Sacral chordoma

Hi everyone,

i was diagnosed with a very large sacral chordoma in Dec 2019.

in Feb 2020 I had 19 hour operation over a 30 hour period.I then had 2 months stay in RNOH Stanmore.

I now have permanent stoma, need to self catheterise and loss of sexual function all of which were expected.

my side effects that were not expected are bilateral foot drop need to wear splints on legs, also have stress fracture to my water pipe which makes me leak therefore I need to have conveen and leg bag , am waiting for operation to cure this prob along with 2 hernias.I also have nerve damage and pain in my feet.

some good news for change, they did remove the whole tumour, no sign of return of cancer to date

my problem at this present time is that I can’t get my head around my stoma and urology probs more than my mobility problems, but I hope that things will get better with time but I am greatful to be alive as so many other cancer patients have not survived.

be nice to hear from anyone with similar experience.

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

    That's great to hear that your tumour was removed but you must be disappointed to be left with lots of side effects.

    As you know, the online community is divided up into different support groups so I hope you don't mind me recommending that you also join and post in the ileostomy, colostomy and stoma support group which would give you the opportunity of talking directly with others about your stoma problems.

    If this is something that you'd like to do just click on the link I've created and then join and post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'.

    When you feel up to it it would be good if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. 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.

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  • Thank you, that’s very helpful.