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Synovial Sarcoma - Below Knee Amputation - Chemo & Surgery


#1

Hi Everyone,

I am 27. I had a tumour on my foot and completed an amputation for below knee. I also did 4 rounds of chemo.

If any of you would like to know more or have any questions, please feel free to contact me.

Happy to help :slight_smile:


#2

I wish you the best! Looks like you are very positive . I could use some of that energy for my daughter.

Did they give you the Chemo due to Mets? Or did they attempted first to reduce the tumor size before amputation?
Just curious, if they were going to amputate why put you thru the pain of Chemo.


#3

Thank you. Yes I am a very very positive person.

I had no mets. They first did the amputation and then did the chemo. The reason they did the chemo was because they said I was young, and it was kind of like a preventative measure for it not to come back.

We also consulted with different doctors and they all suggested the same.

Well, chemo was kinda hard, but I knew at the end I was gonna be back on track. The pain of chemo was just temporary. I am perfectly alright now and I am getting my new leg tomorrow. Yippieeee!

Prayers for your daughter. Never ever worry. Just pray for the best.


#4

That is indeed a super great attitude! I need some of that positive energy! Thanks for sharing your story and I am sure you will be walking again soon. There prosthetics are amazingly advanced now. A few military veteran guys at work have them and they move very well.


#5

Supergirl, I am an amputee too. Make sure to complain if your prosthetic leg causes discomfort. For me it took a second opinion to get the fitting right… Good luck!


#6

Thank you Elodie… Yes I did have issues wearing it for the first time. It was too heavy for me… also had pain on my knee,… Hope they would fix it soon… How was your experience when you wore it for the first time?


#7

The fit was so bad that the gel liner was damaged within one week. It didn’t help that the residual limb was still swollen and not completely healed. I was visiting the prosthetist very often during the first year. Prosthetic legs are indeed quite heavy but you will get used to that. Your muscles will get stronger and after a while you will not notice the heaviness anymore.


#8

Thank you very much for the response. I have started walking on prosthesis with my crutches. It is still heavy that I can barely bend my knee because of the weight. Hope it will get better with practice.


#9

Hi, my brother just got diagnosed with a Synovial sarcoma in his foot and sounds similar to your experience. I would love to hear about your experience, treatment and how you are doing now.


#10

Each patient is different. The first thing is staging it. The treatment depends if they can get clear margins thru surgery, how big is the tumor, how fast is growing, and if it has spread to other parts of the body like the lungs. Usually spreads first to the lungs.

If it is localized and small they it is usually radiation and surgery or even just surgery without radiation or chemo. If it is larger (5cm is the size they use) they may do chemo, radiation and in some cases amputation.

The best thing is to get a full body pet CT scan to see if it is spread to any other organ and a Chest CT scan to check the lung for nodules.


#12

H MGD!

My tumour was 4cm and was on my foot kind of in the middle. I had an amputation below knee and then had 4cycles of Chemo. For me it had not spread anywhere else thank God . I did CT scans and have been following up regularly.

Doctors advised to have amputation first before chemo which was the similar advise from US and India. I now have my prosthetic leg and I am doing very well. I absolutely have no issues now and is having my Physiotherapy going on now.

I still have SCANxiety though! Also no medications.

Please feel free to ask me any questions if you have any.

SUPERGIRL