Chondrosarcoma in pelvis

Hi

I don't have the experience you're looking for but I've had a look in the group and noticed that Capitaine posted nearly a year ago about having chondrosarcoma in their pelvis. I have 'tagged' them into this reply in the hope that they'll pop in and tell you about their experience. You can read their post by clicking here.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best with your operation

x

Hi, Grimble, sorry to hear about your recent diagnosis.

You may have read my post of 11 months ago, Chondrosarcoma - Pelvis.

You are now a member of a very exclusive club - welcome.

We are all different. In the way we handle the diagnosis, what the exact operation entails, the success and the recovery. Nothing is identical. So the experience can be different from person to person.

Have 100% confidence in the team of people who will be looking after you because from this point on you cannot do anything but they will do everything that’s necessary to remove the tumour and make your recovery as quick and comfortable as possible.

As for controlling any pain, don’t worry, they will ensure you are pain free. My operation was in January 2020 at the ROHB and I stayed in hospital for 13 days after the operation. All the staff were fantastic with excellent meals. If your recovery is on a ward with other patients then there will be other people to chat to.

Stay positive, you have a date for your operation so that’s the first light at the end of the tunnel. You will have challenges along the way but with determination and perseverance you will look back and think “that wasn’t too bad”.

Feel free to ask any other questions. All the Best for the 27th.

Capi Taine

Hi! 

Thank you so much for replying. I’m now in the RNOH and being very well looked after. You’re right - everyone is lovely and very supportive.  

Unfortunately a few days before my admission I had significant swelling in the leg  the resulting tests show I have blood clots, a significantly bigger tumor from the last scan and it’s metastasised as there’s an irregularity in my lungs. 

that said, I still feel very well and I’m definitely in the right place. The next two weeks I’m going to let the medical staff do what they do best, make sure I keep me sense of humour, and try and eat!!!! 

But I really appreciated your words. I know I’m not alone but it does feel like that sometimes. I’ve got this. One day at a time. 

grimble  

Morning Grimble,

 Hope you are able to watch some of the Olympics to keep occupied.

Best wishes for tomorrow, everything will be fine.

Hi grimble, 

I've just joined this group and seen your post. I too was in RNOH Stanmore, in January 2021. Mine was chondrosarcoma in my hip and thigh bone. I had a Proximal femoral replacement, (hip and thigh bone) unsure whether your surgery would have been similar. Thought I'd just say hello and see how you're doing after the surgery 

Hi just wanted to say I had a grade 2 chrondsarcoma in my hip, found out in June this year. Had a hip replacement with a pelvic reconstruction as wellbut in the process of the hip replacement, the surgeon accidentally broke my femur. Anyway still on painkillers and still not a great deal of feeling down the front of my thigh and still can't do a kicking motion with that leg. 

Above else experienced the numbness and not being able to move your for properly?

Thanks

I'm now 6 months in from my surgery and still in alot of pain,  especially down the front of my leg and where my scar is. Can anyone tell me how their recovery went and how long before it doesn't hurt anymore. I just can't see an end at the moment

Hi there, I was just wondering how you’re getting on now? I’m currently 2 months post op, can’t feel my thigh or do a kicking motion or move that leg myself. They keep telling me this is normal and I need to be patient and I will definitely be able to feel the leg again but it’s difficult to stay positive sometimes and see the end. Hope you’re doing well yourself

Hi, I'm now, 16 months after the op,  still got numbness but can do a kick now. They said that the nerves are regrowing but after all this time, can't see the feeling coming back.  Still can't currely drive because I can't lift my leg off the accelerator and put it on the brake pedal and now I have to have another op because the implants apparently had bugs on them which has caused an infectioto develop . But without the infection, you should be gradually getting there, I was unable to fully weight bear until 6 weeks after the op and now, I can walk a few thousand steps. There is light a you will get there, I know it's frustrating because I've been there.  But keep persevering because you adapt and life gets better.