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Postby madcityhkydad » Tue Sep 29, 2009 5:36 pm

A little history on myself with this: when in I was in my early-mid 40's, I initially had a seizure in May '01, then through a CT scan was found to have a mass near the crown of the brain near the working skills area and between the two halves, but strangling a main vein. To further strain the situation 2 weeks later, I had a 2nd seizure were I cracked the 1st and 4th vertebra. Then a surgery to remove the 4.5cm tumor was schedule for late June '01, the surgery was 6 hours and I lost nearly 4 units, but had visitors, phone calls (in/out) by late afternoon and evening. Returned to full activities within a couple of weeks with very few limitations (including playing hockey, not to the knowledge of my medical team).

Pathology determined mass to be a hemangiopericytoma. This was followed up with 3, 6 and annual MRI's, but no radiation.

That was until June '07 when an MRI found roughly 1 cm area of concern with the recommendation for another surgery. The surgery was mid-July,
discharged a little over 24 hours post surgery (could have been sooner but had to wait for Physical Therapist). Back to part-time work the next week, full-time the following week and again with few limitations. Again it was hemangiopericytoma.

In August '07 radiation was not recommended at that time due to the review of post surgery MRI's not exhibiting any immediate regrowth and their 'comfort feel' about the tumor resection, which was followed up with MRI's at 6 month intervals. However, my MRI Feb. '09 showed a potential for re-growth, which was confirmed in August '09.

I had been re-diagnosis with 4 small tumors in the original tumor site (in between the two halves of the brain) from June 2001 this past August 17th by Dr.
Mehta at UWHC. Surgery was performed September 10th, this being the 3rd (2nd done by Dr. Kuo also at UWHC).

I believe I would have been discharged the day following the surgery, however a complication with elevated white blood cell was noticed during the pre-surgery evaluations with the conclusion that I also have a rare leukemia (Chronic Myelogenous Leukemia) that required a bone marrow biopsy the day following the
surgery; thus discharged in 2 days.

I had very little pain for the next couple of days following surgery.

I returned to work the Tuesday following surgery. My follow-up visit with my doctors will be on September 29th to discuss the next course of action, and
possibly suture removal.

As of today (9/29) I have been advised to prepare for radiation (tomotherapy) starting mid-October to radiate the general tumor bed due to the MRI showed a potential tumor cell/spike.

As far as the Chronic Myelogenous Leukemia (CML) goes, I had blood work done in late December 2008 with my blood showing no abnormalities, and being that both of these are 'unrelated'; but both are from my understanding blood related cancers be cautious and be your own advocate. The hematologist has recommended Gleevec to be introduced initially with monitoring, so has anyone been on this medication?

I have been fortunate for the care I have had first with Dr. Behnam Badie (formerly with UW Hospital & Clinics) now at City of Hope Comprehensive Cancer Center, Director-Brain Tumor Program (Neurosurgery), 1500 East Duarte Rd., Duarte, CA 91010. Most recently at UW Hospital and Clinics, 600 Highland Ave. Madison,WI: Dr. John Kuo, Director-Brain Tumor Program (Neurosurgery) and Dr. Minesh Mehta & Dr. H. Ian Robins, both with Radiation Oncology Clinic.
Last edited by madcityhkydad on Wed Feb 08, 2017 8:23 am, edited 1 time in total.
Posts: 1
Joined: Mon Sep 21, 2009 10:15 am
Location: Monona, Wisconsin
Cancer Diagnosis: Hemangiopericytoma
Relationship To Patient: Self

Re: Hemangiopericytoma

Postby sharon » Sat Jan 02, 2010 8:22 pm

I have added this story --> Here in the personal stories section of the website. Please reply here if you have any changes or additions.
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This post should not be considered medical advice. Review all information with your doctor.
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Cancer Diagnosis: adenoid cystic carcinoma of the breast
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