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Synovial Sarcoma - Suggestions Please?!


#1

Hi, I’m Shannon and I’m 22yrs old and had a 2.5 cm tumor removed from the bottom of my left foot (near the arch) on March 14th. I found out it was synovial sarcoma on March 16th. Wednesday the 21st I met with a sarcoma specialist at Shadyside hospital in PA and he gave me two options for my foot. Option 1 is to remove everything around the incision to the bone, have plastic surgeons fix the hole, then have radiation on my foot. Option 2 is to amputate the front half of my left foot. I’m having a really hard time making a decision. I keep going back and forth and I need to have an idea by the end of this week if not sooner. Any insight would be great and definitely appreciated !! Please help!


#2

Tough decision! I personally did not have the option for an amputation and if I did, I wouldn't have because I was more athletic at the time. Unfortunately, amputation does seem to be one of the more effective treatment options. If I could start over with this whole thing, I would avoid first line treatments and try hard for any other options available, ie clinical trials.


#3

A huge decision for sure. For me, I needed to get a second opinion and explore all my options. I lived in Los Angeles when I had to deal with my SS in my leg.

I found that many oncologists as well as surgeons had a variety of suggestions. I would suggest calling Dr. Sant P Chawla in Santa Monica for a consult. He was a hero to me and made all the right calls as far as I'm concerned.

You can always call me as well.

Regards,

-Jesse

503 707 7704


#4

My son was dx with synovial sarcoma when he was 18..we did the chemo and rad and surgery route. But if I would have known what he would have faced later on I think we would have really thought about amputation. He was right handed and only 18 at the time and the tumor was on the right forearm. He goes to Hillman Cancer Center in Shadyside. His surgeon was Dr McGough and his cancer dr is Dr Tawbi. Who do you see? Would like to hear from you. Take care and if you need anything just let me know.


#5

Every case is different which is why I didn't explain mine on purpose. Don't be swayed by what did not work for some. Keep in mind as well that many people who survive and have no re-occurrence, like me usually don't post on boards like this. They move on, etc.

-Jesse


#6

McGough is also my doctor. I’ve met with him once and I’m waiting on ct scan results from him today or tomorrow. I have an appointment with Dr. Tawbi this Friday. I’m happy to have found someone with the same doctors! I just keep talking myself into one option one day and the other option the next. I don’t have too much time to decide so it really really helpful to get all of this feedback! Thank you everyone so far!


#7

Jesse,

Would you mind emailing me some more detail about your specific case? I’m on really interested in learning what I can about this. If you aren’t comfortable doing so, no worries. My email is ■■■■■■■■■■■■■■■■■■■


#8

they are both great dr's. like I stated before Joe did the chemo rad and surg route because he was only 18 and he was right handed so we thought amp of his right hand was not a good idea at the time. Dr Mcgough removed the tumor and had clean margines but 3 or 4 months later it had spread to his lungs and we have been dealing with it since 2009 and he's 20 years old now......if you want you can email me at ■■■■■■■■■■■■■■■■■■■ or call me at either cell 724-■■■■■■■■ home 618-■■■■■■■■...take care would love to hear from you 22 said:

McGough is also my doctor. I've met with him once and I'm waiting on ct scan results from him today or tomorrow. I have an appointment with Dr. Tawbi this Friday. I'm happy to have found someone with the same doctors! I just keep talking myself into one option one day and the other option the next. I don't have too much time to decide so it really really helpful to get all of this feedback! Thank you everyone so far!

#9

http://www.nwsarcoma.org/index.php?option=com_content&view=article&id=388:jesse-s&catid=35:patient-profiles&Itemid=77

This will explain me. I'm here anytime you need to talk. Trust me I realize how life can come to an abrupt halt.

-Jesse

503 707 7704


#10

2.5 cm is a blessing!! I would suggest a second opinion from one of the Synovial Sarcoma (specific) clinics around the country. I am currently being treated for a 3.2cm on my left hand Diagnosed in January,at Center for for Sarcoma & Connective Tissue Oncology at Mass General Hospital in Boston. The Doctors are Orthopedic Oncologist. Where I can not speak to your condition or circumstance, in my circumstance being less than 5cm in size the objective is to radiate for 5 weeks (2 treatments left) wait one month and go back in and take a clean margin. The original tumor was removed as a routine ortho procedure not knowing it was cancer. They may have to take some of my thumb but they will not amputate. Good luck and God Bless.


#11

Definitely get a second opinion. I'd suggest going to one of the big sarcoma centers, like Memorial Sloan Kettering. The sarcoma alliance will provide financial assistance for getting a second opinion. http://sarcomaalliance.org/financial-assistance/


#12

Hi Shannon, first take a deep breath. Do you have to make such a decision so fast? Give yourself some time to check out all of your options. Synovial is usually a slow growing tumor. If you just opt for the least amount of damage to your foot you could have surgery later on to do the radical part. Do everything you can to keep walking if at all possible. Learn everything you can about the disease first. Have you had your whole body scanned? If not please do so first just to make sure it isn't manifesting somewhere else, which it usually can do. Check out all of your options, make sure you also talk to an orthopedist for the best possible outcome. Go informed to the Dr. ask every question that is running through your mind write them down no matter how silly you might think they are. My husband first found his in his knee but it was 9 cm large by the time we found out. Mass General did his first surgery where they put a steel rod in his leg but didn't do radiation of the area which I thought was a mistake later on but didn't know to ask the question, 3 years later it came back in the back part of his knee and unfortunately required an amputation that was 6 years ago for the first surgery and 3 years ago for the amputation. They have made great strides in chemo therapy since then for this cancer. So try to do the least amount of damage to begin with, being able to keep moving is so important. Good luck and don't hesitate to let me know if you just need to talk. Good luck. Linda Cleveland


#13

If you have Dr. Raskin for your oncology surgeon you are in excellent hands. Good luck.

Mailman Dave said:

2.5 cm is a blessing!! I would suggest a second opinion from one of the Synovial Sarcoma (specific) clinics around the country. I am currently being treated for a 3.2cm on my left hand Diagnosed in January,at Center for for Sarcoma & Connective Tissue Oncology at Mass General Hospital in Boston. The Doctors are Orthopedic Oncologist. Where I can not speak to your condition or circumstance, in my circumstance being less than 5cm in size the objective is to radiate for 5 weeks (2 treatments left) wait one month and go back in and take a clean margin. The original tumor was removed as a routine ortho procedure not knowing it was cancer. They may have to take some of my thumb but they will not amputate. Good luck and God Bless.


#14


Even if you'd had radical amputation it doesn't necessarily keep it out of your lungs, my husband had an amputation below the knee in 2009, and he was cancer free after two terrible stints of chemo and his cancer is now in his lungs so the amputation didn't prevent it from moving. I just wish they would have removed that soft tissue irradiated it and left the rod in his leg. His amputation was quick and fairly painless considering but getting him around with no leg has destroyed his body and mine too helping him. And the phantom pains have been pretty rough, but they have made great strides in new chemo therapies which we are hoping to find out about on wednesday. So just learn about the disease and don't make any immediate decisions.
Adam0 said:

Tough decision! I personally did not have the option for an amputation and if I did, I wouldn't have because I was more athletic at the time. Unfortunately, amputation does seem to be one of the more effective treatment options. If I could start over with this whole thing, I would avoid first line treatments and try hard for any other options available, ie clinical trials.


#15

Whoah! That IS tough... All I can say is to have you and your family sit down and talk it over, and I mean really sit and focus on the topic. Have a pen and pad and discuss it like real professionals. Maybe not able to produce an answer initially then make a second appointment as a family. Let everyone Google some information to share the next time and when the meets over then have your time alone. In the end, the decision is YOURS to make alone. Your family's role is to help you make an informed decision.

Once you made a choice, again have the family together and pray for the success of your decision.


#16

Just an update: my ct scan results came back and luckily nothing has spread to my chest, lungs, etc. I was so glad to get the news! One less thing to worry about (for now at least). Again, all of these responses I’m getting are so helpful to read and understand! Thank you to you all!


#17

Great post Shannon! Already read by 127 people, amazing!


#18

Hi Shannon, Just heard that ct scans came back clean..thats awesome. Ironically I was in your place just 2 months ago, 3.5 cm tumor found on left ankle. I decided to try the radiation and see what happens. Radiation oncologist was very optimistic, but was worried that the therapy would kill the blood flow to the foot and eventually lead to amputation anyways. Well my 42 radiation treatments are up, no damage or side effects except my skin burn and thursday scheduled for my resection surgery. Although I don't know what the future holds I am glad that I chose the decision I did. And as you walk this journey, enjoy every moment!!!!!


#19

2.5cm is small and theoretically if the surgeon can get clear margins, your prognosis is good. Did the surgeon explain what are the plus and minus of both options? Is he sure that surgery + radiation is enough to get clear margins? What option would he take if he was the patient? How would a surgery + radiation affect the function of your foot? With a half foot amputation, you only loose the toe function but you may get some phantom pain. Is pain also a concern with surgery+radiation? A second opinion from another orthopedic surgeon might be a good idea. I don't have anybody in particular to advise but here is a list of orthopedic surgeons:

http://msts.org/forThePatient/FindDoctor/results.cfm


#20

Hi Shannon, my name Jacqui. When I was 23 they discovered a synovial sarcoma tumor in the arch of my left foot. It was 3 cm wide and thick and nearly 9 cm long. This is huge for a 23 cm foot. I too had to discuss with my doctor and my parents on whether or not to amputate. We had to amputate, the radiologist said that there was no way my foot could recover properly from a removal. They also said I would be on bed rest for 6 months if I took that route. So I had my foot amputated on June 21, 2010 - almost 2 years ago! I was walking on my prosthetic in August. The process of getting a great fitting one has been slow and frustrating but I have a good one now! I go out dancing with my friends all the time. I have ran a 5 km run. I can go swimming ( I prefer to not wear my artificial leg when I swim - its easier without). My surgery was in June, I did chemo from August until October and I was back at school in January 2011. I am graduating next month with my history degree. I cannot tell you what to do, but this is my story and I hope it helps. I was pretty much in the same boat, and I am very happy with my decision! If I had gone the other route I would be limping and probably be facing amputation later - plus I would have ugly scars from skin grafting! my email is jacqui.warner.86@gmail.com please contact me at any time! :0)