Rare Cancer Support Forum

hi all. i had a 4cm in size hemangiopericytoma to the back of my head removed in 2002. i had 5 weeks of radiation as this is considered a soft tissue sarcoma. i have been left with balnce problems, and cognitive deficits. lots of pain. this is my second time having cancer, but they are unrelated to each other.

at least there is a place for us "special" people to go

love to share with you. sometimes my posts are slow as i am in bed about 85% of the time....however, i hop on the computer and at least read the posts frequently.

servivur

Hey, I have HPC too. Guess I'm one of the special people too! Lower neck area. Surgical resection May 2005 and 6 weeks radiation in Sept/Oct 2005. CT Scans every 6 mos from then until 20 years from now! See the complete story in the introduction thread in the Soft Tissue Sarcoma forum. Hope your pain gets better!

Peace~

Lonnie

Lonnie and Marjorie, Thanks for the warm welcome. Yes, I would like to share with you, and learn more about this cancer. I am told that the type of hemangiopericytoma I have will only come back in my brain. I am praying it does not come back. You know we can only trust God to take care of us.

They are learning more and more about this Tumor. I've been told it can come back even after 20 years. I would like to know what you all have been told about this?

Allie

Another HPC and "special place" member

It seemes there are not many members in this forum, but i would love to talk or support others with this tumor.

thanks

I should add to this, since I just joined the forum. I also had hemangiopericytoma - I discovered it in December of 2003 at the age of 21, had it removed in January of 2004 (in Kingston, Ontario at Kingston General Hospital) and recieved seven weeks' of radiation therapy in May of 2004 at Princess Margaret Hospital in Toronto, Ontario, Canada. I've just graduated from a checkup every four months to a checkup every six (for a grand total of ten years).

I'm very fortunate, because PMH has one of the lowest sarcoma re-occurance rates in the world.

Oh, and I suppose I should mention that I found it in my right shoulder... it was about the size of a marble when I found it on December 1st, and bit smaller than a baseball when I had it removed on January 27th, so it was particularly aggressive.

Took forever to get a pathology for it, too.

Hello all: I am an HPC survivor syself. I just got my first set of post radiation MRI results back and there was no cancer to be found! At this point, my oncologist thinks I should be in the clear for at least 5 yrs and have a probable life span of 70yrs, which is great news to me. Thanks for all your support.
Regina

Hi All, I had a HPC on the outside of my knee and it had been there since the early 1980's. It was a lump and the colour of a bruise. In 1994 I had a varicose vein injected to collapse it, the doctor injected the lump as he thought it was an other vein. The lump was very painful to the slightest touch. In 2001 I had varicose veins removed from both legs and the lump. I found out it was HPC 10 days later when I went back to get the stitches out. I then had another op 2 weeks later to get margin on it. I had no other treatment and see my oncologist once a year for a check up. Any lump or mole even if it looks ok my local doctor gets it remove for testing just in case. My oncologist told me that I was only the second case in Australia to have this cancer outside the abdomen and my choice to get my veins removed had save my life. I have had to go through this on my own, my families response was "it wasn't real cancer was it". When the doctor went back in to get the rest of it, it had grown in size by about 10mm in the 3 weeks between ops.

I would hope that everyone can have a positive outcome as I have.

Well I must be the third person in Australia to have this thing.

To date I have had 4 haemangiopericytoma brain tumours and one bacterial clostridium infection.

I try to eat organic food, but occasionally eat crap food as well, i.e. road trips.

I also work full-time, play with my kids, drive and so on.

Having an infection was a bit rough, and got close to killing me. It was a bit of a grey time and the treatment seems to have damaged my bone marrow.

Luckily in Australia we have an amazing public health system, and I now get an intragam infusion once every 4 weeks which replaces what my bone marrow has stopped producing.

Anyway, feel free to respond with any other questions/observations.

All the best

Graham