Synovial Sarcoma - Online Patient Support Group

Should I do chemo?

I just had a 5.7cm mass removed from my thigh in December with clear margins. Prior to the surgery, I did 25 rounds of radiation (shrank it a bit to 5.3 cm). Currently all my CTs and X-Rays have been clear for spread. Based on everything my doctors have seen, they are on the fence with recommending chemo and basically said its my call. On one hand they know synovial has shown to be slightly responsive to chemo. On the other, I haven't showed any signs of spread to lungs or lymph. Just curious on thoughts from others who may have been in a similar situation or those that have chosen to undergo chemo post-op.

I would not go for chemo when the images are clean. Enjoy life now and as soon something Pops up you should start. Then they can also follow if the chemo works or not… . Chemo is no treat… Safe it for when its necessary…

The potential benefit of chemo is a delay in the return of the disease assuming it's going to come back (it might not but that's unpredictable). The best way to approach this type of decision is to make a list of all possible outcome and ask yourself whether you would regret your decision in a specific contest. For example, if you do not choose chemo and your synovial sarcoma reappears in the next 2 years, will you regret not having tried chemo? What if you choose chemo, your disease doesn't come back but you get some long term side effect from chemo?

Its a personal choice nobody else can make for you and it is likely you already know what you want to do deep inside...

My wife didnt do any round of chemo yet, but my suggestion would be maybe do chemo with low doses? I know there are this kind of protocols and should be really well supported. Heidis sarcoma has resurfaced and we are looking into alternatives, but we do feel the need to start kicking this in the nuts (no other treatment performed besides surgery).


I advise you to do chemo 6 rounds of chemo so u won’t regret not doing it

I did radiotherapy and chemo hoping that it will never come back again

No chemo it does nothing for synovial you can read that all the medical papers say adjuvant. I was wondering if they recommended you amputate the leg because that is the best prognosis for this cancer but unfortunately there are no guarantees. Eat organic Gerson diet is recommended and live your life with gusto and love.

Synovial Mom

I had chemo first, surgery, then radiation. The chemo (ifex, doxi, and mesna combo) shrank the tumor in my hip 50 percent and and two spots on my lung disappeared. I had no choice since mine spread. I started the chemo March 2015.

It’s a very hard decision. I went to seek opinions from three different doctors, but it really comes down to you. Each case is different. In my case my site was my neck, I had surgery first then found out I had cancer. I went thru 35 radiation treatments and then clear scans.

I decided to not do the chemo since there was no proof it would help it not reoccur in my case.

I am thankfully now 2 years and 8 months with no reoccurrence .

I wish you the best in your decision whichever way you go . Only you will know what’s best for your body.

Synovial mom, I was wondering what research you are referring to? Docs want to start my daughter on chemo Thursday. Then do radiation. They say it’s to eradicate the micro mastatstis that is undetectable? Help

Here is an article that is very good.

The investigators found that the presence of metastases on initial presentation and tumor size exceeding 4 cm were factors associated with decreased survival.[30] They concluded that adding chemotherapy to postoperative radiotherapy does not increase survival or disease control.

I do want to say that it seems prognosis for girls seems to be better. God bless you and your daughter and with prayer you will both make it through.

Here is a trial using immuno therapy:

Don't do chemo unless things show up elsewhere. Keep yourself as healthy as possible. Once my husband started chemo his health began to fail and it only postponed the cancer from coming back but when ti did it came back twice as fast. So hold on and don't so anything until absolutely necessary. Good luck.

It couldn't be a clear and easy decision could it. I just keep seeing (and hearing) so much conflicting info on the effectiveness of chemo. I had a follow up appointment with my local oncologist yesterday. He recommended doing 5 rounds of chemo which was also seconded by doctors at MD Anderson and Vanderbilt. This was primarily due to the high rate of recurrence with synovial. That being said, all three said it would be "reasonable" if I didn't undergo chemo at this time (i.e. I'm not a crazy person refusing a last ditch effort to save myself). I guess it comes down to if I'll kick myself if it comes back soon and wish I would have done more. They all acknowledged that the point of chemo wasn't so much going to stop a recurrence but potentially delay a recurrence. My husband did point out that if this pushed out my recurrence to 5 years instead of 2 there may be new/better treatments in the market at the time. In the end, I suppose it's all a bit of a moving target with this thing. Prayers to all of you who are dealing with this as well (both personally and in a caregiver role). I still don't know where I'm going to land on this decision, but I have until Tuesday to figure it out. Thank you all for your thoughts.

Hi, I was wondering how your treatment is going? My husband had 4 rounds of chemo and he had 5 weeks of radiation Mon-Fri. He just barely had his surgery July 6th. We are waiting for his pathology test to come back that the chemo and radiation killed at least 90 percent of the cancer cells. Keep me updated on how you are doing. Hope all is well, god bless.

Thanks for your support. I’m actually a year past chemo and doing great so far. While the process was certainly not fun, I’ve had very few long term side effects outside of the common foggy brain. Radiation also killed more than 90% of my cancer pre-op, so the chemo was more proactive. I hope your husband’s prognosis continues to be favorable as well. Cancer shakes you to your core but I’ve found a lot of positive throughout the process and tried to make the best of a crummy situation. Prayers and best wishes to you as well.

My daughter now 21 was diagnosed with SS when she was 17 she had a tumor 5cm x 8cm behind her right knee they removed it with surgery and thankfully she had no loss of the use of her leg, after the operation she had 9 weeks radiation and all went well until June this year on her follow up they discovered a tumor 4.8x5.5 cm on her right lung within a week they removed her lower right lobe with clear margins, and said she must recieve chemo (MAID) four sessions at the time she was very weak and because dr was not sure if there are active cells remaining or not she chose to wait with chemo. 6 weeks later we went Monday for her follow up and the xray department gratefully made a mistake and a CT scan was done they discovered she has 4 new mets largest being 5mm we start Monday MAID chemo has anyone recieved this and what are your views on this chemo
thank you

MAID stands for Mesna, Adriamycin (aka Doxorubicin), Ifosfamide and Dacarbazine. It’s a conventional first line treatment for sarcoma. Dacarbazine is not always given in which case the combo is called AIM. I am not sure if the addition of Dacarbazine is relevant for synovial sarcoma and whether it worsen the combo side effects. I couldn’t find a study comparing the 2 regimen.
Mesna is always given with Ifosfamide to protect the kidneys.
Chemo is hard and will make her sick. But in her case, it’s worth the try. Good luck!

I will like to know how is your daughter doing after a year. My daughter has nodules on her lungs that are more likely METS. Dr. wants to wait for a third CT scan. Another Dr. wants to start Votrient right away telling me that Chemo is likely not effective. I don’t know what to do, so I am reading about patients on the site to see their experience to help me make a decision.