Final Decisions, *URGENT* Edit: Concluded, see final comments

Symptoms and Treatments Amputation
1

Hello, just wanna say thank you in advance for reading this post.

Okay, so I was officially diagnosed with synovial sarcoma on March 7th 2012 in my right ankle after having severe pain and stiffness, to the point where I couldn't put my right foot flat on the ground anymore, since about 2010-2011. My doctor finally decided to get me an MRI after nothing showed on X-Rays, and I wasn't achieving results from physio. I did the MRI, then another MRI with contrast, and that's when they found my 5 cubic cm tumor. I don't know who, but somewhere along the way before I got the results of the MRI, one doctor diagnosed it as synovial sarcoma, and that's what I was told I had on March 7. I was referred to Sick Kid's Hospital, and went in for surgery on May 16. It was difficult for them to get negative margins because of how tangled in the tumor was around my nerves and joints, but they did, but of course the area isn't completely clean. After the surgery, my surgeon said he had a good idea it was actually benign, up until 2 days later when we got the pathologist report. It was confirmed synovial sarcoma at that point. Next step was to check my lungs for spots. They found 4 spots, but they were all under 4 mm, so we did a biopsy, and it came back benign. That was a huge relief. Prior to the biopsy we were convinced it was malignant, so I had planned to do chemo and go from there. But things have changed now. There is no metastasis that we know of, so now we need to worry about my leg.

My doctor wants me to amputate asap. Although I know this wouldn't certainly stop metastasis later on, I know it's important to control the primary site, and that could definitely put the odds in my favour. But I am scared. I don't want to make the wrong decision. I am only in my first year of Highschool right now, and I don't know how things will turn out, but it's all pending on this amputation. Does anyone have advice, please? Should I go ahead with a below-knee amputation? With or without chemo? Or should I just do chemo alone? I'm leaning away from radiation because it just seems like it's not worth it if it can still come back. If anyone has experience with this, PLEASE reply. In the end, I want to do what will make my life longer, but I don't want to suffer with the wrong decision. If there is something else I can do that will be effective, other than amputation, I'll do it. Please help everyone, and I hope you're all staying strong.

P.S. If it does come down to it, and it will help me live a long life, I will do the amputation. I'm okay if it comes down to that. But, if there is away I can avoid it, but just as effectively live a long life, I am all for it.

2

Oh Sarah I am so sorry for you having to deal with this. There is no one right answer, and yes local control at the primary site is key. There are folks here who had amputation and are strong healthy & happy, and those who have gone the route of radiation and or chemo and are also strong happy & healthy.


You need to make sure you have all information about the past surgery and the test results that are convincing your doctor of this course of treatment. Is the doctor you mention who is recommending amputation a sarcoma specialist? I know you are in Canada, we are in BC and the team that treated my son's SS was at the BC Cancer Agency and BC Children's Hospital. Has your case been reviewed by another sarcoma team other than the US folks your brother went to? The surgeon for my son was Dr. Paul Clarkson and my son did have radiation (radiation oncologist was Dr. Karen Goddard). Dr. Clarkson is actually an adult surgeon but he did my son's surgery because of his experience with SS. Both of them are part of the BC sarcoma team which would be able to review your case if you ask. This is typical process especially with these rare sarcomas, my son's case was reviewed by Sick Kids in Toronto.

Also I saw earlier that you had posted some questions about radiation - I am sorry I did not see it to respond at the time but here is some info based on what my son (now 11 & 1/2) went through. His tumor was near his elbow joint and he did have radiation before surgery. His arm is now fully functional although we are aware of the fact that it will be more susceptible to breakage because of the radiation. Dr. Goddard was excellent at helping us find out info on all possible options. My son did not have chemo so others here are experienced are better able to comment on that.

One thing you must know is that whatever option you choose it IS the right choice and then you just keep moving forward. You have to trust in that. I wish I could help more, my thoughts are with you and please stay in touch.

3

To avoid amputation, you need to find a sarcoma specialist who has a different recommendation. Here is a list of sarcoma specialists in Ontario:

https://www.cancercare.on.ca/cms/one.aspx?pageId=10355#

Your doctor is part of the list and I believe the doctors in the list all know each other but they might have different opinions and different surgeons may have different skills/ experience.

4

One more doctor that is not in the list but is a surgeon whose name comes back a lot is Jay Wunder:

http://orthopaedics.utoronto.ca/faculty/list/wunder.htm

5

We are in Las Vegas NV. My son is 16 and had the tumor at his knee. We were sucessfull after three surgeries in keeping his leg. We have now learned from an oncolagy specialist that even thogh chemo and radiation do not work in the synovial sarcoma treatment radiation done prior to surgery can make the surgery more sucessful and easier. I know the fear that this brings on but I would try everything else prior to amputation. The doctor that we had do the surgery here in Vegas is Dr. Hillock.

6

Hi ... I am Nik's mom.

I am very sorry to hear of your story. Doctors told us that size matters and 5 cm is a point to keep in mind. My son's tumor was slightly over 5 cm and it was around his spine. They removed it in 3 pieces. We traveled from Chicago, Boston, Houston, NIH (Maryland) and Pheonix for opinions and consultations on next steps. The doctor that I found that seemed to know this disease very well was in Dana Farber in Boston. His name is Jeffery Morgan. It may be worth another opinion from a center of excellence that see this disease more than smaller organizaitons.

I will keep you in my prayer for the right path for you.

Kelli (Nik's mom)

7

Hi Sara, I am sorry to hear that you were struck by this terrible disease. I do not like to give specific advice as each case is very different and I am not a physician. All I can do is share with you my experience.
I am on about the same time-line as you. I had a 4cm tumor removed (without negative margins) from my hand at the end of January. It was not thought to be cancerous at the time of the initial surgery. A biopsy determined it was SS. I was seen by team of world class doctors at Mass General Center for Sarcoma and Connective Tissue Oncology in Boston a week later. The plan we came up with was to undergo 25 radiation treatments followed by a surgery to achieve negative margins. Initially it was thought that they would have to remove my thumb to achieve this. As it turned out the radiation was very effective and it was not necessary to remove any bone. I had my surgery on May 11th and I am currently undergoing Occupational Therapy to return my hand to full use. They did have to remove a significant amount of tissue and two tendons. For me Radiation therapy was very effective. God Bless…..Dave

8

Thank you all for your help. Yes, my oncologist is a sarcoma specialist, and my surgeon is an orthopedic surgeon who also specializes in oncology. Both of them are recommending the amputation. I had spoken to the radiation team at the hospital, and the reason radiation doesn’t sound great is because this is my ankle, a key stress point for the bones, unlike the hand or arm which you don’t put too much pressure on, and so the fact that the bones will become weak after rad and I’ll still be walking on it constantly means that it will probably break. So I don’t really think that’s a good option for me, and I’ve also been told a radiated leg isn’t the most comfortable or easy thing to live with. Also, after doing research on limb sparing surgery + rad + chemo vs amputation + chemo for soft tissue sarcoma’s, results showed I might have a longer life with amputation. I’m not so much looking for any way to spare my leg, more like any way to live the longest life possible, but also losing as little as possible, and I’m really unsure if amputation is the answer to that. I also think chemo is important afterwards because it can help kill any remaining cells that may be lingering or growing elsewhere that we’re not aware of. Any thoughts? Thank you all, I hope you are all doing well and staying strong.

9

*also, I forget to mention my concerns of recurrance. Amputation ensures no local recurrance, which is important. I also forgot to mention my doctor said he believes amp is the right way to go because he is worried that it comes back, but with a secondary spread, causing metastasis. I am always grateful and open to thoughts, advice, or just sharing your story, it really helps. Thank you all.

10

My initial treatment was 4 cycles of chemotherapy followed by above-the-knee amputation followed by 2 cycles of chemotherapy. About 3 and 1/2 years later, metastases appeared in my lungs. I am still alive 9 years after my initial diagnosis and 4 years since my first lung surgery. If I was able to go back in time and choose again, I would make the same choice. On the other hand, if I had not picked the most aggressive treatment, I would regret it today. There is no miracle treatment that can give you 100% assurance it will cure you. This in mind, try to choose what you will not regret later no matter what happens.

11

Let me say you are a very strong and great person Elodie. You've helped me many times in many different discussions, and you are also very helpful to many others on the site, thank you.

How are your lungs now? Are your scans clear, or are you doing some other form of treatment? Also, is there any particular reason you had part chemo before, and part after amputation?

12

I was diagnosed 17 yrs ago with a synovial sarcoma in my right parapharengeal space.My neck area .I had surgery first then radiation. No chemo.They did not know much about this monster then.I will pray for you and your family .17 years goes to show you can beat it.They have much more info now.I am so happy they have this site to help everyone. God Bless

Marie

13

My husband has synovial sarcoma, having an amputation does not stop the progression of the disease. Have as many small surgeries done to keep removing the tumors. Life is tough enough than to try and get around with one leg. A prosthetic is tough to fit and you spend years changing them every few months and it is very expensive. Keep as much of your leg as possible. Don't assume with the first biopsy of your lungs that it isn't synovial because unfortunately it probably is. In the 3 years since my husband's amputations the doctors have changed their attitudes about amputations, if your doctor doesn't listen to you get another opinion. I believe that one of the best oncology orthopaedist is Dr. Raskin at Mass General Hospital in boston, mass. if you can get in touch with him. Stay positive, and stay proactive. Study your disease and check the internet everyday for new options. Good luck.

14

My son had a ss tumor removed by Dr. Wunder in Mt Sinai Hospital, Toronto ~~ & he is an amazing Doctor ~~ as his name says he is really a wonder(ful) doctor.

My son was looking at possible amputation @ his hip but Dr. Wunder & his team were able to save it. I hope you can get him. My prayers & thoughts go out to you for what you are dealing with. Stay positive & strong --that is more than 1/2 the battle & keep God close to your heart!!

15

I'm sorry to hear about your husband, hope he is doing well. It does also depend on the grade and how far along the disease has already got. I don't believe the spots in my lungs are sarcoma, mainly because 2 months after they were discovered none of them grew one bit. Over 90% of the time small spots in the lungs actually turn out to be either infection, benign tumors, or a gathering of blood vessels. I know amputation does not stop progression of the disease but it does slow it down. I feel like if it keeps recurring and I keep just taking the spots out it could agitate the cancer and spread even more. I am going to try to get an opinion from Memorial Sloan Kettering, and hopefully try something else, like a trial, before I do the amp. Stay strong.

16

Strw - What did they do to prevent recurrence for your son? Radiation? Chemo? I already had surgery with basically clear margins, but now they're focusing on how to stop it from recurring and spreading even more.

17

Such a great string of posts. My thoughts are with you Sarah.

18

My last scan didn't show any evidence of disease but I am due for a scan in August and my status could quickly change... Regarding chemo before surgery, the idea can be either to reduce the size of the tumor to simplify surgery or to weaken the ss cells so hopefully, they won't take advantage of possible favorable growth signals brought up by surgery. Indeed in some people, a rapid increase in tumor growth occurs following surgery (may be due to inflammation factors?).

The following publication just came out and may be relevant to your decision making:

http://www.ncbi.nlm.nih.gov/pubmed/22835783

19

So happy for you Elodie!! Will pray for great results for you in August!

20


My husband has had this since at least 2005, but we didn't find it until 2006. He did chemo for 2 years and was clean til last november when 3 spots showed up during his regular check up. He was on Votrient for 3 months and the spots increased and one more developed. His chemo doctor thought his spots were perhaps an infection they didn't change for 2 months and then on the 3rd month they changed and one more showed up and then they did the biopsy and they came back positive. But since my husband had a bad last chemo treatment they're very hesitant to start anymore at this time. He has a terrible time getting around with his prosthetic and now his shoulder has a tear in the tendon from falling and using a walker and arm crutches, so that's why I always advise getting second opinions on amputations, I wish we'd have just opted for surgery to have removed the last tumor in 2009. They thought amputation would stop the progression of the disease but it doesn't do that. It's a soft tissue cancer it can start anywhere. Amputations do not stop the progression. Best fo luck.
Sarah said:

I'm sorry to hear about your husband, hope he is doing well. It does also depend on the grade and how far along the disease has already got. I don't believe the spots in my lungs are sarcoma, mainly because 2 months after they were discovered none of them grew one bit. Over 90% of the time small spots in the lungs actually turn out to be either infection, benign tumors, or a gathering of blood vessels. I know amputation does not stop progression of the disease but it does slow it down. I feel like if it keeps recurring and I keep just taking the spots out it could agitate the cancer and spread even more. I am going to try to get an opinion from Memorial Sloan Kettering, and hopefully try something else, like a trial, before I do the amp. Stay strong.