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New here and newly diagnosed with Synovial Sarcoma


#1

Hi all-

I was just diagnosed last month with Synovial Sarcoma. I found a lump in my left arm in February after I had some pain in the area (Felt like a sore muscle). Finally, I was referred to an orthopedic doctor (he was my 5th doctor), who decided to take out the lump but thought it was a benign soft tissue tumor the end of June. During my surgery, a frozen cross-sectional biopsy was done and it showed the mass to be benign. Unfortunately, I got the call a week and a half later that full pathology showed it was malignant - Synovial Sarcoma. I had a second surgery to take out margins July 17th - thankfully all of the samples came back clear. I have been diagnosed as Stage IIa.

I just met with radiation and medical oncology last week here - they are recommending 6.5 weeks of radiation every weekday, and are NOT recommending chemotherapy.

I have a second opinion this Thursday with Sloan Kettering in NYC. I am very hopeful that they will also agree with the treatment path recommendation.

Does anyone have any other advice or recommendations? I really appreciate it and thank you for welcoming me to this group.

Thank you!


#2

Welcome to the club that nobody wants to join. :-/ It sounds like you are doing the right thing by getting a second opinion at a sarcoma center. They will likely tell you the same thing, but may have a more cutting edge way to do the radiation. It sounds like you could beat this thing! My advice as someone who had a late recurrence (13 years later) is to talk to your Dr about following you for longer than five years. At least getting a scan every 2-3 years after that 5 year mark will ensure that if the sneaky bugger does try to come back, you will catch it early. All the best to you!

Sheryl


#3

I concur with Caelan's grandma. You are handling this the wise way. Good luck with the treatment!


#4

Bonne chance à vous. Ici en Belgique, cette tumeur est mal connue et mon docteur aussi orthopédiste oncologie est très actif en milieu universitaire. Je crois en lui.
Courage et espoir surtout.


#5

Hi Starry!
I think it’s awesome that your doctoradiation e not recommending chemotherapy. Radiation is not so bad. You lose energy about midway through (basically take frequent naps) then experience a “sunburn” which becomes painful to touch but your doctor can Rx topical creams for the area or creams with silver used for burn victims. The radiation will leave your arm discolored and stiff (my brother calls it “cooking” he did 10 weeks of radiation behind his right ear 16 years ago and is doing just fine. I did 5 weeks on my right knee last year still stiff but I can walk without a cane). Avoid antioxidants during radiation until about 2-3 months after your last “zap”. I juiced a lot so I can continue to keep up with our six children but my surgery was intense and kept me in bed/wheelchair for 3 1/2 months.
Positive thoughts are key and the staff at the radiation office were amazing and so were the other patients. We had a blast and I loved showing them my “happy dance” when it was my turn.
sending prayers your way. Good luck!
~J


#6

Thank you all for your support!

So, I had my second opinion at SK Thursday and their analysis of the pathology/file is that the tumor was actually approximately 6.5 cm (my tumor was removed in fragments for some reason and each measure separately - I was told 2.3 cm locally) and are recommending radiation and now chemotherapy. Does anyone have any advice? I am trying to get in touch with both the surgeon and the medical oncologist who I met with locally to try to get a consensus on the tumor size, as you know it is paramount with treatment and everything else.

Thank you!


#7

Was the tumor sent on slides at SK? If that's so then it was send in 2D pieces while it was removed as a 3D piece which could explain the difference in size, may be? I am not sure what the conventional way to measure actually is. In statistical studies, they always talk about size in cm when a tumor should really be measured in square cm...Either way, it really doesn't matter what the stats say because they cannot predict what will happen to your individual case. You're given 2 options which is great in a way. You can pick the one you are the most comfortable with. It requires some soul searching of course. You may want to get a 3rd opinion to help with the decision. You also have to consider all the possible outcomes to try to figure out which decision you may regret later. Also, where do you want to be treated? You should really follow the opinion of the people who will treat you...


#8

Hi Elodie,

Yes it was sent on slides to SK -- I am thinking of getting a third opinion at Dana Farber and hopefully can come to a better conclusion after that.

Thank you!


#9

Good way to go! Dana Farber has an excellent reputation for sarcoma :-)

Starry1982 said:

Hi Elodie,

Yes it was sent on slides to SK -- I am thinking of getting a third opinion at Dana Farber and hopefully can come to a better conclusion after that.

Thank you!


#10

Hi Starry!

Your story sounds a lot like mine but my tumor was in my leg. Mine measured in at 4.5cm and was taken out in one piece still connected to a nerve it had wrapped around even though they thought it was benign at the time. My oncologist at Loyola Chicago suggested just 8wks of radiation and then close monitoring but did give me the "option" of chemo. He explained that usually once the tumor is 5cms there would be no option- it would be chemo and radiation so my case was very borderline. At the time I didn't even THINK to get a second opinion because I was with an HMO and it took a lot to pressure them into paying for me to see a specialist outside of our plan in the first place. If I had it to do over again, I would've been more aggressive even though things worked out well for me.

In the end, we chose to only do the radiation. It was a huge leap of faith for us at the time and I worried I'd regret the decision if I had a reoccurrence. Thankfully, I did not. I am now 8.5yrs cancer free. I had the radiation and then had scans every 3 months for three years, six months for two and now once a year for the rest of my life. I'm glad you are going for a third opinion. Keep us updated and feel free to msg me with any questions.

Good luck!

Emily


#11

My understanding from the research I've done on my own, SS is a "cut it out" cancer for the best prognosis. I'm doing chemo to try to shrink the SS so we have clear margins, not as a way to cure this cancer. If the surgeons are confident they've successfully removed the SS with clear margins, I'm not sure what the chemo is for. I'm assuming you've had a PET to rule out other sites?

I'm happy you caught this and have had it removed....that's excellent news!


#12

We got about 10 "2nd " opinions from different hospitals. It doesn't make it any easier. Our sons SS came back last year in his lungs after 2 years and 3 months.(first diagnosis stage 3) He is now on pazopanib already for over a year and doing great. Follow your own instincts, and stay positive! Thats a big thing in our family, staying positive. It a really good thing they got is so early!! Good luck


#13

my daughter also has recently been told she has Synovial Sarcoma, they found the tumor in her nerve in her right elbow. On Monday she is having all her scans and xrays done. Afterwards her cancer team will speak to her treatment. I do know they will be performing another surgery to remove all tissue that has cancer cells and removing her nerve leaving her right have at 20% operable, only her thumb and index she can move. What will we expect? Do you have any advice. She is only 38, 2 sons, and scared.