Too many decisions, which is the right one?


Exactly 1 month ago on May 16 I had a 6 and a half hour surgery to remove a 4.5 cm tumor removed from my right ankle and extend my achilles tendon. They went into the surgery thinking it was benign, hoping to remove the whole mass, but it was so tangled in there, it was literally latched to my nerves and joints/muscles. Basically, all they could do was a large biopsy and a little loosening of my achilles tendon (I couldn't bend my ankle to a 90 degree angle for almost 2 years, so that's why). After it was sent to a pathologist, they found out it was agressive synovial sarcoma. It couldn't be removed with negative margins because my nerves would've been damaged. A couple of weeks later we found 4 small tumors in my lungs, the biggest being 4mm. After trying to find more information on this website, I just got more confused. For my ankle, my options are radiation (rad), or a below-knee amputation. After speaking to the radiation team at Sick Kids where I am treated, I don't feel like rad is worth it. But, I'm not sure. If anyone has any experience with rad near the joints, please tell me your experience. Did it cause a lot of stiffness? Was the joint functional after? Also, I was told that it kills the cells that rebuild your bones. Which basically means, since the foot/ankle area is constantly under pressure, it will eventually fracture. Was anybody else told this? If I go with amputation, I will have a fully functioning leg, but of course, a quarter of it will be fake. It will be a below knee amputation. This will guarantee the tumor won't recur locally, but do I have any other effective options? Anybody know any effective clinical trials? Is rad worth a try? Please, I need help.

Also, has anybody else had spreading of SS to the lungs? And if you did, what did you do to treat it and what worked/didn't work. Chemo options are doxorubicin oral pills, or doxorubicin and ifosfamide together, or a clinical trial drug called sutent, which would control the size of my tumors and hopefully stop them from growing. Which do you think is more effective? Or have any of you had experience with these drugs? I hope to hear back from some people soon, and thank you in advance.


In 8/09 my son had ss in his right forearm which had his ulna nerve involved (was like 10 cm). we did the doxi and ifos and radiation prior to surgery it had shrunk the tumor and they were able to remove it with clear margins and no damage to the nerve jusst had to remove a lot of his muscle. We had 4 good months and then they found it in his left lung had that removed in 6/10. It then came back in both lungs did clinical study that did not work. We then had surgery on his left lung again in 6/11 and then surgery on his right lung 8/11. at the his post op visit which we had a scan and it had came back. So we started a new clinical trial study for a few months but the side effects were horrible....rash on his head, face, chest and back...mouth sores that you would not believe...he was unable to eat or drink he lost alot of weight and then his tumors grew and now we are on ifos and mesna which responed well to the chemo. good luck in what you decide to do keep us informed as well


One time my prosthetist organized a barbecue for his customers and I had the opportunity to meet a lady who had a sarcoma when she was a kid in the 70s. At the time, she received a lot of radiation to her leg so her doctors were able to save the leg. When she grew though, her leg failed to grow. They had to do surgery on her other leg to shorten it so both legs would be the same size. Her radiated leg was always causing her trouble. It was not functioning very well probably because the nerves were damaged. Eventually, she did get a fracture on the radiated leg and she ended up getting amputated. She told me amputation would have been a wiser choice from the start...

With an amputation, you don't have to worry about a recurrence at the original site. It can be important if the nodules in the lung can be removed surgically. They won't do surgery on the lungs if you still have a tumor in the foot. But if you get an amputation and in the meantime, the lung nodules do not grow much, could they remove them surgically? I had my first lung mets in 2007. I've had 5 lung surgeries so far and I am still alive.


Will your choice of amputation versus radiation affect the options regarding chemo? Most sutent trials are combined with radiotherapy in the clinicaltrial.gov list...


Excellent post Sarah.

On a side note, it's pretty cool that this post has been seen 24 times already. You're helping more people than you think by writing this!


My main tumor is located in my chest so I can't relate to your leg questions but my tumor did spread to the lining of my lungs so here's my experience w/ that issue and hopefully it'll answer some of your questions. After my initial diagnosis of a large synovial sarcoma located in my chest in April 2011, I was put on Adriamycin chemo but after 4 months we found that the tumor had spread to the lining of my lungs and there were 2 small tumors on my left lung and 1 on my right. We immediately switched treatment to ifosfamide chemo and the smaller tumors had completely disappeared w/in 3 treatments! I'm still on ifos. to this day b/c the larger tumor is being stubborn but I had good luck w/ the smaller tumors and count my blessings that the treatment worked as well as it did.

I wouldn't expect them to try radiation on the lungs b/c it's so incredibly damaging to the tissue. I had 2 quick bursts of radiation focused on my main tumor just after diagnosis b/c I was so symptomatic but it did do some damage to the surrounding tissues and now I have some scar tissue on the lining of my lung which will probably be permanent.

I hope this helps! I know everyone responds differently so there's no telling if you would have similar results but I'm sending you the best of wishes!


Thank you for all your advice and for sharing everyone. Hopefully I'll get more responses. It does seem like amputation would be the wisest approach. Elodie, thank you so much for sharing that story, it was really helpful. And Joe's mom, I hope your son is doing good and will recover soon. He's going through a lot so it's great to hear he's still going. My doctors are strongly recommending the amputation, mainly for the fact that going through all the trouble of rad and more surgery wouldn't be worth it in the end, with the nerve damage and also the mobility of my foot. I just recently had my cast taken off and the entire bottom part at the back of my foot is totally numb, and I can't bend my foot very much, but thankfully I can put it flat on the ground, which I haven't been able to do in almost 2 years. I'm even walking around without the splint on sometimes. But I guess I'm just really scared to give in to amp and think that I made the wrong decision.

Also, I don't think it'll effect the chemo options that much, seeing as my doctors are anticipating that I'll go with amputation and they brought sutent up. We didn't talk much about removing the lung nodules but I am going to have a word with both my surgeon and oncologist about it on the 25th because I'm meeting them both then. Also, thank you Scott, I hope I'll be able to help people in return to the help they've given me on here.

If anyone has any more responses or suggestions or advice, please reply below, it's greatly apprecitated.


I was diagnosed with SS in right thigh, which was removed surgically and treatment was followed by Radiation therapy. My Doctor explained me the risk of bone becoming fracture prone after few years because of radiation. My disease recurred in right thigh within few months of treatment with metastasis to lungs. Again surgery was performed and six cycles of Chemo with Adiacin and Ifosfamide was given. Two months ago Thoracic surgeons removed ten mets from both lungs with largest measuring aroun 9mm.

In your case as disease has already spread to lungs amputation is not not likely to control the disease. As per my experience, Chemo and if possible with surgery of lungs(only if, primary site disease is controlled) seems to be best option for you.


Amputation doesn't prevent metastases but it does insure local control. It's easier to deal with mets when you don't have to worry about the primary site. In addition, one has to consider limb function. A prosthetic foot would be better than a poorly working foot... I had an above-the-knee amputation and despite my successive lung mets, I never regretted my choice.

Regarding chemo, my gut feeling tells me ifosfamide before amputation would be safer. Just in case, the mets in the lungs are very active and to make sure the surgery doesn't trigger more rapid growth. Sutent is not as aggressive as ifosfamide.


Elodie, you have a really good and reasonable point. I think I'd rather try some sort of chemo/trial before amputation.

My options for chemo are 1. a doxorubicin oral pill, 2. doxorubicin and ifosfamide mixture, or 3. sutent or maybe pazopanib if I bring it up to my oncologist.

I asked my oncologist which was more effective; doxo oral pill vs. doxo & ifo mix, and she said there was no proof of which was more effective. Does anybody have any experience with that, as in what was more effective for which do you think is more advisable? I'm leaning more towards trying a few cycles of the oral pill, and seeing how that works out. If it works out good, that's great, but if not, I could try the ifo with doxo.

After reading the side effects of all these chemo drugs, I feel sick to my stomach. It seems so stupid to treat such an agressive, toxic disease with an agressive toxic medicine. But it doesn't seem like there's much else on the table.


Is doxorubicin oral pill doxil? This pill targets more specifically the skin:


If you want to bet on a cure even though the odds are poor, you should pick doxorubicin + ifosfamide. This is the standard and synovial sarcoma is known to be particularly sensitive to ifosfamide. Read this article:


If you want quality of life and accept to live with the disease for as long as it lets you, then the other chemos will do...


I sent my case over to my cousin in San Diego who is a nurse so that he could show it to some oncologists there in America. An oncologist in San Diego referred him to Memorial Sloan Kettering Hospital in New York, one of the best cancer centers in the world. They also have one of the best soft-tissue sarcoma research centers there as well. I've been told to do induction chemotherapy a.s.a.p. then another surgery in my ankle to remove the base of my tumor, MRI guided, and then another surgery to remove the tumors in my lungs, and then continue with chemo with hopes of keeping me in remission. How does this sound to you? I'm really upset my hospital hasn't given me such options. I feel like these are more proactive. Although they sound a lot more agressive than the options I was given here, they do seem to have more experience. Any input?


Hi sarah, good luck with all your decisions , it does become more clear and less scary overtime. Try to sort out what’s important and what’s just noise. Many of us have had major surgery and you overcome the disabilities that are created from them.


My SS was in my shoulder/neck region. It was the size of a large orange. I had surgery first, but it was entangled in so many nerves that they had to be cut in order to ensure 100% removal. i suffer from nerve damage in my left arm, hand and fingers. I don’t sweat on the left side and my left eye droops and the pupil is smaller now. I then did 33 treatments of radiation combined with ifosimide and mesna. My chemo was given every 12hrs over a 5 day period every 3 week. I was also given a dose of adrymiacin. I had a total of 6 treatments (61 doses all together). I know get chest CT every 4 months. it has been almost a year and a half of no cancer. everyones treatment is a bit different, but ifosimide seems to b the most effective. good luck and my prayers are with you.


Thank you all for your amazing advice, guidance, stories, and support. Go here to see my conclusions so far, as a lot of things have changed since this post: http://www.synovialsarcomasurvivors.org/forum/topics/final-decisions-urgent

All of you have a place in my heart, I wish you all the best. You are all amazing people. Stay Strong and Fight On :)