Sacral Chordoma

Hi ThenotoriousDJK and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Hi there. I have a suspected sacral chordoma. I’m going to Birmingham on Monday and I’m terrified but really need to know what this is. 
I feel everyone thinks I’m being dramatic but you can’t see any symptoms.  You can feel a lump deep on my sacrum but nobody would know. I’m so fed up. And my mind is in bits. 
of course it might not be but I’m terrified. 
how are you now? I hope you are well 

Hi there Lucy, my biopsy did come back as a Sacral Chordoma, I opted for surgery under Mr Simon Hughes at The Royal Orthopaedic Hospital and I went under the knife on June 17th, the Chordoma was removed successfully with clear margins so I was told it is very unlikely to spread. I was referred to Christie’s to start Proton Beam Therapy but the planning scan I had showed that the disease had spread and I had two sites of reoccurrence at T11 & T10 of my spine, since then every scan I’ve had has shown more disease progression each time and I currently have Chordoma’s at C1, T11, T10, T8, L3, L1 & S1 of the spine, my 3rd, 8th & 11th right rib and there is disease progression on my adrenal gland and my lungs also. I have had 4 sessions of radiotherapy and two different courses of chemotherapy drug (Imatinib & Afatinib) which neither have worked and the tumour at T8 is crushing my spinal cord that much I’ve recently became paralysed from the stomach down and can no longer walk. Given how the disease has progressed I’ve been given 6-12 months to live. If you have any questions for me feel free to ask. Who is your consultant at Birmingham may I ask? 

Im so so sorry that it’s spread so badly for you, that’s devastating 
You must have been through so much already.

im not sure who im seeing on Monday  

i had a tumour on my kidney 5 years ago which was benign  I was seen by mr desai  

I went to A&E about 3 weeks ago because id had some strange symptoms sore neck,   backache, shooting pain down one leg. Unable to empty my bladder  had recently lost weight.  and just had a horrid dread  

they weren’t interested at Stoke and just said it’s probably something and nothing . 
the next day I was rubbing my lower back to ease the ache and I felt a hard lump on the left side of my spine  like at the top of my bottom   
I went straight to gp and he wasn’t much better  so I decided to call the nurse from the sarcoma team they always been lovely  

she was great and when I told her my symptoms said she’d get me seen there as I need an mri and it would be much quicker than waiting for referal as by now itt had been already 2 weeks  

so I’m going Monday  I’ve been having pain mainly at night, still losing weight as my appetite is awful 

My back on the lump side sometimes feels warm 

I’m struggling with a combo of constipation and the runs.  My heads panicking one minute and positive the next  

I just want to know. Being in the dark is driving me insane! 

I hope you are getting loads of love and support. It’s just a vile disease so sending a massive hug to you 

Thank you for the kind words and I can’t begin to imagine what you’re going through, it’s horrible having to wait and not knowing! I was in the same boat after having my biopsy and waiting for the results. I was assigned Emily Harris as my CNS and she was so great at explaining things! You will have to keep me updated on what the MRI shows and if you have a biopsy. I hope everything turns out okay for you though!  

1. . I’m just so scared because it’s a very hard lump, it quite deep and I originally could only feel it when my back was bending over biut now I can feel it without bending. It’s immovable. I’m obsessed with feeling it. I don’t know why I doubt , it’s  going to magically disappear!
   im not sleeping well.. the nights are worse and my mind goes into overdrive!
   I keep thinking there’s no way I could be that unlucky. But who am I kidding, I am 53 and it’s the fact it’s hard and not budging that makes me think I it’s something nasty.  
   I will let you know how o get on. 

Apologies if there are typos but my vision has gone quite blurry recently. Who knows if it’s related to this. My balance is off too. I’m just going wrong all over! 

So just got back and I’m as frustrated as ever. 
waited until it was about 1 hr and 15 mins after my appt time and the room was virtually empty. Asked at reception how long it would be to be told ‘oh Mr Ford has gone’. So I said well I did check in with you and they apologised and made some calls. They said he was somewhere else now but somebody would come and see me. 
I saw a doc.. she didn’t seem concerned even though I have so many so called red flag symptoms. She didn’t think my lump near spine, bowel, bladder problem, weight loss, pain worse at night ,shooting pains in leg and arms, balance off etc wtc were concerning when I was told they were red flag symptoms.  
So now I have to wait 12 days for an mri. I feel so confused. But all I can do is wait  

seems a bit of a shambles to me?! 

Having to wait 12 days for the MRI scan is a joke, they messed up with your appointment, so that is 100% on them! Have you even been told that a biopsy will happen yet?

No. She just said she could feel a ‘bit of a lump’ but didn’t seem concerned. 
mot much I can do apart from wait. 
I asked if there was some better pain killers I could have as naproxen did nothing and I wasn’t sleeping at night and she said that naproxen is the strongest there is? I mean ‍♀️