Synovial Sarcoma survivors wanted! Would love to hear stories!

MechelleGirl

Diagnosed at 19. Now I'm 36

I first started to complain about a pain in my navel when I was 12 years old. For years several doctors  would pass the pain off as just sensativity. My navel was so sensative that I could not shower normally. When the shower water hit my navel area, it would turn red. For years I suffered through accidental pokes in the stomach from fun-loving classmates. And, I would unconsciously protect my stomach from accidental bumps.

 

Finally when I was 19 years old. I found a doctor that finally listened. I went in to have surgery on a "hernia". He performed a biopsy, and it turned out to be synovial sarcoma.  To make matters worse... this rare cancer was located in a rare location.... my navel.  So, needless to say I promptly had surgery. It was during winter break... and two of my major concerns were.... being healthy enough to resume my classes that semester and my summer internship.  What helped me through was thinking about how sad my family would be if I was not around. I really worried less about myself and more about everyone else. I think that helped me fight through. And of course.... a lot of prayer.

Ultimately, they removed all of the cancer. I did not go through chemo or radiation. The only evidence of my cancer is my LONG smiley face on my stomach instead of a belly button. I am 36 years old and I have been cancer free for 20+ years.

 

I hope my story can serve as a source of encouragement to those that are still fighting the battle.  

 

battleforbradley

17 year old son with synovial sarcoma mets

At 16 years old my son was diagnosed with a synovial sarcoma in his right foot, he had a couple questionable spots on his lungs that were very small. He went thru 6 rounds of chemo (adriamycin and ifosfamide) and shrunk the tumor and then had a below the knee amputation in September of 2015. Needless to say it was a nightmare, the chemo was torture and recovering from an amputation was no walk in the park. But we thought there was a light at the end of the tunnel. Until...

 In November, he had a follow up CT, they found a number of spots on his lungs and now that is being treated with 2 different chemo drugs (taxotere and gemcitabine). He is doing really well and doesn't suffer any side effects from the chemo other than getting a little tired and hairloss. He is positive and happy and finishing his senior year of high school. Next week we find out if the chemo is working, they say there's a 40% chance it will. He's done 3 cycles now. If it is we continue for another 3-5 cycles and then follow with radiation. We are looking for survivors of stage 4 synovial sarcomas. I need to know there are survivors of this out there. Sometimes it feels suffocating, I just want to see him win, and be healthy. He is so strong and has grown into such a wonderful man at 17. We run on faith, hope and love. Prayers and positivity. and WE BELIEIVE!!!!

battleforbradley

gaby9 said:

Synovial sarcoma left lung

Hello, 

My name is Gabriela, I am 23 years old and was recently diagnosed with synovial sarcoma.  In December of 2012 I remember telling my family I felt a really strange feeling, when ever I would lay on my left side I would hear a sound like popping bubbles (that's the only way I can explain it) and a weird vibration on the left side of my tummy. I went to the doctor and he gave me a prescription for anti inflammatory pills, he also recommended I do an x ray to see if there was anything else going on. I never went to get that x ray because I thought to myself "Why would I possibly need an x ray". I went back for a follow up and told him I was feeling sharp chest pains and he advised I get that chest x ray.  I finally decided to go to the hospital and A few minutes after my x ray the doctor came out and told me my left lung had completely collapsed. I was then hospitalized for 5 days with a collapsed lung (pneumothorax). During my hospital stay I had numerous tests done (including scans) and the doctors did tell me that I had some old scar tissue near the left side of my lung, but that it was NOTHING to worry about.  

About two weeks later I went back to the doctor for a follow up visit where I had another chest x ray done. To my surprised my left lung was completely collapsed AGAIN. I was at a loss for words. After much deliberation I decided to go ahead and have surgery to have my lung stapled. 

I remember waking up after surgery and over hearing the doctor telling my sister they had found a tumor barely attached to the bottom left lung, but he went ahead and removed the tumor. Two weeks later I found out that the 4.3 centermeter tumor was synovial sarcoma and extremely rare. Although the tumor was removed with clear margins, the doctor first recommended I do radiation because of the aggressiveness of the cancer,but After speaking with other doctors he recommended I do 6 rounds of chemo therapy IFEX/adriamycin and mesna and radiation after. I went ahead and started my chemo April 11th and finished my last round July 28th. I started radiation August 26th and will finally be done this upcoming week. 

Never in a million years did I imagine I would be diagnosed at such a young age with such a nasty aggressive cancer. Although there are days I can't help but wonder if it'll return, I know I did all I could to prevent it. During my chemo I did not stop going to work because all my little kiddies (first graders) helped me keep my mind off everything that was going on. My job was a big part of what helped me keep sane. That and my wonderful family who stood throughout it all. I never let the cancer get the best of me and always kept a smile on my face even though there were days I felt I didn't want to keep going. I hope this is some way helps someone else. 

How are you doing now since

How are you doing now since the sarcoma treatment? Is your battle over? I pray it is. My son is fighting thru this now.

 

Valentine_smith

22 years in remission

Hello,

I was diagnosed at age 5 with synovial in my hand. Some fingers were amuptated thereby removing the tumor and then I had six rounds of chemo over 6 months. I'm about to turn 29. I was a bad remission patient and hadn't been checked out in 15 years, but I remedied that and now I visit oncologists once or twice a year for a CBC just to be sure it's gone.

What I'm finding difficult to deal with is what are probably the after effects of adriamycin and ifosfamide. I'm married, but not considering children because I think the chemo probably made me sterile. It's not the end of the world, I have many neices and little ones in my family. I was diagnosed with fibromyalgia a few years ago, and I spend more time worrying about that pain than the cancer coming back. I'm still mentally and emotionally recovering from that trauma though, 22 years later. I'm thankful that I'm here, because I was even given a Make-A-Wish, and I only learned a few years ago that those are for thw "terminally ill"... My mom says I qualified because synovial cell sarcoma can be such a scary one, but not that they actually feared for my life. I don't know that I believe that 100%, but whatever. I'm here. And I'm glad to be here.

I'm curious about how we all got this very rare cancer. We watched the documentary "Atomic States of America" (it was on netflix), and I realized I had been conceived, gestated, born and spent the first 18 months of my life 2 miles from a nuclear power plant. Has anyone else spent any significant time near nuclear power plants? They're surprisngly more common than one would think. I want to move somewhere that is at least 50 miles if not 100 miles away from any nuclear site, and that proves very difficult to satisfy.

Thank you all for sharing your stories. The more we can connect and relate, the stronger we can be and the less alone we can feel.

 

mnotor8

dan06 said:

dear scarlettaguilar,
it is very encouraging to read stories like yours. i am 25 and going through something similar. MArch last year i had a biopsy in the lump in my upper thigh. It ppeared to be benign but the surgeanon wanted to take it away all the same. however at that time i had just found out i was pregnant and so they didn't operate. i had to wait till after. by Janary this year i had to go back to the doc as the pain was increasing and the lump was growing bigger and bigger. they removed it all and found out it was in fact malignant. i then had radiotheraphy and hoped it was all over. but was not. i had more tests and seems that i have four lumps now in the same area. Just lately I got to know what tpe of cancer it is so i am reading all I can.. Now i am waiting the response from a UK surgeon (in my country we do not have specialists in this area ) and will then go there for surgey. it seems i will have to do chemo and radiation again.

i am feeling horrible and very depresed. i have been with this pain fr almost 4 years and no one realised what it was. now i have a 10 month old son and can't accept a bad prognosos.

Hi! I read everyone's

Hi! I read everyone's responses but became super interested in yours. I was wondering how you are doing now . You are the only other person I've read or heard of that had a synovial sarcoma tumor while you were pregnant. Your story is very similar to mine . I am 10 years cancer free and my doctor's are amazed by this. My tumor grew from the size of a superball to the size of a small football in my thigh while I was pregnant. I was at a stage 3 once I began my treatments with  no signs of it spreading. My doctor's said synovial sarcoma usually metastasizes when the original tumor is the size of a dime. They are still shocked I'm cancer free. They believe my hormones from my pregnancy have to do with my outcome. I was wondering if you could share how you are now and if your doctor's thought your pregnancy had any effect on how fast your tumor grew .

 

Halfpenny007

dan06 said:

dear scarlettaguilar,
it is very encouraging to read stories like yours. i am 25 and going through something similar. MArch last year i had a biopsy in the lump in my upper thigh. It ppeared to be benign but the surgeanon wanted to take it away all the same. however at that time i had just found out i was pregnant and so they didn't operate. i had to wait till after. by Janary this year i had to go back to the doc as the pain was increasing and the lump was growing bigger and bigger. they removed it all and found out it was in fact malignant. i then had radiotheraphy and hoped it was all over. but was not. i had more tests and seems that i have four lumps now in the same area. Just lately I got to know what tpe of cancer it is so i am reading all I can.. Now i am waiting the response from a UK surgeon (in my country we do not have specialists in this area ) and will then go there for surgey. it seems i will have to do chemo and radiation again.

i am feeling horrible and very depresed. i have been with this pain fr almost 4 years and no one realised what it was. now i have a 10 month old son and can't accept a bad prognosos.

How are things? pray your ok

How are things? pray your ok

Halfpenny007

synovial sarcoma

Hi

I hope everyone is doing well

I was diagnosed nearly 30 months ago at the age of 54, had a pain in my right upper arm for quite a while, went for standard xray and they found nothing suspicous. ( this is important becasue this particular cancer does seem to be able to avoid detection via normal xray) went back to doctors with a lump about 3 months later March 2014, doctor sent me to a consultant, had an ultra sound the same day, found the lump, had a biopsey within 2 days, MRI scan, told me 2 days later that it was a synovial sarcoma, grade 2 aggressive etc. sent for a CT scan, this was clear, within 7 days i was having 25 rounds of radio. the 6cm tumour was excised in July 2014 during a 2 hour operation, the pathology confirmed that the margins were clear. Cant thank UCLH and Mr Skinner enough. I am now on 6 monthly check ups. i get very anxoius leading up to my check ups. When you tell people that you have had cancer in your arm they do not take it seroiusly. i had not heard of Sarcoma before my problem. I wish everyone well for the future.

mother of 2 Carmen

pebs said:

Hi, I am a 37 year old
Hi,

I am a 37 year old female and I was diagnosed with synovial sarcoma of the left forearm 5 days before Xmas 2010. I had the tumour for 23 years and it had always stayed the same size, however the pain it caused if I even tapped it was unbearable and it used to give "electric shock" type pain. It had been diagnosed as many benign tumours such as neuroma, ganglion, glomas tumour and lypoma despite never having a biopsy done. I was told not to have it removed as it was so close to nerves that I would lose use of my arm/hand. I just took the doctors words for it.......

3 years ago despite it still not growing it became more painful and I decided to take the risks involved with surgery. It was removed and the pathology report diagnosed as a benign schwannoma. 6 months post surgery it returned and continued to grow, this time the symptoms were "different" I had involuntary twitches in my arm and the tumour was more firm. I had what was thought to be a returning schwannoma removed in Dec 2010 and then as I said recieved the bad news that it was a grade 2 synovial sarcoma. I have since had further surgery to obtain a negative margin and have just completed 30 sessions of radiotherapy. I had a full body C.T scan which showed my organs were clear and 2 subsequent chest x rays have also been clear. I see my oncologist in June for my radiotherapy follow up and all I can do now is hope that is the end of it and it does not appear again.

Best wishes to all who are goiing through the same as me.

please help guide me

Hi I am a 49 female who is really scared. I to have just gotten a diagnosis of  a synovial sarcoma. I had a lump on the bottom of my foot for over 20 years. Early trips to the doctor said it was a fibroma and not to worry, unless it hurts surgery is not advised. It did not seem to grow very fast but over time hurt if touched and after being on my feet for work it would throb at night. Fast forward to last month when it was removed and I was told it did not look like a fibroma. The only infomration I have gotten is from my podiatrist who said the location was not a common place and has a high probablility that is metastised from another location. Please tell me about how your recovery is going and if you have any information or advise.

Thanks

sugarfr

https://csn.cancer.org/discussion/comment/870940#Comment_870940

hello! I’m in a very similar situation and looking for some advice. I had a high grade large tumor in my right thigh that was synovial sarcoma. I did 3 rounds of chemo (dox and fofs), then 5 weeks of radiation and then got the tumor removed. The chemo caused tissue death of the tumor and the radiation further reduced it. I’m now a couple months post surgery and even more months post chemo and finally feel like myself again. My hair has grown back to a cute short length, I have my strength and the changes to my body from chemo are just about gone. I’m meant to return to work 2 months time and I had a meeting with my oncologist where he essentially asked how I feel about 2 more rounds of chemo. He said there is limited info but there’s one central paper that indicates there is no additional benefit from doing extra chemo. I’m reading multiple research papers and I’m a medical provider myself (no focus in oncology though) and it really seems like a controversial decision on whether additional chemo is needed because sarcoma is rare and too many types of sarcoma, age groups and risk levels are grouped together. I’m trying to decide if I should do the extra chemo or not. Summer is coming up and so is my birthday and I don’t want to lose my hair again and be sick. I’m a really social person and I hated being cooped up because I was neutropenic during chemo. Is it worth it to sacrifice my quality of life for a little while when there isn’t even proven benefit to additional chemo?