Hoping to find another similar case….

1 minute read time.

FormerMember

20 Mar 2012

Hi Everyone,

Hoping to find another similar case….My father has just been diagnosed with Mesothelioma following pathology results from a needle biopsy. He was a very strong, fit and healthy 66year old up until Dec 2011. Since then he has rapidly developed debilitating symptoms which have left him effectively bed-ridden. The hospital believe his symptoms are a result of a Paraneoplastic Syndrome caused by
Mesothelioma. He has no normal symptoms of Mesothelioma. There seem to be anomalies and unique elements of his tumour presentation which along with the Paraneoplastic syndrome the hospital do not seem to understand.

The first anomaly is the tumour itself. It seems to look like a single tangerine sized and shaped ball at the centre of his chest, they cannot seem to tell if it is outside the lung or inside the lung from the full
body scan he received. As far as I understand this is not how mesothelioma tumours normally present themselves.

The second anomaly is the symptoms he has which the hospital have attributed to the paraneoplastic syndrome. Something that is more common in Small Cell Lung Cancer. He was admitted to hospital after the rapid onset of various neurological symptoms over the course of two months. These symptoms have been severely debilitating and has affected his vision (blurred, double vision and eyes rapidly moving).It has also affected his balance and he can no longer walk unaided, his motor control; picking things up and hand-eye co-ordination has been affected, mild shaking, his speech has become affected and he struggles at times to be able to get words out, he is also very tired and can only really manage to walk from his hospital bed to the toilet once a day.

Has anyone ever seen or heard of this type of presentation or symptoms with Mesothelioma? Currently we are waiting for the Hospital to make a decision on treatment but they seem to be against surgery. We know that with other types of cancer (such as Small Cell Lung Cancer) they key to minimising long term damage or further degradation of his nervous system due to the Paraneoplastic syndrome can only really be achieved if the tumour (the underlying cause is treated or removed).

Any feedback is greatly appreciated.

robtonysson

FormerMember over 12 years ago

Hello Robtonysson,

I don't know much about Mesothelioma however I will tell you my story and I hope it may help slightly?

My Mum was diagnosed with Small Cell Lung Cancer in November 2010. She did not have any symptoms what so ever of lung cancer (ie cough/wheezing) but she did have extremely high blood sugars (without previous diabetes), very high blood pressure, extreme swelling of stomach and water retention in body, low magnesium levels (on blood test) and easy bruising. We had numerous visits to GP who was perplexed. After much going back wards and forwards with my Mum feeling more and more poorly with these symptoms I took her to A and E and demanded she be admitted for further investigations.

They did a scan and found what they thought to be an enlarged lymph node in her chest, which they werent too concerned about but didnt know what these other symptoms were and told me that it was unrelated (they said my Mum must be diabetic, despite her only a few months previously having being tested for diabetes and being told she was fine!!!, they even had the cheek to send a diabetic nurse to talk to my 7 stone Mum about her diet!! A lady who very rarely eats junk food and hates sweet food!!)

After spending hours doing research on the internet I found that all of these things combined pointed towards paraneoplastic cushings syndrome in small cell lung cancer. I mentioned my theory behind my Mums symptoms to the ward doctor who was doing his rounds. I was shocked and disgusted by his response. He basically said (in front of 5 junior doctors and a nurse) that he had never heard of these symptoms in a patient with small cell lung cancer, when I offered to show him the research I had done on this he laughed and said "I am the one with a medical qualification here, I dont need to read that". Understandably I was very upset and angry and demanded a second opinion from his superior. Within an hour I had his very kind, considerate and undersanding 'boss' sat with me explaining that he too had done a little researach and although paraneoplastic symptoms are relatively rare, small cell lung cancer can present itself in this way. He agreed to test her straight away and she was subsequently diagnosed with small cell lung cancer with paraneoplastic cushings syndrome. (I never recieved an apolology)

Anyway to cut a long story short, what im basically trying to say is, in my experience doctors don't seem to know that much about paraneoplastic syndromes (I have found that numerous times over the past 18 months I have had to explain it to my Mums doctors!!) And also to not be afraid to demand a second opinion! If I hadn't have done this, with the nature of small cell lung cancer, my Mum would not be alive today.

I hope that somebody replies who can give you more information relevant to your situation.

Good luck with everything.

Laura
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