently got me a longboard so im gonna try it out this summer. I was wondering if anyone else was having any problems with there leg since surgery. I have bad numbing pains in my foot and cant bend my leg all the way back. So what problems have you had with your surgery and have you found anyway to help it or decrease the pain?

Comments

  • pmcpr95
    pmcpr95 Member Posts: 2
    #2
    Me too sweetie. Same cancer!! Scar tissue is the cause of your leg not being able to bend. Lots of therapy will help loosen it up but to be honest, too much stuff went on in there for it to be perfect. The numbess is a keeper as well. You can't imagine how many nerves are affected. But get back on that surfboard. You are alive!! That is what counts.
  • Mike99
    Mike99 Member Posts: 22
    #3
    Ok I guess I have to start somewhere so I guess I will start with your post. I was diagnosed with a Lipo sarcoma almost 5 years ago and I have never formally discussed my feelings with anyone. I found this site but have just now gotten the nerve to actually talk about it. In regards to your particular diagnosis I will say that your Doctors word are just that, WORDS! I was told the same thing about Ice Hockey and walking and running and was even told I would probably lose my leg. Let me tell you a short story. 1 Year after I was found to have the sarcoma I returned to the ice very reluctant because of the doctors words. I played in a league that was lower than the competition I was use to. I came out in the first period and I all of a sudden forgot I had any problems at all and went down in the first 4 minutes and scored a goal. My wife and her family and my many friends from the team came out on the ice and hugged me and patted me on the back and the funny part was that the other team knew nothing of my previous condition and looked at us like we were crazy. Well I took that puck and wrote on it in white marker, "Shove this up your **** and never tell me I can't!". J, you have to let your body tell you what you can and can not do. pmcpr95 was right in that you might need to go to therapy in order to loosen up the scar tissue. I had to go for 3 months and it helped a great deal. I hope you take that big old long board and show everyone that you beat cancer and it did not beat you. I thank you for being my first reply and hope you will keep me informed of your progress. God Bless and the best of luck to you.
  • MyWay
    MyWay Member Posts: 1
    #4
    I am 25 and was diagnosed with osteosarcoma when I was 23. My tumor was in my left femur and had a total knee replacement - I got the same lecture - no running or jumping, ever. My passion is softball. I am currently lifting weights to get my knee in shape for playing this summer - along with a brace. I know that I won't be able to play at the level that I used to, but I still want to be out there!! As for the pains in your foot, I had them, too, but they go away after a while. The bend in your leg will come back in time - just do some therapy to be sure you don't do too much at once. Just give it all time, it WILL get better!!
  • jcthomas
    jcthomas Member Posts: 15
    #5
    I am 36 and had surgery to remove my right leg hamstring 8 years ago - soft tissue sarcoma within the muscle. Scar running from behind knee to middle of my right butt cheek. I was and still am an avid road bicyclist. I was told I probably would never ride the same again but I am now a better rider than I was before the surgery. Just because someone else says you can't do it does not mean you can not try. I too have pain and numbness in my leg, especially towards the back of my upper thigh where the hamstring would normally be - my sciatic nerve is very exposed and at times becomes excruciating painful but I would never let it stop me from turning those pedals and joining my fellow bikers. One woman I met on a ride had both hamstrings removed.
  • JohnLeo
    JohnLeo Member Posts: 1
    #6
    Mike99 said:

    Ok I guess I have to start somewhere so I guess I will start with your post. I was diagnosed with a Lipo sarcoma almost 5 years ago and I have never formally discussed my feelings with anyone. I found this site but have just now gotten the nerve to actually talk about it. In regards to your particular diagnosis I will say that your Doctors word are just that, WORDS! I was told the same thing about Ice Hockey and walking and running and was even told I would probably lose my leg. Let me tell you a short story. 1 Year after I was found to have the sarcoma I returned to the ice very reluctant because of the doctors words. I played in a league that was lower than the competition I was use to. I came out in the first period and I all of a sudden forgot I had any problems at all and went down in the first 4 minutes and scored a goal. My wife and her family and my many friends from the team came out on the ice and hugged me and patted me on the back and the funny part was that the other team knew nothing of my previous condition and looked at us like we were crazy. Well I took that puck and wrote on it in white marker, "Shove this up your **** and never tell me I can't!". J, you have to let your body tell you what you can and can not do. pmcpr95 was right in that you might need to go to therapy in order to loosen up the scar tissue. I had to go for 3 months and it helped a great deal. I hope you take that big old long board and show everyone that you beat cancer and it did not beat you. I thank you for being my first reply and hope you will keep me informed of your progress. God Bless and the best of luck to you.

    Mike, thanks for the post...and all of you thanks for the reply's. I HAD a leomyosarc until a few weeks ago. I've still got two drains sticking out of my right quad. The good doc told me I may not run any more marathons which is ok by me. I didn't want to run another one anyway! I do want to hike, ski, bike, climb et.... and I intend to. Perhaps I'm being naive about this whole thing but I plan to do all those things until proven otherwise. I lost approx. half my right quad but I'm guessing there's enough left to get me back out there. Who knows, maybe I'll run the Boston marathon one more time for old times sake.
  • jerzfam
    jerzfam Member Posts: 15
    #7
    I have osteosarcoma, too. Mine is, believe it or not, in my ribs! I had to have two ribs and part of my sternum removed. I just finished 9 months of chemo (cisplatin and adriomycin) which were 96 hour drips every 3 weeks. Glad it's over but am very anxious to get my life back. I still am on pain meds and anti-nausea meds. I am encouraged by your ambition to surf again. I wish you lots of luck and will pray for you. Hang in there, just don't do too much too soon, maybe you will build up more energy and strength a little at a time.
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • Sully
    Sully Member Posts: 1
    #9
    My mother has Sarcoma. It started in her left thigh. The surgeon removed her leg all the way up to her hip because he said the tumor was wrapped around the main artery and it was cutting off the blood supply to her leg. What I am wondering is did the surgeon take her leg when he didn't need to. Could he have gone in and taken the tumor out and saved her leg. The Sarcoma has spread to her lungs and her spleen, because she didn't have chemo after the surgery. They are telling my family that if she doesn't have chemo now, that she may have six months to live and if she has it that she may have a year and a half. She had to fight to have the chemo. She is 73 years old and they don't seem to try as hard for older people as they do for younger people. She is now having chemo so we hope to have her around for a while. But we have learned through this that the doctors don't always have the patients best interests at heart when they make decisions. You have to fight them so you can make your own decisions. It's your life not theirs and especially when they are talking about taking off a limb, get a second or third opinion.
  • Mike99
    Mike99 Member Posts: 22
    #10
    Sully said:

    My mother has Sarcoma. It started in her left thigh. The surgeon removed her leg all the way up to her hip because he said the tumor was wrapped around the main artery and it was cutting off the blood supply to her leg. What I am wondering is did the surgeon take her leg when he didn't need to. Could he have gone in and taken the tumor out and saved her leg. The Sarcoma has spread to her lungs and her spleen, because she didn't have chemo after the surgery. They are telling my family that if she doesn't have chemo now, that she may have six months to live and if she has it that she may have a year and a half. She had to fight to have the chemo. She is 73 years old and they don't seem to try as hard for older people as they do for younger people. She is now having chemo so we hope to have her around for a while. But we have learned through this that the doctors don't always have the patients best interests at heart when they make decisions. You have to fight them so you can make your own decisions. It's your life not theirs and especially when they are talking about taking off a limb, get a second or third opinion.

    Sully, First of all I want you to know that I am adding your Mother to my prayer list. Second of all anyone that does not get a second opinion for a procedure so drastic is foolish. We all become monday morning quarterbacks but hopefully others will heed our advise and get a second opinion. Chemo may not stop the spread but maybe it will slow it down enough to give you more time to tell her how much you love her and how much she means to you. I am sure the one thing we regret is how much time we lost by not spending it with our loved ones. I read this once and maybe it will help. "Life is not measured by the number of breaths we take,
    > but by the moments that take our breath away."
    Good Luck to you and God Bless.
  • jrtelling777
    jrtelling777 Member Posts: 1
    #11
    jcthomas said:

    I am 36 and had surgery to remove my right leg hamstring 8 years ago - soft tissue sarcoma within the muscle. Scar running from behind knee to middle of my right butt cheek. I was and still am an avid road bicyclist. I was told I probably would never ride the same again but I am now a better rider than I was before the surgery. Just because someone else says you can't do it does not mean you can not try. I too have pain and numbness in my leg, especially towards the back of my upper thigh where the hamstring would normally be - my sciatic nerve is very exposed and at times becomes excruciating painful but I would never let it stop me from turning those pedals and joining my fellow bikers. One woman I met on a ride had both hamstrings removed.

    I guess I will start here, this is my first time posting and I'm not sure if I'm doing it correctly. My husband was recently diagnosed with extraskeletal soft tissue sarcoma in his left thigh. He went to a sports medicine doctor seeking treatment for what he thought was a muscle tear. An MRI showed a large tumor hiding inside the hamstring muscles. The cancer has not spread so far. He just finished his second round of chemo and will have one more round before surgery. He is also doing radiation and will undergo three more rounds of chemo after surgery. His tumor is encasing his sciatic nerve. We are hoping/praying the tumor shrinks, which will save the nerve. I haven't been able to find anyone with a similiar experience yet. I would love to hear of any success stories of similiar tumors shrinking from the chemotherapy. This has been a roller coaster ride to say the least. He is being treated at OHSU in Portland OR at a Sarcoma center.
  • Mikelly
    Mikelly Member Posts: 1
    #12
    jrtelling777 said:

    I guess I will start here, this is my first time posting and I'm not sure if I'm doing it correctly. My husband was recently diagnosed with extraskeletal soft tissue sarcoma in his left thigh. He went to a sports medicine doctor seeking treatment for what he thought was a muscle tear. An MRI showed a large tumor hiding inside the hamstring muscles. The cancer has not spread so far. He just finished his second round of chemo and will have one more round before surgery. He is also doing radiation and will undergo three more rounds of chemo after surgery. His tumor is encasing his sciatic nerve. We are hoping/praying the tumor shrinks, which will save the nerve. I haven't been able to find anyone with a similiar experience yet. I would love to hear of any success stories of similiar tumors shrinking from the chemotherapy. This has been a roller coaster ride to say the least. He is being treated at OHSU in Portland OR at a Sarcoma center.

    Tumor encasing sciatic nerve
    I would be interested in how the treatments and surgery tuned out. I have a large tumor in my hamstring. In appears to be encased but does have the sciatic nerve running through it. Monday I am having an incision biopsy to determine the exact type and grade. After that they will determine the course of action. I am going to UCLA.
  • Karmaroo
    Karmaroo Member Posts: 2
    #13
    Mikelly said:

    Tumor encasing sciatic nerve
    I would be interested in how the treatments and surgery tuned out. I have a large tumor in my hamstring. In appears to be encased but does have the sciatic nerve running through it. Monday I am having an incision biopsy to determine the exact type and grade. After that they will determine the course of action. I am going to UCLA.

    Sarcoma sucks
    Mikelly-how did your tests turn out? I was diagnosed with lieomyoscarcoma following a biopsy in May. I finished 25 treatments of radiation on August 4th. I am currently in holding pattern for my skin to heal. I am scheduled to have my tumor/right hamstring removed on Sept 16th. The radiation did shrink the tumor to almost half it's size. My sarcoma oncologist did not feel that chemo would offer much of an advantage (about 6%), and would offer about a 30% risk. I opted out of chemo- at least for now. Has anyone else had this experience. It is encouraging to see that there are people out there who have had a hamstring removed and that are still able to walk and participate in their physical activites. I'm so nervous about having this surgery.
  • Bsaenz6110
    Bsaenz6110 Member Posts: 1
    #14
    Sarcoma DOES suck!!
    Hey have you gone back to check on your knee?? My leg was hurting and my foot was really tingling. As if it was asleep. Now I can't even move my toes in my left leg. It just so happened that my cancer came back and ver aggressive. I actually Just got on here cause of you. Please let me know if you have gone?? If not please go! N what cancer center did u go to??

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