soft tissue sarcoma

cassilly

Hello All,
I am 12 1/2 years out from my original diagnosis at the age of 30. I have had 10 abdominal surguries, 3 different courses of chemo, 2 different courses of radiation therapy and 5 recurrences. I am 7 weeks out from my last surgery and doing well. When I was originally diagnosed, my expected survival was less than 5 yrs. There weren't any discussion booards like this, I think this is great to have other people around that can empathize. Hope to hear from some of you...lets get this discussion rolling!

dat99

Hi. I am 4 years out from my diagnosis at age 27. I had 2 rounds of chemo, abdominal surgery, and 7 weeks of radiation. I consider myself extremely blessed because I have had no recurrences. I am a member of the board for the ACS in my county. I am also the leader of our Touch group, but my favorite thing is Relay For Life.

windwm

I had a lymph tumor removed in my groin which was malignant. The primary source is still unknown. I have not went through chemo or radiation. I have been seeing a sarcoma research specialist at Moffitt Cancer Center in Tampa. I had the lymph removed and also had a complete historectomy. My hormone receptors are so high, I can not go on any hormone therapy. So I have been in limbo for a full year and left untreated. They have found things on my quarterly CT scans, pet scans sometimes are ordered, but still nothing. The wait for the unknown is very scary. Sometimes it leaves me spinning in circles with my life.

After CT scans left me in limbo for Christmas, I decided that worry and fear are counter productive. Your mental health is more important than the medicine. Life is and always was unpredictable. Let it go, moment by moment to a higher power. Were not in control anyway.

Easier said than done! I would like to keep in touch with more who are going through the same battle. What is soft tissue sarcoma? Please keep in touch.

windwm

dat99 said:

Hi. I am 4 years out from my diagnosis at age 27. I had 2 rounds of chemo, abdominal surgery, and 7 weeks of radiation. I consider myself extremely blessed because I have had no recurrences. I am a member of the board for the ACS in my county. I am also the leader of our Touch group, but my favorite thing is Relay For Life.

I'm walked with Relay for Life the day I found out I had cancer, I was already scheduled to walk with friends. What an uplifting and eye opening experience. I am not alone! Please keep in touch!

jlek

Hey there,

I went into remission as of January 2000. I had a liposarcoma and it truly was the battle of my life. I was 32 with 2 small boys (18mos & 5)and was scared out of my mind! The original doctor told me "it was my leg or my life". I didn't like that answer so I went to my local MD Anderson and I have been blessed ever since. I would love to "talk" and help any way I can. I go back for my check up in June 2003.

Mike99

jlek said:

Hey there,

I went into remission as of January 2000. I had a liposarcoma and it truly was the battle of my life. I was 32 with 2 small boys (18mos & 5)and was scared out of my mind! The original doctor told me "it was my leg or my life". I didn't like that answer so I went to my local MD Anderson and I have been blessed ever since. I would love to "talk" and help any way I can. I go back for my check up in June 2003.

Wow! I am starting to not feel so uncomfortable about talking about my Cancer. I too had a liposarcoma and it will be 5 years to the day on July 17th. You know there are things that happened yesterday that i can not remember but I will never forget the night when the Ortho surgeon called me and told me I had cancer. This guy was such a nice guy I actually felt bad for him that he had to tell me the bad news. I thought he was going to cry on the other end. Well I took just 5 minutes and felt sorry for myself, cried and hugged my wife and then I said," this can not be happening and maybe it is not as bad as it sounds. We went the next week to see the Ortopedic Oncologist and we were very upbeat about how we were going to do what was needed and get back to as normal a life as we had before which was not saying much since we had two kids and a dog that thought he was a child too. LOL We get in the office and the next thing you know the nurse is picking my wife up off the floor because we were just told I may not make it. God the words alone sting like a slap in the face. Well of course I had to say the macho thing like, "are you sure because I just got done playing the best season I ever played in hockey". Well after we got my wife settled I said, "listen I don't give up to anything and I don't lose easily so tell me what I have to do and lets get it started". well after many rounds of some of the most toxic stuff a body can take I now stand here counting years in which I have made it past that 35th birthday. Don't get me wrong I am still looking over my shoulder and I guess that is why I felt it is time to talk about it. I feel if I talk here I might be able to talk to my wife and tell her that everyday I fear I may have a recurrence. I can not shake this feeling but I have learned to live with it but I hope that one day I can put it out of my mind. The body was easy to heal and now I must heal the mind. God Bless you all and I will keep all here in my daily prayers.

Stuckinmo

jlek said:

Hey there,

I went into remission as of January 2000. I had a liposarcoma and it truly was the battle of my life. I was 32 with 2 small boys (18mos & 5)and was scared out of my mind! The original doctor told me "it was my leg or my life". I didn't like that answer so I went to my local MD Anderson and I have been blessed ever since. I would love to "talk" and help any way I can. I go back for my check up in June 2003.

jlek - I too was told that it was "my leg or my life" when I was diagnosed 19 years ago. But because both the radiation cancer specialist and the cancer surgeon both quoted the same survival statistics I chose to keep the leg and have radiation. Now 19 years down the road I am dealing with constant pain, lymphodema and an open wound behind the knee. Five years ago I had a quite invasive biopsy where the surgeon took out a large portion from behind my knee (the site of the original tumor) and though it was all benign the skin was so distroyed from the radiation it never healed. So now I have frequent infections. I did go to the lymphodema clinic at Mayo and learned about manual lymoph drainage (MLD) message and that has helped with the swelling. The upshot of it all is - was to cure worse than the disease?

fighterJulie

I finally found a group of folks that are like me, amazing! I was diagnosed with histio sarcoma in my foot that had spread to my knee one year ago at age 30. Again the familiar "life or leg" option came about after 2 rounds of chemo failed. I chose to give up my leg, but have been struggling ever since with having a 2 year old little boy and being a graduated college athlete. I too am looking over my shoulder each round of scans and worry every 3 months around scan time. I'm jealous to hear of people keeping their leg, but there really wasn't an alternative given to me. I am thankful to be here. I feel like I'm in limbo wondering where I am in this whole game of cancer.

dgiacone

jlek said:

Hey there,

I went into remission as of January 2000. I had a liposarcoma and it truly was the battle of my life. I was 32 with 2 small boys (18mos & 5)and was scared out of my mind! The original doctor told me "it was my leg or my life". I didn't like that answer so I went to my local MD Anderson and I have been blessed ever since. I would love to "talk" and help any way I can. I go back for my check up in June 2003.

Hey,I was dx with a liposarcoma of the right upper thigh in March 2003. I had my second surgery about three weeks ago and will start radiation as soon as the surgery site heels. This is really scary and anything you can tell me about the whole thing will help.

lspencer45

dgiacone said:

Hey,I was dx with a liposarcoma of the right upper thigh in March 2003. I had my second surgery about three weeks ago and will start radiation as soon as the surgery site heels. This is really scary and anything you can tell me about the whole thing will help.

Keep a positive attitude and believe you can beat this thing. My husband was diagnosed with the exact same thing 2 years ago. We went through radiation, chemo and back and forth. I will be glad to share some of our experiences with you.

jgatkins

dgiacone said:

Hey,I was dx with a liposarcoma of the right upper thigh in March 2003. I had my second surgery about three weeks ago and will start radiation as soon as the surgery site heels. This is really scary and anything you can tell me about the whole thing will help.

Hi,

I was diagnosed with liposarcoma of the left groin area in September 2002.

Oddly enough I took the news very well. I think the surgeon who performed the biopsy and my family took it harder than I did. I guess I knew there wasn't much I could do except what the doctors were telling me that needed to be done and live one day at a time. But what helped most was staying focused on the task of going to work each day and knowing there were things in life that still needed my attention. A positive mental attitude can go a long way!

I missed 5 weeks of work and started radiation just before Thanksgiving. Initially radiation was easy but got progressively more difficult toward the end as I needed 35 sessions. It was difficult due to the radiated area, skin irritation from therapy and the fact there is not much you can do for relief.

I had scans in April and all was clear. I have what I would consider a minor case of lympademia. My leg will swell at times, (not too bad) and will get tired at times. I was provided custom fitted compression stockings which helps with support and circulation on the days I need it.

In all my experience was not enitrely bad because I did not dwell on the negative aspects. My advice is to listen to what the doctors say. Do what they tell you then go about living your life.

The information and statistics provide good information but don't let it scare you into hysteria.

I don't know if I will be around in 2 years or 5 years. All I can do is worry about today. Staying employed, watching my kids grow and making sure my life insurance is fully paid in the event its needed. But I have met people who have had cancer and have been cancer free for 10 even 20 years.The technology to treat cancer today is awsome.

Stay strong and best of luck!

triiton77

dgiacone said:

Hey,I was dx with a liposarcoma of the right upper thigh in March 2003. I had my second surgery about three weeks ago and will start radiation as soon as the surgery site heels. This is really scary and anything you can tell me about the whole thing will help.

I am 1 year out of my diagnosis with 4 more to go before the statistics catch up to what I already know. I will survive(so will you!). My advise to you or anyone is stay positive, get rid of negative people, and things in your life. Eat as best as you can. I was 31 when the news hit me, so I was at the start of my career and family life. Now I am still having difficulty picking up my long term goals, but with the help of the Lord ,its just a matter of time before I pick them back up. Take care of yourself and make sure you enjoy all the things you enjoy, stop waiting for the right time, and find the time. Make things right in your life as best you can. But always stay positive. Lastly humor is a good pill to swallow.
God Bless and Stay Strong.

Thomas.

mike3892002

Mike99 said:

Wow! I am starting to not feel so uncomfortable about talking about my Cancer. I too had a liposarcoma and it will be 5 years to the day on July 17th. You know there are things that happened yesterday that i can not remember but I will never forget the night when the Ortho surgeon called me and told me I had cancer. This guy was such a nice guy I actually felt bad for him that he had to tell me the bad news. I thought he was going to cry on the other end. Well I took just 5 minutes and felt sorry for myself, cried and hugged my wife and then I said," this can not be happening and maybe it is not as bad as it sounds. We went the next week to see the Ortopedic Oncologist and we were very upbeat about how we were going to do what was needed and get back to as normal a life as we had before which was not saying much since we had two kids and a dog that thought he was a child too. LOL We get in the office and the next thing you know the nurse is picking my wife up off the floor because we were just told I may not make it. God the words alone sting like a slap in the face. Well of course I had to say the macho thing like, "are you sure because I just got done playing the best season I ever played in hockey". Well after we got my wife settled I said, "listen I don't give up to anything and I don't lose easily so tell me what I have to do and lets get it started". well after many rounds of some of the most toxic stuff a body can take I now stand here counting years in which I have made it past that 35th birthday. Don't get me wrong I am still looking over my shoulder and I guess that is why I felt it is time to talk about it. I feel if I talk here I might be able to talk to my wife and tell her that everyday I fear I may have a recurrence. I can not shake this feeling but I have learned to live with it but I hope that one day I can put it out of my mind. The body was easy to heal and now I must heal the mind. God Bless you all and I will keep all here in my daily prayers.

Any one wishing to discuss long term affects of surviving 20 years from soft tissue sarcoma, please email me at mike3892002@yahoo.com. I had it when I was 15 and am now 37.
thanks

Mike

rdallen

dgiacone said:

Hey,I was dx with a liposarcoma of the right upper thigh in March 2003. I had my second surgery about three weeks ago and will start radiation as soon as the surgery site heels. This is really scary and anything you can tell me about the whole thing will help.

Hey!
I agree with some of the other responses - make sure you have a great support group, doctors that know how to treat liposarcomas, think positive and keep a sense of humor. In '94, I was diagnosed with a large liposarcoma tumor in my right butt cheek. The surgeon who made the diagnosis specialized in orthopedic cancer at UCLA medical center in Los Angeles. The surgeon had me contact the "guru" of sarcomas at the Cedar Sinai Medical Center in Los Angeles for the chemo treatments. The Cedar chemo doc was renowned for treating sarcomas. My team of docs put me through 6 months of chemo and radiation in '95 and then surgery to remove the tumor. Although the surgery was deemed a success, they put me through one more round of chemo as "insurance" to prevent any spread of the disease. Because the tumor was sitting on top of a nerve, they cautioned me that I may not play tennis or golf as good as I had before the surgery and that I may walk with a limp. They said I could reduce the chances of a limp by doing weight conditioning on the leg. I came out of surgery using a walker, then went to crutches before I was walking on my own. It has been over 8 years since my surgery - I can say I do not walk with a limp, play tennis and golf as good as, if not better than, I did before the surgery. My right butt cheek is much smaller than before the surgery and it has left a prominent scar - but, it was a small price to pay for the results I received.

pamela55

I have Stage III retroperitoneal liposarcoma/spindle cell variety. Had 20 lbs tumor removed in April, along with right kidney, overary and fallopian tube. Have to do CT scans every three months, Stage III, but not to distant organs, 65% reoccurrence with 50% survival...different than yours but I'm back to work, though fatigued alot (desk job)...tumor damaged iliac nerve, so there's still numbness in thigh...which is a ****...chemo was out for me cuz organs moved back where they were supposed to be after tumor removal...they left titatium clips in me..."X" marks the spot where cancer will be coming back..a certainty, but it's not gone to my lungs/liver..yet, first CT next month..depends on where you were diagnosed, I went to Mayo Clinic in Rochester, MN, other than John Hopkins, there's none better. Good luck with everything, if you want to share, email me at probedeaux7@hotmail.com glad to listen...it's damned scary, no matter what age you are...