Chordoma in the sacrum

Hey Liam

So good to hear that the worst bit is hopefully behind me. Looking forward to starting my treatment. 

Do they generally run smoothly? How long do you spend in the hospital?

Hope you sail through the rest of your treatments

Amy

Hi Amy

sorry for the delay in responding!

Most treatment sessions are about half an hour, most of which is getting in the correct position before the treatment starts!

Some days it might take a bit longer, they do some scans during the course of treatment to make sure everything is going right, it only adds about 10-15 minutes. 
once a week they do a clinical review, where they take bloods, check you blood pressure and weight, then you see a dr to discuss any issues you might have. This can make the day a bit longer depending on your appointment times and treatment time, but they do their best to move things about to get you through as quick as they can.

Take care

Liam

No problem Liam!

Thanks for all that info really good to have a better picture of what to expect. 
Im actually looking forward to starting my treatment 

Amy

Hi Amy and Liam

Apologies for resurrecting an old conversation but I was diagnosed with a Chordoma on my Sacrum on Tuesday. Still dealing with the news and waiting to hear more about the proposed surgery and PBT.  I'm being dealt with by the Sarcoma team in Oxford.  

Hope you're both doing well with your recovery.  Any tips you have for someone at the beginning of the journey would be appreciated.

Thanks

Pip

Hi Pip

First of all I’m very sorry about your news. 

I was referred by the team at Oxford to PBT in Manchester but have just had my treatment stoop because my tumour has grown.  

Who is your consultant? 

I highly recommend joining the Chordoma Foundation as there’s tons of useful information there - chordomafoundation.org

Take care
Amy

Hi Amy

Thanks for the quick response.  Sorry to hear it's grown - what's the next option for you? 

My consultant is Mr Jeremy Reynolds - he's a spinal surgeon I was seeing about a slipped disc when he spotted this. He happens to be on the Sarcoma MDT so lucky really as many others would have missed it. The good news is it's very early, before it was causing any symptoms of its own.   

He's keen to operate now while there's still a chance of removing it without damaging too much of the nerves.  But it's a big deal and a bit daunting! 

Cheers
Pip

Hi Pip

I know how daunting it all feels in the beginning, especially when you try to find information for yourself and you can’t. 

Oh wow that is really lucky, it is definitely encouraging that it was caught so early. I hope you have a good support system and I’m here if you have any questions. 

amy 

Hi Amy, 

I had that aggressive surgery that you mentioned in feb 2020. If you want to know life and all side effects 2 1/2 years down the line, please reply 

Hi Melo 

Thanks for your reply. I didn’t have surgery in the end and they say it’s too late for me. 
How has your journey been?

Hi Amy,

lm sorry they saying it to late for surgery, so what is their plan then?

l have often thought to myself , did I make the right decision having surgery, and even myself or if speaking to family and friends it answers always ends up being YES because yes my quality of life is not great but without having that massive tumour removed by that fantastic team at RNOH Stanmore my life would of been much worse now.

I was told that PBT would not work for me, so after op and 2 month stay in Stanmore and after being discharged in April 2020 l had to wait until July and then started 5 day a week trips to UCLH for 39 sessions of radiotherapy which finished in mid September.Those therapy sessions were so exhausting and did have some skin radiation burns on my backside area but I now have been clear of any return of the dreaded C word up to date , but for that I had to pay for with all my side affects.

Currently waiting for a joint operation for repair of my bladder leakage and removal of leg bag and repair of my 2 hernias.

The radiotherapy I had makes all of the above operation less successful, see there we go again, you have to pay for it.

Anyway that’s enough about me, so what is you’re current situation , hope you are getting somewhere? and being as well as you can be.