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Synovial Sarcoma - Online Support Group

Are there any other young children out there?


#41

Thank you Elodie, I will be waiting for the second scan. It is very difficult seeing all the post here of people battling this monster cancer.


#42

Zam, it will be good to know how big and how many nodules your husband scan showed. There are no statistics that I could find online about nodule count/size vs potential for methastases. There was a large study for lung cancer and nodule sizes but that is a completely different monster. In my case since my daughter never had any disease to the lungs before I can’t see any valid explanation for having so many nodules show up on her first scan.


#43

Hi Sarah2, I have not seen any more postings from you. My daughter is also 14 and was diagnosed with with a SS in the right ankle as well. How are you doing? WIll be interesting to have more information on your case


#44

You are correct, why didn’t the doctors react differently in my husband’s case? I look back now and realize how uneducated we were. After the second scan, he still did not have an official diagnosis, yet he was not symptomatic, so they were going to wait three months and do a repeat scan. It was six weeks after the second scan that he started coughing up blood. At one point, they thought he had MEST after removing a tumor on his kidney and that he was "healed! " It wasn’t until 4 months later, they officially diagnosed him with the synovial sarcoma. I do believe we had a very unusual situation, but when I hear of nodules in lungs, I become on high alert! I don’t want anyone to experience what we did.

I am sure Ricky will have a much better understanding and plan with the doctors after the September scan!


#45

Hi Ricky,

I just went back and pulled medical information. His original scan in October/2015 showed 7-8 nodules. Some were .08cm, .05cm. I am reading the scan report from 2/26/2016 which make reference to the October nodules. I don’t have the report from 10/15 in front of me so I can’t be more accurate in measurements. I can tell you that his scan on 1/12/2016 showed an increase in bilateral nodules. At this point, they still decided to watch him and do a follow-up scan in April. He started coughing up blood on 2/25/2016. They gave him an emergency scan on 2/26/2016. The report I am reading shows new masses measuring 1.1cm, 3cm, 4cm, 5cm, 2.1x 1.9, All of the previous nodules had grown as well as new nodules. The scan said " there are multiple additional scattered small sub centimeter nodule’s bilaterally." I hope this helps! I keep thinking about you and understanding the terror you are feeling. Please stay in touch and keep us posted!


#46

O my God, your husband when from very tiny nodules in October up to 5cm in 4 months. This is very very scary for me now. I appreciate you digging the information and helping so much. This is eye opening for me.


#47

Please try not to panic, Ricky, although I realize that’s nearly impossible. Every person and every situation is different. My husband had a very unique and rare situation. Two hospitals in Maine and three in Mass helped to make the diagnosis and treatment plan. It was very tricky.

I am only sharing this information with you because I wish I had known about this group back when he was first diagnosed. I could have gleaned a lot of information. I wish I had known that it was okay to seek another opinion, push a little further, and insist on things I felt in my gut. Just remember that because it happened to someone else, does not mean it will happen to your daughter. Praying she has an amazing outcome with NO further growth!!!


#48

I understand but I feel I am going to be scared for a long time with this. Thank you for taking your time to try to help me during this difficult time.


#49

Of course you are going to be scared! I can’t deny, that is probably something you will live with for the rest of your life. This path is like no other. It is not easy, but you’re not alone.

If I can help one person in their journey, then I will be happy. If I can help in any other way, please let me know. Please, we all care-don’t forget to keep us up to date!


#50

Ricky, you may want to read this article:


#51

Thank you Elodie! Just read it. Very good information. Pretty much if more nodules appear on the next scan is going to be very bad. On this study 9/10 people that had more nodules on follow up scans had METs.


#52

Good article! Still following this. Ricky, when is the next scan? September?


#53

Mid September. Praying to God that is not Mets


#54

Praying with you!! Update, please!!


#55

I’m sorry to hear about your daughter, my son was 16 when he was diagnosed with a tumor in his right foot, and 2 tiny spots on his lung, which yes we learned later were mets. You can see Brad’s story on my page. I am so sorry you’re forced to fight. God be with you. We are trying desperately to find a miracle as time is running out fast for Brad.


#56

I am very sorry for your son. I can only imagine the pain you are going thru. I want a miracle for all the people suffering from this disease. My daughter had 8 tiny spots so I am scared that Chemo will not do anything for her lungs either.


#57

Ricky, I’ve been thinking about you and your situation. Any updates?


#58

Hi, thanks for inquiring. Unfortunately the nodules are still there after second scan. I was hoping it was a fluke. The only good thing is that there did not seem to grow between scans but her cancer was slow growing. I am still praying for a miracle to save my baby. Will continue scanning every 6 weeks.


#59

Hi Ricky, was reading your posts. Is that your daughter having SS? My son ten year is diagnosed last month. He’s grade 2, in his neck. Surgery over and now doing RT . Two more weeks left to complete RT
How’s your daughter now? What was her grade at the time of diagnosis. How many years since she’s diagnosed?


#60

hi, I’m a ASPS patient ( Alveolar soft part sarcoma), I think it can be treat with natural therapy. If you come from USA, please search for Chris ward and Square One Program. It could be helpful.