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gurney696
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Joined: 04 Aug 2008
Posts: 3
Location: S Wales
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 Posted: Tue Aug 05, 2008 5:23 am Post subject: Renal Cancer with OMS |
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My partner was taken ill with what appeared to be vertigo and was then diagnosed with acute vestibular neuronitis. His condition worsened and he was hospitalised with a suspected stroke. After all tests proved negative apart from a few strange anomalies in blood and spinal fluid he was diagnosed with Opsoclonus-Myoclonus Syndrome and following a CT scan to try to find out what was causing this disorder he was found to have a mass 'compatible with a tumour' on his left kidney. His case was due to be discussed last Wednesday but, unfortunately, they did not have time to do so and it will now be next Wednesday. He has now been sent home and started on a course of steroids, Prednisolone 60mg per day, to alleviate the OMS symptoms (which have improved with other medication) awaiting the findings of the meeting. We were told that they would probably operate and remove the kidney within days rather than weeks. However the steroids would appear to make that impossible as he will have to be on them for about 4 weeks to account for 'weaning off' time. We would have refused steroids if we had realised, especially as it seems the OMS will more than likely disappear after kidney removal.
Does anybody else have knowledge of this extremely rare problem? Only 1 in 10,000,000 people get OMS each year and of those only 2% will have it as a result of kidney cancer. It appears that the immune system goes into overdrive to rid the body of the malignancy so it seems that this could have saved his life by alerting us to the cancer in the very early stages. Of course it still has to be confirmed that the tumour is malignant but the immune system would not react this way to a benign tumour.
We are now researching the problem but there is not a lot of information on the two conditions in tandem. Any input would be greatly appreciated.
Thanks
Carole
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brainman
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gurney696
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Joined: 04 Aug 2008
Posts: 3
Location: S Wales
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| Posted: Tue Aug 05, 2008 6:27 am Post subject: Renal Cancer with OMS |
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Hi Jim,
Thank you for your comments. We haven't had a biopsy yet but they did tell us that the immune system would not have reacted that way to a benign tumour so it seems they are pretty certain that it is malignant.
I will check out that website. I have looked at quite a few so may have seen it already. The trouble is OMS on it's own has lots of info but there is not so much when in tandem with renal cancer, because of the rarity.
OMS on it's own is normally viral and is treated differently. It does seem that the OMS should disappear if and when the kidney is removed.
There will be a meeting about his particular case tomorrow, fingers crossed, so we just have to play the waiting game again at the moment to find out what they intend to do.
Thanks again.
Carole |
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brainman
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Location: Tennessee
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gurney696
New User
Joined: 04 Aug 2008
Posts: 3
Location: S Wales
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| Posted: Mon Aug 11, 2008 6:27 am Post subject: Renal Cancer with OMS (how long between diagnosis & surg |
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Thank you Jim.
Well we have the results of the meeting and have been told it is cancer (no biopsy has been done) but very early stages, thank goodness. They are probably going to do keyhole surgery and we have an appointment with the surgeon on 21st of this month, with the surgery pencilled in for 17th September. This is a longer wait than we had hoped for and indeed longer than they told us originally. Is this because it is such early stages that a bit longer won't be a problem? What is the normal length of time between diagnosis and surgery?
Our biggest problem with the wait is the OMS Dave has with the kidney cancer. I am sure most patients when diagnosed with early stages of kidney cancer can live a pretty normal life but Dave is virtually confined to the sofa as the OMS symptoms mean he can't walk and even has problems transferring to a wheelchair. So that's another 5 or 6 weeks of inactivity and feeling awful.
We are wondering if it's worth going privately.
Any comments would be appreciated.
Carole |
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