below knee amputation experience for sarcoma

Hello cxbyr 

I am Brian, one of the Community Champions here on the online community. i have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and replied to by other members of the soft tissue sarcomas group.

I would have thought that if you do have to go ahead with the surgery - your team will arrange for your questions about rehabilitation and help with life after surgery to be answered before the operation.

I wish you well moving forward.

Best wishes - Brian.

Thanks Brian. The amputation has been offered/suggested only for quality of life as the alternative radiotherapy apparently may leave me with a painful useless stiff foot. There are no local patients that have been through this as I’ve asked both the sarcoma team & Maggies. 
unfortunately I have a rare cancer in a rare site so trying to find someone with experience of this who I could speak to.  I’ve Been told there is no survival benefit in me undertaking the amputation Grateful for anyone who has experienced radiotherapy to the foot to reach out

Regards Catherine 

Good Morning Catherine (cxbyr (01ce86dbad1c40ee9f3b204456193bc7)) 

I had a search of the Community this morning and didn't find anyone posting about radiotherapy to the foot. 

It's a bit of a long shot but what about joining and posting in this group:

 Radiotherapy & Side Effects forum 

We do get lots of people who "ghost" through the Community and never post anything. You may just strike lucky.

From what you say the radiotherapy route looks to be the best option. I have had 20 fractions of radiotherapy to the prostate and the two things I can say is it was pain free and it worked for me.

I wish you well moving forward.

Best wishes - Brian.

Hello,

My response might be too late as I’ve only just joined this group. I recently underwent a BKA for sarcoma (last week) so I can’t tell you what life will be like afterwards and you may be much further ahead in this journey by now! But I wanted to reach out in case you had any questions. My sarcoma was in my leg (and subsequently my foot) but I had radiotherapy to remove my original one. Whilst it was a different area in the leg to yours and I apparently got unlucky the radiotherapy damaged my bone beyond repair and I was on crutches for 5 months. Unfortunately, new tumours popped up in my leg and at that point I was told an amputation was my only option for cancer control, however without it I would never get my mobility back anyway so really it was my only option from a cancer perspective and mobility perspective.

I don’t think there is a wrong decision in whatever you’ve decided. Good luck with it all. 

Hi

im sorry you’ve had such a rough time & really hope the rehab goes well. 
I decided to opt for radiotherapy & am 14 sessions down with 16 to go. If I get local recurrence then it will be a below knee amputation but have to hope that’s not the case

All the best

Cathe 

Wishing you all the very best!