Welcome!!!

Welcome! You're not alone.

If your family has been affected by Synovial Sarcoma, consider Synovial Sarcoma Survivors Network your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Need a Doctor or Specialist?

Need a Second Opinion?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Please Be Kind & Use Appropriate Language

 
Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter are not allowed in the Chat Room.   
5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.    
Specific doctor or hospital names in a positive context are welcome.
6. Specific doctor or hospital names in a positive context are welcome.
Thanks for your cooperation.
 

Learn More About Synovial Sarcoma

Brought to you by Patient Power.

Photos

Loading…
  • Add Photos
  • View All

Videos

  • Add Videos
  • View All

Your Community Moderators

Badge

Loading…

About

 

WHAT IS SYNOVIAL SARCOMA?

Synovial sarcoma is a malignant tumor of the soft tissues, usually around joints.

Under the microscope the tumor resembles synovial tissue (the lining tissue of joints). Synovial tissue is found around the tendons (bands of fiber that connect muscle to bone), and can form bursa (fluid filled cushioning pouches or sacs found in spaces between tendons, ligaments and bones) found in the area of joints.

This condition tends to occur in adolescents and young adults and affects more males than females. The most common location of origin is the thigh near the knee, but synovial sarcoma can also occur near other joints, mainly in the arms and legs.

Despite its name, it seldom arises within a joint.

Forum

Daughter-Lung Mets(Multiple)-Dr Rolle

Started by rray in General. Last reply by Ede 57 minutes ago. 2 Replies

Hello Everyone,My daughter has numerous lung mets and was thinking of Dr Rolle in Germany for surgery. I would like to know his reputation/details of people's experience/traveling/cost/insurance…Continue

Lung nodules

Started by Noggin in General. Last reply by Elodie Espesset 1 hour ago. 9 Replies

Will's resection took place in Jan 2013. A 10 cm circle, 4 cm deep, was removed from his left lower back, the right side had to be cut to close the left side, and his right leg was used as a donor…Continue

Successful treatment of lung nodules?

Started by mlukeuk in General. Last reply by rray 13 hours ago. 18 Replies

Hello, I am currently undergoing chemotherapy for some small lung nodules after having my primary SS removed from my foot (amputated). I am on Doxorubicin/Ifosfamide. Completed 1 of 6 cycles. (Very…Continue

places of recommended treatment?

Started by linds in General. Last reply by mylhunt 22 hours ago. 3 Replies

Hi friends. Im new to the group but not new to synovial sarcoma. I am researching for my next step in this process and would like some insight on hospitals and doctors you would recommend. I just…Continue

Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Join the Global Genes Webinar on Health Insurance Issues

Find out how you can better evaluate what option is best suited for your individual needs. Learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.

Join the  FREE Navigating Insurance Issues Webinar on April 30, 2014 at 10am PST / 1pm EST / 6pm in UKRegister Now!

For more information about the Webinar, visit this link.

Read more about Global Genes,a 501(c)3 (non profit).

Mobile App and E-Book Available!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Welcome To SynovialSarcomaSurvivors.org

If you or a loved one is affected by Synovial Sarcoma, this site is for you. Here you will find support, information, and most importantly a place to connect!

What you can do on Synovial Sarcoma Survivors:

  • Share your story on "My Page" & personalize it to reflect you.
  • Upload pictures & videos easily.
  • Start a new discussion on "Forum" or contribute to existing discussions.
  • Welcome new members with a comment on their page.

* We only offer peer-to-peer support (patients, family and friends). Unless a person states otherwise, we are not doctors.

This site is brought to you by Ben's Friends Patient Communities.

Latest Activity

Ede replied to rray's discussion Daughter-Lung Mets(Multiple)-Dr Rolle
"Pro. Rolle's Email address is: prof.rolle@fachkrankenhaus-coswig.de Mail him and ask…"
57 minutes ago

Moderator
Elodie Espesset left a comment for popey
"Happy Birthday Popey! How did the biopsy go for your son? Was it a recurrence?"
1 hour ago

Moderator
Elodie Espesset left a comment for rray
"Welcome Rray! Good luck to your daughter! Dr. Rolle does sound like a good option..."
1 hour ago
MissMya replied to rray's discussion Daughter-Lung Mets(Multiple)-Dr Rolle
"I can provide you phone numbers to people that have had his surgery. Best option! US will take away…"
1 hour ago

Moderator
Elodie Espesset left a comment for Jude
"Regarding vaccine treatments, from my knowledge, the only one that so far had some success with…"
1 hour ago
MissMya liked rray's discussion Daughter-Lung Mets(Multiple)-Dr Rolle
1 hour ago

Moderator
Elodie Espesset replied to Noggin's discussion Lung nodules
"Sorry to hear about the bad news :-( I don't have any personal experience with Moffitt but I…"
1 hour ago
Jude left a comment for Scott Orn
"Thank you.  Iam new to this and have several questions. "
2 hours ago

Top Content 

1 Alternative treatments

Alternative treatments

Posted by Michael Stangel on April 8, 2014

2 Pain in chest

Pain in chest

Posted by BobbyB89 on March 26, 2014

3 Clear scans but sore chest pain. Anyone going through similar case?

Clear scans but sore chest pain. Anyone going through similar case?

Posted by BobbyB89 on April 4, 2014

4 Lung nodules

Lung nodules

Posted by Noggin on April 4, 2014

5 places of recommended treatment?

places of recommended treatment?

Posted by linds on April 22, 2014

Blog.BensFriends.org

"Thank you!"

“Thank you!”

- a member from Synovial Sarcoma - Online Support Group

"Thanks for the welcome!"

“Thanks for the welcome!”

- a member from Synovial Sarcoma - Online Support Group

What is Best of Ben's Friends?

Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.

 

 
 
 

Help Ben's Friends

Like, Follow & Forward Us!

Follow Me on Pinterest

Help Us Help Others

To Support SynovialSarcomaSurvivors.org, Click an Ad. Or Two.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Join Ben's Friends

Blog Posts

Bevacizumab and AZD2171 (cediranib), Phase 1 trial Results

Posted by Elodie Espesset on April 23, 2014 at 10:38am 0 Comments

One patient with synovial sarcoma experienced partial remission in this phase 1 trial:

http://www.ncbi.nlm.nih.gov/pubmed/24752867

Unfortunately, there's no trial open with…

Continue

Webinar on Current and Future Treatment Options for Advanced SoftTissue Sarcoma

Posted by Elodie Espesset on April 23, 2014 at 10:25am 0 Comments

Dr. Richard Riedel from the Duke Sarcoma Program will be talking about treatment options on May 20th at 1pm EDT on the web:…

Continue

Never give up.

Posted by Armando Abrero on April 20, 2014 at 4:04am 0 Comments

Just wanted to share this inspiring video.

Laugh often. Love a lot. Be strong. Never give up.…

Continue

Phase II Anti-NYESO-1 immunotherapy trial at NIH

Posted by Elodie Espesset on April 15, 2014 at 12:34pm 1 Comment

For those who are looking for a trial right now, you should check whether you may be eligible for the following:

http://www.clinicaltrials.gov/ct2/show/NCT01967823

In…

Continue

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service