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Well i'm still dizzy - my dad was diagnosed yesterday with angiosarcoma in the 7th 8th and 9th vertebre today he was pretty muched shoved out of the hospital with a hand full of dr. cards to call and make appointments.  My sister brother and I asked a few questions to the doctors but none of us had the nerve to ask how long.  Is this a good question to even ask??  My mom passed away over 8 years ago and its been just us and my aunt (dads sister).  We were told that it is stage 4 no surgery possible because of the location so just radiation and chemo.  WHAT?????  He went in over 2 weeks ago with horrible pain in his back, which we thought had to do with his heart---he had a quadruple by-pass 6 mos. after my mom passed and then the following month dissected his aorta - which was pretty much a miracle that he lived through that--he is a stubborn dago though!!  he has really good spirits but he has very selective hearing-i had to make sure i said cancer a few times so he knew that thats what he has.  so m uch more to say but just kinda pooped out right now.  I would love any and all help that anyone can throw my way.............

Hi,

My dad was diagnosed with sarcoma last year, and we asked how long. And what they gave us was an estimate. They don't really know themselves in my opinion. It could be less than a year to who knows how many years. I would ask, but take it with a grain of salt? Get your personal affairs in order as soon as possible, but hope for the best. It's been a little over a year for my dad so we're extremely grateful for that.   

 Hope that helps a little.

-laivly 

 

 

 

On 1/22/2009 annkoz wrote:

Well i'm still dizzy - my dad was diagnosed yesterday with angiosarcoma in the 7th 8th and 9th vertebre today he was pretty muched shoved out of the hospital with a hand full of dr. cards to call and make appointments.  My sister brother and I asked a few questions to the doctors but none of us had the nerve to ask how long.  Is this a good question to even ask??  My mom passed away over 8 years ago and its been just us and my aunt (dads sister).  We were told that it is stage 4 no surgery possible because of the location so just radiation and chemo.  WHAT?????  He went in over 2 weeks ago with horrible pain in his back, which we thought had to do with his heart---he had a quadruple by-pass 6 mos. after my mom passed and then the following month dissected his aorta - which was pretty much a miracle that he lived through that--he is a stubborn dago though!!  he has really good spirits but he has very selective hearing-i had to make sure i said cancer a few times so he knew that thats what he has.  so m uch more to say but just kinda pooped out right now.  I would love any and all help that anyone can throw my way.............

Oh sweetie... I feel your pain and confusion! I lost my Dad just a little over a week ago to soft tissue sarcoma. He fought a valiant fight for 3 years even after having mets to the lungs and brain! His cancer originated in his right thigh and by the time he completed his radiation treatments and could have the tumor removed, it weighed 13lbs! I remember them saying "it's sarcoma" and until that point, I had never even heard of that cancer. I immediately went to the web only to find very little info. and grim statistics! My MOST IMPORTANT advice is to get to a cancer center that specializes in sarcoma! It is a very rare cancer and can't be treated in the same manner as other cancers! My goal since losing my Daddy is to make sure no one feels as lost and uninformed as we did! San Antonio has a sarcoma research center and a woman by the name of Dr.Mita is there. Do whatever it takes to get somewhere like this! No one told us that with my Daddy until it was too late and the truth of the matter is, most oncologists just don't know enough about sarcoma unless they specialize in it! I will pray for you and your Father and if you ever need to talk, just message me! God bless your family! Don't lose hope & DON"T give up!

Julie

 

On 1/22/2009 annkoz wrote:

Well i'm still dizzy - my dad was diagnosed yesterday with angiosarcoma in the 7th 8th and 9th vertebre today he was pretty muched shoved out of the hospital with a hand full of dr. cards to call and make appointments.  My sister brother and I asked a few questions to the doctors but none of us had the nerve to ask how long.  Is this a good question to even ask??  My mom passed away over 8 years ago and its been just us and my aunt (dads sister).  We were told that it is stage 4 no surgery possible because of the location so just radiation and chemo.  WHAT?????  He went in over 2 weeks ago with horrible pain in his back, which we thought had to do with his heart---he had a quadruple by-pass 6 mos. after my mom passed and then the following month dissected his aorta - which was pretty much a miracle that he lived through that--he is a stubborn dago though!!  he has really good spirits but he has very selective hearing-i had to make sure i said cancer a few times so he knew that thats what he has.  so m uch more to say but just kinda pooped out right now.  I would love any and all help that anyone can throw my way.............

Hi Ann,

I wish the very best for your father. What caught my eye in your post was the asking of the "How Long" question. I have soft tissue Sarcoma, im 51 and in stage 4. I have been told that to do anymore surgury (i have had 4) or to do anymore radiation (66 treatments all together) would be a waist of time. As new Sarcoma could appear right after getting rid of others. So I pondered the "how long" question for a time. Playing what i call the "what if" game in my head........what if this or had done that or tried this. Worked my self into a pretty good depression. So I talked to my doctor on how long. He said that i have a less likely chance of making 10 years than a chance of making of making it that long. He also said that it is almost impossible to give a real time line. Everyone is differant and everyone's cancer is differant. Thers is nothing that says I will live 5 years, 10 years or 20 years. I finally got to the point of I just needed to focus on today. Spend my time with the ones I love and not worry about how long. I am glad I asked the quetios and asked it a second time at Moffit Cancer Center in Tampa where I have gone for a second opinion. They would not give me a time line at all. I guess what i'm trying to say is. Hey howlong is not as important as how you spend that time. When you focus on today and being with that person you will be amazed at the things that seemed so important, just are not. Whats important is the good use of the time you have.

I hope this helps. I don't respond very often to posts and just signed up for this site. Keep in good spirits, you never know what may come your way. Moffit Cancer has told me of a clinical trail for a new drug thats targets Sarcomas. I hope to enter this trail next month.

Hi Julie-

My name is Amanda and my husband has a sarcoma in his left leg. Docs give him 6months to a year, he was in the Military and retired. does your dad know how he got his? thanks amanda

 

On 5/25/2009 murff71 wrote:

Hi Julie-

My name is Amanda and my husband has a sarcoma in his left leg. Docs give him 6months to a year, he was in the Military and retired. does your dad know how he got his? thanks amanda

Amanda,

First, let me say, I'm heartbroken to hear about your husband! I do feel your pain! My Daddy was also retired military! He was a Chief Master Sgt. in the Air Force.

We were never really told "how" he got it. But, he had a knee operation three months before he was FINALLY diagnosed on the same leg his tumor appeared in! I have read a lot of research on "metallic induced sarcoma" and feel like the scope used to perform his knee surgery probably caused the onset? Doctors will say there is no way to figure out how you get sarcoma, but research shows many ideas that prove otherwise (in my opinion)! If your husband's tumor is in his thigh, which my Daddy's was, why are they giving him such a grim diagnosis? Is it inoperable? Has is already caused mets? I hope that you have sought an opinion from a doctor specializing in sarcoma. I don't know your husband's complete diagnosis, but it seems a bit early to be estimating a 6 month lifespan for him! I will be praying for you, your husband, and your entire family! I know how this affects a family!

DO NOT give up yet! There are many treatment options! Don't let your doctor tell you otherwise! Get online, dig for yourself! Google "new hope for sarcoma patients"! There are some very promising treatment trials in San Antonio at the sarcoma research center! We just didn't find them in time to get my Daddy there before the sarcoma took over his whole body! RUN DON'T WALK to a specialist! Don't give up faith! How old is your husband? You can fight this cruel disease even though it doesn't fight fair! It's all in the timing and moving as fast a possible!

Let me know if I can do ANYTHING to help you! I will do whatever I can to assist you! Even if you just need a shoulder to cry on or someone to rant to about how unfair this disease is... you can talk to me! My Daddy's battle may be over but I'm fighting the war in his name!

Blessings,

Julie

Julie-

What was your daddy's units name was he a cop, or med tech ect..

you realize you probalby have a claim against the VA I have an attorney and we are pushing forward with a law suit, he says we have a damn good case. call me if you like honey and thanks again.

amanda

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Warm Wishes

my husband is 42 and retired in 2005

amanda

Julie honey COMPASS won't let me pull up what you wrote. CALL ME PLEASE

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 I AM DESPRITE!!!!! Hospis was here and hooked him up.

Love amanda