Recent diagnosis of Hemangiopericytoma

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Recent diagnosis of Hemangiopericytoma

Postby kmorse4219 » Sat Nov 10, 2007 3:53 pm

My husband was recently diagnosed with a possible Hemangiopericytoma that has grown in the area of the Pituitary gland. It has taken almost 8 months to finally get someone to try to diagnose the tumor cells that were removed at Cleveland Clinic Feb 14, 2007. The surgery ended up being only a partial resection and the tumor has rapidly grown back. We are unable to get a prognosis of any kind from our doctor. (We have transferred to Ann Arbor) I would like to know what we could expect and if there is any place better that another to get treatments and opinions. The only option that we have been given is radiation treatments, but the doctor cannot say for sure if my husbands tumor will respond to radiation. He has had a thorough eye exam and multiple CT scans to look for any tumors anywhere else in his body. They found nothing else. If anyone could share their experience or share anywhere to get additional info it would be appreciated.
kmorse4219
 

Postby sschmidt » Fri Feb 08, 2008 10:49 am

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
sschmidt
 

Hemangiopericytoma

Postby oztrev » Mon Mar 10, 2008 11:54 pm

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
 
Posts: 4
Joined: Thu Mar 06, 2008 6:25 am
Location: South Australia
Cancer Diagnosis: haemangiopericytoma
Relationship To Patient: Self

Postby oztrev » Fri Mar 28, 2008 10:21 pm

Hello kmorse,

Further to my reply of 6 March 08, I have just received results of my last CT scan of 7 March 08. It is clear. There is some thickening of the bladder wall in the area of resection of the tumour but this is normal following radiation treatment. There was local lymph node invasion around the tumour site, but the current CT shows no enlargement of any lymph glands in the area. So far, so good. My radiotherapist (recently retired) told me he had treated 3 cases of hemangiopericytoma over his career and that in his experience it responds well to radiation treatment. My feeling is that the dose has to be fairly high. He spread my treatment over six weeks rather than 5 to keep the individual doses down a bit. Its the total dose that counts.

If you would like more info pleae let me know.

In the meantime, keep the chin up, be positive and draw on the support of friends and family.

Best regards,

Trevor
oztrev
 
Posts: 4
Joined: Thu Mar 06, 2008 6:25 am
Location: South Australia
Cancer Diagnosis: haemangiopericytoma
Relationship To Patient: Self

Postby Zdenek » Thu May 01, 2008 5:28 pm

Trevor,

I would like to connect over an email - mine is:
"zdenek.holy@earthink.net" if you care to write, please read my introduction to this forum.

Thanks in advance,

-Zdenek
Zdenek
 


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