New Member...Hi.

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Hi. I'm not a patient, but my wife is.

Diagnosed 3 years ago exactly, underwent enucleation after Ocular Melanoma removal and plaque treatment (all at Liverpool) failed (pigmentation changes in eye after 3 months indicated return of OM).

She's been on 6-monthly CT scans, and all clear until the September one, which showed a large shadow on her liver. MRI confirmed it was a tumour, with an undisclosed number of smaller lesions too. So far we've had a catalogue of cancelled appointments, delayed scan results and other time wasted, and we're nearly 3 months post-scan with no treatment started. Anyone else had similar issues?

I've made several representations to some senior folks in local Health Trust to try and get things moving...I want her to have the best chance of surviving this but time is running out now with a rapidly growing tumour.

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

    I'm sorry to read about all the difficulties your wife has encountered since her diagnosis and I can understand how difficult this must be for you both.

    You say that you have spoken to senior people in your Health Trust to try and get things moving and I wondered if that had had an effect. If not, if you haven't already spoken to the PALS (Patient Advice and Liaison Service) at your hospital then that would be another avenue to explore. Part of their remit is to help resolve problems when you're using the NHS.

    It would be great if you could put something about your wife's 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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  • Hello   A warm welcome to the Eye cancer forum. I am so sorry to read about your wife's issues - I am aware that time is critical in dealing with issues like your wife has. I can't give you any answers as I have a different cancer, however by me replying your post will be "bumped" back to the top of the forum and other members of the Community may well have answers for you.

    I have had issues with my personal cancer journey and I have managed to resolve these by:

    * Contact with the hospital PALS (Patient Advice and Liaison Service)  They managed to make my journey progress much faster.

    * Contact your MP as a last resort - this moved my case after the PALS team had brought my issues to the attention of the hospital management..

    I hope the above helps.

    Best wishes - Brian.

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  • Thanks Brian, wife has a complaint lodged with PALS who have been good so far. She's also contacted her MP and our MS (we're in Wales). I also fired off a rocket at the weekend to both relevant Health Boards which has had a mixed response. Hopefully we'll know more today regarding a way forward. Thanks for your encouragement and advice, and all the best! 

  • Cheers Latchbrook. Yep, PALS are jacked up. I did fire off a rocket at the 2 health boards at the weekend too, as the various delays and systemic failures now mean the wife has waited nearly 3 months to start treatment after the tumour in her liver was first seen on a scan. Mixed response but at least it's a response. I will update profile when I can, but so much to do at the moment. Cheers!