LONG TERM SARCOMA SURVIVORS WANTED

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  • Reba2
    Reba2 Member Posts: 3

    Not sure how to post on
    Not sure how to post on here. The stories of survival has blessed me. I was diagnosed in December with stage one but high grade liposarcoma. We did a wide excision and had clean margins. I then did six weeks of radiation and will follow up with scans. I have been blessed reading the stories because sometimes when you look up sarcoma you get scared out of your mind.

    high grade/stage one liposarcoma
    Hi Allysmommy


    I was just diagnosed by this few weeks ago, the first surgery they did not suspect anything baut pathalogy came back as high grade, so last week i had second surgery to get clean margins now waiting for my treatment options. thank you and everyone one else for encouraging stories as it has been very difficult.. can you tell me about the radiation? Thanks
  • saramschaper
    saramschaper Member Posts: 3
    koolchick said:

    Survivor for 18 years now!
    I am a long term survivor. I was diagnosed with a synovial sarcoma in 1991 - when I was 13. I found the lump in my right abdominal wall. It was very rare back then and is an unusal place for a sarcoma of this type. I had the tumour removed. It was 4cm in diameter. i had radiotherapy every day after school for about 4-6 weeks. I had regular check ups for the next 10 years.

    I am now 31 and perfectly healthy and have had no further problems. Other than the large scar on my abdomin and the large square where I had radiotherapy (which after 18 years has never been the same colour as my left healthy side of skin).

    I can honestly say that it hasnt effected my life that much - other than I have never been confident to wear any midriff or bikini tops becasue of the scar and discolouration of my skin from the radiotherpay. I also try to live each day - as I know things could have been so different. Am very grateful I was one of the lucky ones.
    xxx

    Synovial Sarcoma
    Hi! I am very happy to hear that you have been cancer free for 18 years following a Synovial Sarcoma! My husband, who was 24 years old when diagnosed, was diagnosed in Sept 2011 with Synovial Sarcoma. His was also in his right abdominal wall! When he had his first surgery to biopsy the tumor, it was already about 8-9cm. Then after surgery, it quickly grew back, reaching to about 5cm. Then he had 18 weeks of aggressive chemotherapy, which shrunk the tumor. Then 6 weeks of intense radiation. Now, we are on the last stage of treatment, which will be surgery to remove the tumor. We are hoping and praying that the surgeon is able to get clean margins, that way the cancer hopefully doesn't come back!

    It really makes me very hopeful after reading your post, because you have the same cancer my husband did, and in the same place. Your treatment plans were a little different, however still closely related. My husband is now 25 years old, and we hope to be able to say in 10 years that he is and has been cancer free. We are SO ready for this cancer to stop taking over our lives, so we can live again!

    Thank you for sharing your story!

    please respond back if you'd like!

    Sara and Nick
  • saramschaper
    saramschaper Member Posts: 3
    koolchick said:

    Survivor for 18 years now!
    I am a long term survivor. I was diagnosed with a synovial sarcoma in 1991 - when I was 13. I found the lump in my right abdominal wall. It was very rare back then and is an unusal place for a sarcoma of this type. I had the tumour removed. It was 4cm in diameter. i had radiotherapy every day after school for about 4-6 weeks. I had regular check ups for the next 10 years.

    I am now 31 and perfectly healthy and have had no further problems. Other than the large scar on my abdomin and the large square where I had radiotherapy (which after 18 years has never been the same colour as my left healthy side of skin).

    I can honestly say that it hasnt effected my life that much - other than I have never been confident to wear any midriff or bikini tops becasue of the scar and discolouration of my skin from the radiotherpay. I also try to live each day - as I know things could have been so different. Am very grateful I was one of the lucky ones.
    xxx

    Synovial Sarcoma
    Hi! I am very happy to hear that you have been cancer free for 18 years following a Synovial Sarcoma! My husband, who was 24 years old when diagnosed, was diagnosed in Sept 2011 with Synovial Sarcoma. His was also in his right abdominal wall! When he had his first surgery to biopsy the tumor, it was already about 8-9cm. Then after surgery, it quickly grew back, reaching to about 5cm. Then he had 18 weeks of aggressive chemotherapy, which shrunk the tumor. Then 6 weeks of intense radiation. Now, we are on the last stage of treatment, which will be surgery to remove the tumor. We are hoping and praying that the surgeon is able to get clean margins, that way the cancer hopefully doesn't come back!

    It really makes me very hopeful after reading your post, because you have the same cancer my husband did, and in the same place. Your treatment plans were a little different, however still closely related. My husband is now 25 years old, and we hope to be able to say in 10 years that he is and has been cancer free. We are SO ready for this cancer to stop taking over our lives, so we can live again!

    Thank you for sharing your story!

    please respond back if you'd like!

    Sara and Nick
  • saramschaper
    saramschaper Member Posts: 3
    Linsay said:

    Synovial Sarcoma
    Let's see, where to begin. My name is Linsay and I'm 25 yrs old. I was diagnosed at the age of 22. Below is the order of my story.


    May-June 2007: Went off to basic training and technical school(21yrs old). June to July time frame i notice my stomach was sore in a spot. I figured I had ran into something because I am quite clumsy.

    Sept 2007: Feel a lump in my lower abdomen. It is very small and I figure it was nothing and would go away.

    Oct-Nov 2007: Lump grew alot in size.

    Dec 2007: I finally go to the hospital because it starts hurting really bad (22yrs old). I can barely do push-ups or sit-ups and if anything hits me in teh stomach I'm doubled over in pain. I get a CT done and an ultrasound. The ER doc said he didn't see anythign although you could physically see and feel the lump. I go back to base and I get a call to come back in that he made a mistake and he sees something. He doesn't know what it is and gives mea card to a general surgeon. I decide to wait to see a doctor until I get to my new base in January 2008.

    Jan 20-08: I get an appointment with a general surgeon who believe the lump to be a fatty cyst.

    Mar 2008: The lump is removed.
    April 2008: The doctor calls me to his office and tells me it's cancer. He refers me to UNC Cancer Center, NC. I meet my oncologist and he tells me that it's a sarcoma. A synovial cell sarcoma to be exact. It is between a grade 2 and 3. I get scheduled for surgery.

    May 2008: I have surgery. The doctor was going to give me radiation, but decided against it due to it killing my ovaries. He said he was confident enough that he got it all that I would not need it unless it came back.

    I recieved quarterly check ups and scans every six months for two years. Now I see the doctor every 6 months and scans once a year. I am currently having problems getting an appointment through the military to a sarcoma specialist. They tried sending me to a hematologist. REALLY?! I'm fighting that one. They drug me away from the area I lived in and my oncologist in promise of continuing my treatment, only to be lazy about it. Anyways, it's just frustrating.

    So far I have been in remission for 3 years. I have a lump in my wrist that has started to be quite painful so I am going to go get that checked out soon. I was always told it was a ganglion cyst, but after reading these forums, I think I am on the safer side to get it checked.(So many people misdiagnosed for years) I am 25 years old and know that I will always have this in teh back of my mind for the rest of my life. I hope I never have a reoccurence.

    Synovial cell sarcoma
    Hello! It is very nice to hear you are doing so well after your diagnoses! My husband has been going through something very similar to you. He was 23 years old when he noticed a very small lump on the right side of his stomach. He thought nothing of it, and didn't go see a doctor until a few months later. It hadnt really grown much, and the first Doc he saw told him it was more than likely a lipoma. So, my husband, who didnt like doctors anyways, kept on living as normal. Shortly after he turned 24 years old, I forced him to go see another doctor, because I noticed that the tumor had grown quite a bit in the past several months. Again, after two more doctors, they BOTH thought lipoma. My husband never got around to doing a biopsy, like ONE doctor suggested. Instead, he saw yet another surgeon in the Summer of 2011, that told him this could be a Sarcoma, and she needed to remove it for biopsy ASAP. This scared the CRAP out of us, so we were in for surgery literally a week later.

    We got the phone call that it was Synovial Cell Sarcoma, and she referred us to luckily, the Sarcoma specialists that are located in our hometown, Atlanta, GA. My husband started treatment about one short month after being diagnosed. Then my husband started aggressive chemotherapy, then 6 weeks of radiation. Now we are to the point where his final surgery to remove the tumor is just a week away.

    I am so hopeful now that I have read your story. It makes me happy to see great success with this horrible, rare disease. We cannot WAIT to say that my husband has been in remission for 3 years. That seems like SO far away. We will just continue to hope and pray with everything we have!

    Thank you for your story!!

    -sara and nick
  • crazy98
    crazy98 Member Posts: 25
    franny said:

    osteosarcoma right lower femur diagnosed 96, chemo limb salvage
    This June I celebrate 15 years in remission!!! And yes I still have leg pain but hey I have my life!!

    leg pain
    How is your leg holding up now? Did you have limb salvage?
  • campsie46
    campsie46 Member Posts: 6
    10 years survivol
    Hi

    My names Krenn from Scotland. After years of a persistent lump on elbow and Docs telling me nothing to woory about I was eventually diagnosed with Synovial sarcoma. I had the whole area removed and resumed normal function of elbow. Didnt take any further treatment and 10 years later still fine. I have been worried about a swelling in back of knee which apparently can be the same thing. I am going for tests next week, fingers crossed!!!

    xxxx
  • campsie46
    campsie46 Member Posts: 6

    6 years in remission from ewing's sarcoma
    hi, my name is katy, i had ewing's sarcoma and i've been in remission for 6 years now. i'm not sure if 6 years is what you meant by long term remission...but that's where i am.

    cool
    You look fab hope you enjoy your life and was one off occasion, which Im hoping for xxx
  • campsie46
    campsie46 Member Posts: 6

    4 years
    I am just about to reach my 4 year mark in remission from Myxoid Liposarcoma. There is always a little apprehension...but lots of hope!

    Youll be fine
    Hi Babes


    Sure youll be fine this is a freak disease, we are special lol xxx
  • AKropp
    AKropp Member Posts: 1
    Sarcoma Survivor - 7 years
    I am a 7 year survivor of chondrosarcoma of the right femur. I had surgey to remove most of my femur and some surrounding soft tissue and replaced with a steel prosthesis. Other than a limp and a nice big scar I am doing great. I was treated at the University of Miami, and while not a certified sarcoma center - they are experts and saved my life!
  • Colleen28
    Colleen28 Member Posts: 1
    I am a 24 year survivor
    Hello everyone,
    Many years ago, I was diagnosed with right axillary spindle cell sarcoma. I found the tumor in 1991 and had the surgery relatively quickly thereafter. The tumor was visibly growing and, at that time, the surgeons thought I would have to have most of my rib cage replaced with artificial ones because the tumor was thought to have invaded the chest cavity. Luckily, surgeons found that although the tumor was quite large (told size of "grapefruit") it remained encapsulated. I had just finished college and must admit my ignorance of spindle cell sarcoma was my bliss. I just did not have access to information (no internet at that time) concerning spindle cell sarcoma and did not realize how scared I should have been.
    It took many months to definitively diagnose the tumor as spindle cell and I was finally diagnosed by Brigham and Women's Hospital with input from Mayo Clinic. The cancer diagnosis is something I have lived with for most of my life, and I am not sure why I never sought out survivor websites until now. I guess I had lived with the knowledge for so long pre-internet that it became almost like it happened to another person.
    The stories I read, however, broke my heart and I realize how truly fortunate I was. When I saw this thread, I wanted to write to give others hope that there are some of us, at least me, that have survived and have survived without the constant fear and worry. (again, ignorance was bliss). I have lived 24 years with few complications and have gone on to have children starting at the age of 40. I know my story is highly unusual, but my hope is that it gives someone comfort that there are "miracles" with this disease.
  • maelje
    maelje Member Posts: 1
    jblumer said:

    Sarcoma
    I was diagnosed with a sarcoma in June of 2011. The tumor was in my back and was 11 cm. After surgery, chemo and radiation I am doing much better. It has almost been one year. Every three months I get a chest CT Scan. I am very confident I can beat this disease but the scans can be scary. I would like to hear other stories to give me hope. My cancer was a stage III and was treated in Pittsburgh.

    3 years and counting
    I was diagnosed with myxoid liposarcoma in my right hamstring in August 2009. I had radiation to that site in September and October 2009, followed by surgery in November. I did absolutely fine till September 2013, when more cancer -- same kind -- was found in my scalp, left chest wall, several vertebrae and right hipbone. After six months of therapies that included chemotheraphy (ifosfamide/doxirubicin) and conventional radiation, all tumors were eradicated except the one in the left chest wall. I had Cyberknife, three treatments, to that area. I got results of scan this morning: That tumor has shrunk by 1/3 to 1/2 of its previous volume.

    Unfortunately, the scans also showed two new spots in my right rib cage near my spine. However, these tumors are very small -- about one centimeter each. My radiation oncologist is consulting with his team but thinks these can be treated with Cyberknife. Fortunately, they are much smaller than any of the other tumors I've had.

    So it's been three years since my initial diagnosis, and unfortunately the cancer recurred in September of last year and I have these new spots, but my doctors are still quite positive. In my case, they say, this is clearly a chronic disease but so far we are finding ways to deal with it. I would love to go into remission but if that's not realistic, then I hope to have many more years and good quality of life.
  • wwwsanti
    wwwsanti Member Posts: 1
    40 YEARS EWING SARCOMA SURVIVOR AND STILL GOING

    GO IT AT 17, SURGERY RADIATION AND QUIMO AT 17, 18 YEARS OLD

    3 LUNG METASTASIS 20 YEARS LATER, HAVE 2 SURGERYS NO RAD, NO QUIMO,

    10 YEAR LATER ANOTHER LUNG METASTASIS HAVE SURGERY NO RAD, NO QUIMO,

    CLEAN CAT LAST 3 YEARS.
  • barb321123
    barb321123 Member Posts: 1
    ronny said:

    metasis to lungs
    Hi, After my first treatment in 1999, the Ewings came back in my lungs in 2003. I had chemo and surgery to remove the spots on my lungs. On the ct scan it showed 8 spots, during surgery they found only 3. 2 were dead from chemo and there was 1 live by my heart. Then in 2006 it returned again the chemo no longer worked. My Dr. in MI sent me to San Antonio to meet with Dr. Anthony Tolcher about starting a new clinical trial called amg 479. I had some lympe nodes involved and spots on the lungs. They started treatment and in 8 days the tumors shrank by 60%. After 8 weeks the pet scan went silent. I still fly to Texas every 3 weeks and get the drug. It is given in my port and has had no major sideeffects. It is a human monocolonal antibody therapy and just attacks the cancer cells. I have been on it since Dec. of 06.
    Ron

    14 year old son with ewings
    Hi im very interested in the treatment you recieved in Texaswith Dr Anthony Tolcher. you see my son was diagnosed with Ewings sarcoma on his pelvis back in October/2010 he finished his treatment 14 months after diagnosis; but his final scan proved although he has minimal activity in his pelvis bone the cancer cells metastasized to his lungs; so he was put on a different chemo to treat the lung nodules; and after 3 month of that treatment the scan proved the treatment did absolutely nothing his existing nodules grew and he got a new one as well, so the doctor sent him for 10 days of complete lung radiation a month after that he was ordered a chest ct which proved the nodules had decreased by 50% but the doctor wants to continue to give him the same chemo which did nothing for him the past 3 months and repeat a scan n if nothing has changed then she will change his chemo to something different my son has been almost 2 years of his life into chemo and him as well as myself are both anxious to finish but theses doctors seem to be in no hurry for him to complete treatment and he was 12 when diagnosed he has missed most of his puberty stuck in a hospital bed waiting around for doctors to make a better decision but i guess there are too many patients or are simply not interested in him finishing treatment but its my son who is missing out on life cause at the end of the day when doctors go home we have to stay here at the hospital for 5 days on consecutive chemo
  • Fata79
    Fata79 Member Posts: 7

    Fibrosarcoma
    I too am a 25 yr survivor...from fibrosarcoma. Never met anyone else who had it. We are blessed

    Fibrosarcoma
    My 33 years old boyfriend is fighting fibrosarcoma since last year. Currently back after his surgery on his pelvis in october 2011,and two spots were also found in is lungs.
    Whats your story?
    What kind of treatment did you received?
  • Fata79
    Fata79 Member Posts: 7

    Fibrosarcoma
    I too am a 25 yr survivor...from fibrosarcoma. Never met anyone else who had it. We are blessed

    Fibrosarcoma
    My 33 years old boyfriend is fighting fibrosarcoma since last year. Currently back after his surgery on his pelvis in october 2011,and two spots were also found in is lungs.
    Whats your story?
    What kind of treatment did you received?
  • Fata79
    Fata79 Member Posts: 7

    Fibrosarcoma
    I too am a 25 yr survivor...from fibrosarcoma. Never met anyone else who had it. We are blessed

    Fibrosarcoma
    My 33 years old boyfriend is fighting fibrosarcoma since last year.Surgery in october 2011 on his pelvis and now back wiht two spots on his lungs.
    what s your story?
    What kind of treatment did you received?
  • cinb216
    cinb216 Member Posts: 1

    3 YEAR Survivor of Uterine Leiomyosarcoma
    I was diagnosed with ULMS following a routine hysterectomy. I had a follow up surgery to make sure nothing was left. I had no chemo or radiation. I have followed a strict program to build my immune system. So far I have had no recurrence of the disease.

    Uterine Leiomyosarcoma
    That is fantastic. It really gives me hope. I was diagnosed following a hysterectomy also and I am currently undergoing radiation treatment. After radiation I will try anti-hormone therapy because my tumor tested positive for hormone receptors. I have read a lot about following a strict diet and exercise program to build the immune system up and plan to pursue that.
  • Debrns
    Debrns Member Posts: 1
    wwwsanti said:

    40 YEARS EWING SARCOMA SURVIVOR AND STILL GOING

    GO IT AT 17, SURGERY RADIATION AND QUIMO AT 17, 18 YEARS OLD

    3 LUNG METASTASIS 20 YEARS LATER, HAVE 2 SURGERYS NO RAD, NO QUIMO,

    10 YEAR LATER ANOTHER LUNG METASTASIS HAVE SURGERY NO RAD, NO QUIMO,

    CLEAN CAT LAST 3 YEARS.

    Undifferentiated Sarcoma
    I have been diagnosed with High Grade Pleomorpic Undifferentiated Sarcoma. In July i had surgery to remove most of the left hamstring muscle as the tumor was growing within and very closely to the sciatic nerve. The final size was 10cm x 12cm x 17cm
    I did a total of 38 Radiation sessions and then did a CT scan only to find that although the leg area was clean there are multiple pulmonary masses present in my lungs and three being large 13mm, 16mm, and 22mm ... i have started a range of Chemo sessions and the last being in December 12, i will then have to go for a CT Scan again. Being 48 years old i am mature enough to handle the negative and positive of this disease. In saying this i have searched the net for answers and can’t find links of forums that can answer the following questions, i guess i would like to invite anyone who can answer the following questions to respond.
    I would like to get answers on statistics;
    How often does the chemo work?
    What is the prognoses if it does not work? (my doc says 6mnts)
    How many survivors got the cancer back?
  • Abbysgram
    Abbysgram Member Posts: 3

    breast angiosarcoma survivor 1 yr.
    secondary breast angiosarcoma. caused by radiation for breast cancer. rare. did chemo, had surgery. doing good. hope to be a long term survivor.

    Currently in treatment...
    Diagnosed in the year 2012 had mastectomy in july. Just had last of 6 round of doxil..next month will start radiation therapy...i believe this is a new idea in treatment..as it is thought to prevent reocurrance locally. I am wondering where you had treatment and how you are doing now.
    Thank you
  • Abbysgram
    Abbysgram Member Posts: 3

    breast angiosarcoma survivor 1 yr.
    secondary breast angiosarcoma. caused by radiation for breast cancer. rare. did chemo, had surgery. doing good. hope to be a long term survivor.

    Currently in treatment...
    Diagnosed in the year 2012 had mastectomy in july. Just had last of 6 round of doxil..next month will start radiation therapy...i believe this is a new idea in treatment..as it is thought to prevent reocurrance locally. I am wondering where you had treatment and how you are doing now.
    Thank you