Bone cancer

A place for people affected by primary bone cancer (including osteosarcoma, Ewing's sarcoma and chondrosarcoma) to support one another, ask questions, and share their experiences.

Giant Cell Tumour - support....

Nlewis27
Posted by

Hi Marie,

I was adiment that it wasn’t gonna beat me, and yes I was in a wheel chair for a short spell but that was because I didn’t have the strength or the stamina to manage more than short distance , which I’ve built up slowly.  I was in 3 months the first time as I managed to have an infection in the wound site but I was told if that hadn’t off happened I would have been in now longer then 2-4 weeks, my final spell after being rebuilt as I was great at breaking my metal wear, but I was in and out in a week.  I would recommend hiring a stair lift if u intend on still using your upstairs as u will be amazed how much work this takes out of you.


 I’m a year on from my last op and when I’m pain free I just walk up and down them slowly and when I’m not so comfy I use the stair chair (kids love these, my two yr old niece thinks it’s amazing and has even stuck a colostomy bag to her baby vest coz she wanted to copy me, major cute, (Early days I couldn’t have a shower on my own if she was at my house lol) 


My ops were done at Newcastle RVI my consult is Mr Alistair Irwin, if you want ur consultant to consult with mine, I’m happy for him to share my experience with him (suppose that’s how they all learn and develop)   I had denusemab until they did the tumour/sacrum removal the no more as the cancer was gone.   Why are you having your sacrum removed if you don’t mind me asking ? 


I would like to say they give you the worst case scenario and anything short of that is amazing, my constultant was blunt as anything and I never left his office not crying, however I am also aware that I was a bit of a trail as there’s not many cases out there.  




marie75
Posted by

I'm going to move my bed down stairs if might need wheel chair.my specilist is in London but if he won't do the op I'd love to get in touch with urs :).I've had 2 diffrent bowel cancers that have now spread to my liver and sacrum it's now gone inside the bone so my specilist said I would need it removed if other hospital can do it.ive been told it rare to get it to I'm getting numbness  all up my back and don't know if this is from my last op or the new tumour,thank u for speaking to me about everything I've been trying to find someone else that has had this done for few months now u have made me feel better about the op xx

Nlewis27
Posted by

Blimey you have been through the mill :( good idea bout moving ur bed down stairs I did that prior to the stair left being fitted.  Sacrum removals are very rare along with getting the bone cancer there too, I had a giant cell tumour and it’s meant to be one in a million that get it.  Why won’t your consultant do the surgery ? Numbness can come from pressure on the sciatic nerve, keep and eye on the red flag signs and let them know straight away. 

I really struggled to find anyone when I was going through it, it was really scary going into the unknown.  If you are on Facebook there is a group for Giant Cell Tumours and colostomies they are really good communities that support each other, and you can see what others have been through and how they have coped.  Would be well worth joining, I’m only on Facebook for those issues can’t be bothered with the other rubbish lol .   Your consultant should be able to get into touch with mine :) xx 

marie75
Posted by

I'll have a look on Facebook didn't think to look on there :) my cancer specialist wants me to have the op but he isn't sure if the London hospital can help me so I'm a bit confused at min.my numbness travels the hole way up my back and across my hips I'm waiting on a call from my nurse to see if London hospital have said yes or no to the op I've been waiting nearly 2 months to hear but the chemo isn't working at all on my sacrum has helped my liver tumours though :) if London can't help me ill defo get in touch with ur consultant what hospital did u have the op done xx

Nlewis27
Posted by

Ah ok your with a cancer specialist as I was under and orthopaedic surgeon, I was on a new drug which helped shrink my tumour called denusemab, not sure if it’s worth asking if u can try it ??  Awe I can’t believe they have made you wait that long, I would give them a call just to see if they can give you any updates and any of ur change ins symptoms being checked ??  

I hope u get sorted soon, and I’m glad that you can be more positive about it now, mobility wise I’m doing great so doubt for any minute that you won’t be ready to kick some butt so to speak.


Do you know it’s a 10hr surgery ? They were amazing at addressing my major fear over this, can’t fault him and his team in anyway what’s so ever. 

marie75
Posted by

I phoned my nurse today they are waiting to get new scans done then they will be sent up to london to see if can have the op I'm on a trial drug to as the other chemo I was on didn't work.u have defo made me more positive I just worry so much because I was misdiagnosim  for 4 years telling me it was all lady problems so don't trust hospitals to much.didnt realise was 10 hour op the last 2 ops I've had were just under 7 hours each.im more worried how long I'll be away from home as hospital couple off hours away so my kids won't be able to see me. so glad your doing so well getting about given me alot more hope xx

Nlewis27
Posted by

Fingers crossed then it won’t be long until you are re-scan, I know the feeling once your mind is made up to go head you just want it over and done with,  and very understandable to be apprehensive when being misdiagnosed for so long, but your under the cancer specialists now and they will be doing everything they can for you now, even if it doesn’t feel like it, bu it takes a lot to get all the right team together to do an more specialised operation and it’s more than likely both our teams have already spoken with it being such a rare op x it’s ok to ask for updates as many times you want though

I used to work in a local hospital recruiting the junior drs and getting all the consultants together just for an interview at the right time was the worst part of the process  


The worst part of the whole thing for me was Newcastle is an hours drive away from my home and I missed my girls soo much, I spent too much time away from them and feel like I’ve missed so much. However I fought every second to get back up on my feet and home again for them. 


How old are you children? 


Mine are 8 and 11 now and we linked in with the school and they have been fantastic with supporting them at school with 1-1 therapy (talk and draw).  I would highly recommend it so that they don’t bottle it all up inside xx 

marie75
Posted by

I had mri last night and got ct on 28th so hopefully I'll hear something next month.my children are 20 and 25 was easier when had cancer last time as they didn't see as much being at school now they know everything as they have to help me they were dealing with it ok till they got told I could only have year to live and was put on palitive care but thank god at min my liver cancer is shrinking :) I didn't realise just how rare our op is xx

Poppy 18
Posted by

Hi sezzy87

I know this post is old, but wondered how you got on? My daughters just been diagnosed with a giant cell tumour which has been removed from her talus. I wondered how they treated it after it came back and how your recovery been since x