Recent diagnosis of Hemangiopericytoma

[kmorse4219]

[sschmidt]

kmorse,

sorry to hear about your husband. My wife has been fighting this disease for some time. please call us when you get a minute and I will share all the information we have.

Steve Schmidt 630 665-7492 leave a message if you get the machine

[oztrev]

Hello kmorse,

I was diagnosed with malignant hemangiopericytoma in Feb 07 when a large tumour (12.5 cm diameter) was removed from the external wall of my bladder. This is a very rare cancer and I have recently discovered that it is one that can be caused by exposure to Agent Orange. My name is Trevor and I am a Vitenam Vet. I live in South Australia.

Following removal of the cancer I have had a bone scan and 6 weeks of radiation to the pelvic area. Interestingly, the radiotherapist who treated me told me he had treated 3 cases in his lifetime- he recently retired. He said that it does respond to radiation from his experience. He thought I should also have chemotherapy but my urologist/surgeon told me he could not find any information on effective chemo for this cancer. He thinks I would be a "guinea pig" and could suffer badly as it would all be experimental, so he has not recommended it. I had a bone scan following my op and it was clear. I had a CT scan in September 07 and it was clear. I have recently had another CT scan (7 March 07) and am awaiting results. My urologist plans to continue CT scans at 6 monthly intervals and monitor developments in chemotherapy for likely candidates.

I hope this information is of some help to you. Let me know if you are interested and I can provide more detail and keep you updated on my journey. I feel quite well and am not suffering any disability at this stage, but it is early days.

All the very best to your husband - I hope that his treatment goes well.

My very best wishes,

Trevor

[oztrev]

[Zdenek]