Chondrosarcoma in pelvis

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Hi all. 

My biopsy revealed I have a grade 2 chondrosarcoma in my pelvis and the hip joint space. I have my op on the 27th of this month. 


I know everyone’s different but I’m told to expect at least 10 days in hospital  I’m a (usually) fit and active 45 year old. I was just wondering if anyone has had this type of op and how they felt afterwards? 

I’m afraid I’m not being very brave. I’ve been in a lot pain these last few weeks and am on far too many pain killers for my liking. As I also have too much time on my hands, I’m worried the hospital won’t keep my pain under control post op. Please excuse the anxiety level but I’m an amateur cancer patient! 


Just wanted advise on this length of hospital stay- how did others cope/fill their time and I suppose reassurance. 

otherwise best of luck to everyone going through this difficult journey. 

thanks 

  • Hi

    I don't have the experience you're looking for but I've had a look in the group and noticed that 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

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • 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