LONG TERM SARCOMA SURVIVORS WANTED

skull base sarcoma
I have been moved to join this society having read the relatively large number afflicted with a chrondosarcoma. Their stories resonate clearly with me and I can understand only too clearly the fear and despair experienced. I hope my own story might give anyone long term hope.
Let me start by telling you that I am due to see the consultant next Wednesday when I expect to be given a date for surgery followed by radiography / proton beam treatment. However!!!!!!
My own case dates back to 1990 when 1 was approaching 45 years old. After a period in hospital I was diagnosed with what I now know to be chrondosarcosa. I underwent a 14 hour operation by two brilliant surgeons who it turns out were at the cutting edge of this procedure. Since then I have undergone MRI scans on an annual basis. Till the last one earlier this year I have come away with a clean bill of health, that is 21 years since the original operation. I have seen my two children grow up and pass into adulthood, they are 34 and 32 now. I've even drawn my pension.
I hope this may give you hope at what for me once again a pretty awful time. Remember there are many people rooting for you. Stay strong

18 months
I'm not a "long term" survivor yet. I was diagnosed with a Malignant Fibrosis Histiocitoma in my right thigh two years ago.
Went to MD Anderson. Got chemo, radiation, and surgery. Still getting checkups every three months. So far, so good.

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.

anitakeith said:

spread to lungs - chemo working so far
Tried to reply earlier, new to this, will try again:
Husband had sarcoma size of a rugby ball removed from thigh november 2008, spread to lungs & groin. Had 6 rounds of chemo, two different drugs on a trial, will get you the names if you need them, finished chemo april 2009, had clear lung & groin scans since. Had 30 radiotherapy sessions to thigh, still fine. Developed brain tumour (assume sarcoma) october 2009, had 12 radiotherapy sessions to brain, think it has worked as had lost use of left leg & arm which led to brain tumour diagnosis (lungs still clear!) and can now walk & use arm well.
Press for some chemo, ask to go on a trial. We are in UK.

memorial sloan kettering cancer center
First, i am very sorry to hear about your husband. Never give up!
I know it's far away but Memorial Sloan Kettering Cancer center in New York City, USA has an amazing sarcoma team and are actively conducting research in this area. While getting treatment there I met many people who traveled from all over the world to get treatment there. If you need a place to stay, Ronald McDonald House is 5 blocks away which is where I stayed during treatment. I met people who lived there 6 months or a year for free. I know it's far but isn't it worth it to get optimal treatment and save your life?

sarcoma veteran
Hi there, Good news! There is life after sarcomas. I was diagnosed 16 years ago with a fibrosarcoma- not good! I was told I had about 2 years to live. Whatever!Two years did not work with my schedule. I was engaged to be married and had a lot I wanted to accomplish. Chemo, radiation, and surgery did the trick. Cured- for 3 years Then.....right before my daughter's first birthday I started having another pain, this time in my jaw. On my birthday, I was diagnosed with an ostersarcoma. At first they thought it was a met, but later concluded that it was another primary. THat was 12 years ago. Since then, I have been living free of cancer!

Hope that puts some giddy-up in your step

DeniceH said:

Pleomorphic Liposarcoma
2 year survivor! Yayayay!!

Hope
Thank you Denise!!! I have been looking for anyone who has survived a pleomorphic liposarcoma with just surgery and radiation. I had a radical resection of my shoulder where the tumor was located, and now radiation for 7 wks. (Tumor was 5.2cm and very aggressive, and high grade, also told was stage 3) CT has not shown the cancer anywhere else, yet. My GP doctor is pushing me to get chemo.....but there is no evidence it will work. Possibly, a 0 to 12% better chance for survival. I had decided to nix the chemo, until she talked to me. I am soooooo Happy for You!!!! Please keep me posted.

jjb2497 said:

malignant fibrous histiocytoma
I have malignant fibrous histiocytoma MFH. Does anyone else have that type of Sarcoma. I was diagnosed about 7 months ago. Had 2 surgeries and 30 radiation treatments. Now I go every 3 months for an MRI and CAT scan at Seattle Cancer Care Alliance. Occurence was the upper right thigh.

MFH of shoulder
My husband was diagnosed with stage 3 high grade MFH in his lateral deltoid July 2010. Following limb sparing surgury at UCLA by a sarcoma team and 33 radiation treatments, he participated in a clinical trial at Columbia University where he took valproic acid for 6 months with the intension of turning any high grade cells to low grade. Valproic acid is normally given as an anti seizure medication and very easily tolerated. My husband had no problems or side effects on the medication and continued his highly demanding job. We live in California, regular trips to New York were not originally accepted by our insurance, but we paid out of pocket, petitioned the company, they reversed their decision and repaid us.
Every 3 months he has CT of chest and MRI of shoulder, every 6 months he has PET of pelvic region. We are 18+ months out now and no signs of recurrance.
I would be happy to share more deatils if you are interested.

Long Term Survivors
Hi My name is Peter Branker and I am from Northern Ireland. I am 40 years of age and have had both Rhadoymia Sarcoma and Synovial Sarcoma. Apologies for any spelling errors. I first was diagnosed with Rhadoymia Sarcoma when I was 13 and had Chemo every 3 weeks for 2 1/2 years. I also had Radiotherapy which had to be directed through my eye and as a result I now have had my eye removed and currently wear a painted lense. Thankfully the treatment was successful and I never had any further treatment relating to this cancer.

When I was 18 I also was diagnosed with Synovial Sarcoma and had to have my left leg amputated below the knee but no other treatment.

Although I have some problems with small areas of my face now which I have to look after as a result of the radiotherapy I have had no treatment for 22 years approximately so I have to say I can't be any happier.

If you would like to know anything more about my battle with cancer please feel free to send me a message as I would be only too willing to chat.

Hope all is well with you.

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.

MPNST Survivor - almost 3 years
I'm not sure 3 years counts as long term - but I think my story is a good one and am happy to connect with anyone else out there newly diagnosed or with a longer term perpsective. I was diagnosed with a 5cm Stage 3, high grade MPNST on my left sciatic nerve in July '09. I had a total of 24 weeks of chemo, 30 days of radiation and 2 surgeries - but I've been cancer free for 2 years and all my scans continue to be clean. I got my treatments and surgeries at U Penn and Memorial Sloan Kettering.

I lost my left sciatic nerve which has some complications of its own (loss of function from the knee down in my left leg etc) but I'm walking with the help of a great prosthetic brace and leading a more or less normal life. Best wishes to everyone else!

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.