hemangiopericytoma

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hemangiopericytoma

Postby marjorie » Sun Jan 22, 2006 9:23 pm

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 :applause:

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
marjorie
 

Postby ljrhyne » Fri Dec 15, 2006 7:48 pm

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
ljrhyne
 

Thanks for the emails

Postby Allie » Mon Apr 09, 2007 7:06 am

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 :lol:
Allie
 

Postby onedayatatime » Mon Oct 08, 2007 11:59 am

My husband was diagnosed with hemangiopericytoma in April of 1995. He was initally told it was a benign meningioma with aggressive cells. He had radiation following surgery and we had about 11 wonderful years. He has now been diagnosed with multiple metastasis in the peritoneum. Please keep scanning and following up as it could make a big difference in your treatment options. No one ever told us the final diagnosis and we never saw an oncologist until 2005. The silver lining is that we still have a good quality of life and the tumors seem to grow very slowly, at least for him.
onedayatatime
 

Postby AngelaSue » Wed Oct 17, 2007 3:51 pm

Another HPC and "special place" member :smile:

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

thanks
AngelaSue
 

Postby Johnny Sarcastic » Thu Nov 08, 2007 12:41 pm

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.
Johnny Sarcastic
 

Meningial Hemangiopericytoma

Postby rame1804 » Fri Dec 14, 2007 9:28 am

The year 2005 had to be the best and worst year of my life. In January 2005, my husband and I purchased our first home and in March 2005, I gave birth to our first child Lucy Ann. Life was going as planned until September 7th, 2005 when I was told to go to the Emergency Room for a CAT scan of my head. This was the turning point for what started out as a phenomenal year. On September 7th, I was diagnosed with a large brain tumor. At 29 years old this is the last thing I expected to hear, but was ready to fight for my life! After my diagnosis the following occurred:

 September 8, 2005-I was rushed down to Columbia Presbyterian Hospital in NYC for treatment. I was put in for a minor surgery where they embolized the brain tumor and cut off 60% of the blood supply being fed to the area.

 September 9, 2005-I went in for a 10-hour craniotomy where the neurosurgeon was able to successfully remove 99.9% of the mass. Despite the embolization the night prior I did lose 4 liters of blood during surgery and was very close to not making it through the procedure. I required blood transfusions while on the operating table to help stabilize my body. Since I was young and in good health I made it through surgery successfully. After I came out of anesthesia, I was alert and in the PACU. I continued to be monitored and receive blood transfusions to replenish what I had lost during surgery. Subsequently my body had a negative reaction to the amount of blood I was receiving post-operatively and I went into Flash Pulmonary Edema. My heart began to fail and my lungs collapsed and began to fill with fluid. This was the first time I was scared, but knew that I had a baby I needed to get home to. I was stabilized and sent to the neuro critical care unit after the incident.


 September 12, 2005-I went home to my 5 month old baby. This was the best day of my life and the first time I cried during this entire ordeal.

 September 20, 2005-I went back for a follow-up appointment to Columbia with my neurosurgeon who removed the staples from my head and was prepared to speak with us about the pathology of the tumor. The doctor said “We consider this tumor aggressive and we are recommending radiation to prevent a local reoccurrence.” The doctor went on to explain that I had a right middle cranial tumor, which had multiple branches. It invaded my right orbital area and eroded my right skull base. The tumor was 6X4 CM. The tumor was considered a WHO grade II hemangiopericytoma, which is a very rare malignant brain tumor.

 October 10, 2005-I came back to work part time.

 October 24, 2005-Decemeber 2, 2005-I went through radiation treatment at Albany Medical Center.

 January 23, 2006-I came back to work full time as a changed woman, not just a young professional, a mom, a sister or a wife, but a cancer survivor.

Each day is a true gift to me. I am eternally grateful for the excellent care I received, the support and flexibility I was afforded from my employer, the out pouring of love that I was given by my friends and family, but most of all I am proud of the strength and determination I found within myself to live. Cancer pushed its way into my life and I was able to push it out and reclaim my life back.

I just was told this Nov 07 that I have two new lesions. One in the bone of my skull (7mm) and one in my lower left lung (4mm). Since these areas are so small they are goign to rescan me after x-mas and make a decision in terms of surgeries. Since this cancer likes to spread to the lungs, liver and bones these new areas will most likely need to be removed. I will keep you informed as things progress with this.
rame1804
 

a little confusion

Postby AngelaSue » Fri Dec 14, 2007 9:38 am

so is a hemangiopericytoma always concidered cancer? My doctor was never clear on this when discussing the pathology. he told me it was aggressive, and when I asked the "grade" he did just said they did not grade these types of tumors. I've never been sure if I actually have had "cancer" or not and this is frustrating me.

Any info is GREATLY appreciated.

thanks,
Angela
AngelaSue
 

Postby Johnny Sarcastic » Fri Dec 14, 2007 11:42 am

Rame - That's an incredible story. I'll certainly think of you over this Christmas season, although it's certain that someone with your resolve can see anything through.

AngelaSue - It most certainly is cancer. Hemangiopericytoma by definition is a soft tissue sarcoma that targets pericytes, which are the outside layer of blood vessel tissue.
Johnny Sarcastic
 

The Word Aggressive

Postby rame1804 » Sat Dec 15, 2007 5:19 am

Angela Sue--the doctor used the same word with me too "aggressive" when I went back for the pathology. I think they try to avoid the word cancer as it has this "scary" undertone. Anyway, I walked out of the doctors office not realizing it was cancer---just thinking I had an aggressive tumor and needed post surgical radiation. It was not until I met with a medical oncologist and I asked the question---is this cancer and he paused and looked at me and said yes--you had a cancerous brain tumor. I would ask your doctor to clarify this for you, but thought I'd pass along this information with you.

Jonny, thank you for sending all the positive thought my way. Life is good.
rame1804
 

Re: hemangiopericytoma

Postby meezergirl » Thu Mar 22, 2012 2:35 am

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! :cheer: 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
meezergirl
 
Posts: 3
Joined: Sun Jan 29, 2012 12:57 am
Location: Hawaii; native Texan
Cancer Diagnosis: hemangioparicytoma
Relationship To Patient: Self

Re: hemangiopericytoma

Postby Longleat » Sun Sep 22, 2013 4:06 pm

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.
Longleat
 
Posts: 1
Joined: Sun Sep 22, 2013 3:22 am
Cancer Diagnosis: Haemangiopericytoma
Relationship To Patient: Self

Re: hemangiopericytoma

Postby Graham » Thu Sep 04, 2014 5:53 am

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
Graham
 
Posts: 1
Joined: Thu Sep 04, 2014 4:26 am
Cancer Diagnosis: haemangiopericytoma
Relationship To Patient: Self


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