im sorry if this has been brought up before. I have recently been diagnosed with a chordoma on my sacrum and can’t seem to find anyone else who’s had this.
I’m 31 and terrified of the aggressive surgery they’ve described which could leave me incontinent and with loss of mobility.
I am getting feeling back in the leg that’s supposed to get worse so I don’t know if I dare be cautiously optimistic.
Hi Amy1475 and a very warm welcome to the online community
I'm sorry to hear of your recent diagnosis and it's perfectly normal to feel worried about how your upcoming surgery might affect you.
I've had a look in the group to see who else has had a chordoma in their sacrum and found these posts. If you click on the link you could have a read through them and reply to any of the more recent ones if you think the poster might be able to help you further.
When you have a minute, it would be really useful if you could pop something about your journey 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.
All the best with your surgery and do come back and let us know how you get on.
Hi please be optimistic l have had Chordoma lumbar for nearly 7 years due to misdiagnosis for two years l have spread. BUT after 3 operations and
And three rounds of radiation l am still here fighting. Main thing you must do is find an experienced surgeon who has treated Chordoma before as this very reare Cancer needs to be handled carefully due to seeding. Where are you and who is treating you.? Have they mention Proton treatment after your operation.?
Sorry for not posting sooner, but I dont often log in!
I was finally diagnosed with a Chondrasarcoma last May (sorry if this is nothing like your diagnosis). The first operation I had to remove the tumour and insert metal rods and bolts in my back happened within a few days. The tumour was putting pressure on my spinal cord and making my legs weak (it got to the point where I couldn't walk). thankfully ive regained full use of both of my legs. I had to have the metal rods and bolts changed to carbon fibre a few months after to allow me to have Proton Beam Therapy, which im starting in a couple of weeks time. Ive had the initial assessments a couple of weeks ago, so its now ready to go ahead.
Where in the country are you? there's very few hospitals that deal with the condition, im under the care of the London Saroma Service, which is spread between University College Hospital London (UCLH) and the Royal National Orthopaedic Hospital (RNOH) in Stanmore. With the Proton Beam Therapy only available in Manchester at the moment (London Centre at UCLH due to open later this year.
Good luck with your recovery.
Thank you all for your replies. Since my initial post I’ve had multiple discussions with my consultant and have decided the reduced quality of life the surgery would cause is something I’m not ready to face. Possible loss of bowel and bladder control and likely no improvement or worsening of my mobility.
So I’m going for proton beam therapy in Manchester with my initial assessment in a couple of weeks.
However I’ve only been under the care of the sarcoma consultants in Oxford and not seen anyone listed as a chordoma specialist. I’m now panicking that I may not have a full picture of my condition but I’m worried about waiting for a second opinion and potentially delaying my treatment which I’ve been waiting for since October.
Mr Pollock at Stanmore agreed to give me a second opinion but needed my imaging which I haven’t been able to get and now I can’t get a reply from them.
Now more stuck than ever!
Ive been under the care of the London Sarcoma Service, and had surgery at Stanmore, although I'm not under Mr Pollock (my consultant is Mr Anwar). It really is the best hospital, they are a centre of excellence.
Your images should be available for them to gain access to online (I've been scanned at two other hospitals and they were able to access them). Every surgery has a list of potential side effects and what could go wrong, but they are normally lower odds than it going to plan! I was absolutely beside myself signing the consent forms, but everything went to plan and with the help of the physio team there I was back to climbing stairs within a few days (just as well as I have 53 steps to my front door!).
Have you been referred to The Christie yet for PBT?
I''m off to Manchester next weekend to start my PBT, I'll be there for about 9 weeks. I went a couple of weeks ago for the assessments. Its really reassuring when they go through the process, they explain everything. I just can't wait to get it started and get the final bits of this unwelcome visitor evicted from my body and press the play button on life again, its been on pause for too long!
I'm not medially qualified or an expert on the subject, but if you have any questions I'll try to answer then.
I hope it all goes well for you, you never know we our paths might cross in Manchester.
I am trying to get a second opinion from the London Sarcoma service but no reply as yet. It is hard to stay positive now I’ve realised how much I’ve missed not having a chordoma expert on my case.
yes I’ve been referred to the Christie and will be up there the first week of March for my initial assessment, so quite possibly cross paths!
I hope your PBT goes as well as your surgery and you’re cleared soon!
I had surgery last year, in my case the PBT is to get rid of the last few rouge cell around the area they operated on.
The bulk of my tumour was removed at a local hospital as an emergency operation, I was then referred to the London Sarcoma Service for expert care. I had second op at RNOH and scans etc at UCLH.
How did you get on this week at the Christie?
Did you have a blue bean bag made ready for treatment? For me that was the most uncomfortable stage, having the scans ready for treatment!
I’ve just had my fourth session of PBT today. It’s quite relaxing once you get started!
Just wanted to wish you good luck with your treatment.
Honestly, the blue bag session is the worst! Once you start treatment it’s painless and the sessions seem to go by quicker and quicker, it takes longer to make sure you’re in the correct position before they start.
I hope it all goes well for you and you get your consultation at RNOH soon.