Treatment of primary sarcoma in pelvis

Hello sjal5 

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 answered by other members of the bone cancer group.

Having read your post a couple of times I am wondering if the treatment offered to your partner is quite rare and possibly no one on the group has had the same or similar treatment.

It may be an idea to pose your question to our nurses and here's the link you need

Ask a Nurse 

I wish you well moving forward and do hope you get some answers.

Best wishes - Brian.

Hiya, 

im currently in recovery from a hemipelvectomy and complex hip replacement to remove a pelvic osteosarcoma. Im not going to lie 3 weeks in and the recovery is tough, I cant lift my owncleg so rely on people helping me in and out of bed, I cant do stairs and the swelling in my entire leg is crazy however, the intense pain i had 24/7 from the tumour has gone. Im also due to restart chemo soon so worried as to how that will go. Your partner will be in the best hands as theyconly let the specialist do these complex surgeries but it defo is a scary thing, I was put to sleep panicking about dying or waking up mid surgery and next thing i know it was all over.

i do feel the hardest part for me is the guilt of having to rely on other people and ask them for every simple thing as its such a big change as an adult to have to return to that. Hopefully a few weeks down the line id have a more positive response in terms of recovery for you! I am walking with a frame though so its not a complete write off,

good luck to your partner 

Hi Osteofighter - wow thanks for your response and positive message: you are up and walking using a frame - that is great after only 3 weeks 

It’s great to hear from someone with similar experiences 

It’s definitely very very tough and my partner is only a couple of weeks in but not yet able to get out of bed but, like you, the intense 24/7 pain from the tumour has gone.

I’d love to hear from you again about your progress and recovery, and I’ll let you know when we have something useful to share.

Wishing you the very very best

Oh im so glad they had the op and it went well, it seems our timelines are similar. My operated leg is still so numb and seems to be increasingly more numb further doen the leg and i cannot lift it which is frustrating as it means i need help in and out of bed or even just repositioning it to get comfortable, how has your partner found this part of it?

really wishing you both all the best with the new normal 

Yes everything you mention seems the same. Being so dependent is going to take a lot of getting used to and accepting.

Over time I’m convinced that you, and my partner, will adapt and find new ways to take back some of that dependency, but it’s a long road.

Keep in there, keep finding your positivity when you come through challenges and tough times.

It really is a long road and I dont think anything prepares you for just how long it actually is! Im 4 weeks in now but it feels like months.

hopefully your partner gets to work with ohysio and manages to get up out of bed soon as even just managing to get up and sit in a chair or go out in a wheelchair for some fresh air