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Adult Rhabdomyosarcoma

wifemom-me
Posts: 1
Joined: Dec 2012

My husband, 43, was just diagnosed with Rhabdomyosarcoma yesterday.  His mass is in his chest.  CT scans have not found it elsewhere.  I am having a really hard time finding information on this cancer online.  Apparently, this is a rare cancer and exceptionaly rare to be found in adults.  I would appreciate hearing from anyone with information to share with me.  We are supposed to go to IU Medical Center next week for a consult.  I am grasping at straws here.  Thank you.

Completely Off-Guard's picture
Completely Off-Guard
Posts: 5
Joined: Mar 2013

Good news wifemom-me,

 

Your husband is not alone.  I am 42 years old.  I was dianosed with having Embryonal Rhabdomyosarcoma in June of 2012.  Like your husband, my doctors found a mass in my chest.  Interestingly enough, my dad had the same thing at about the same age.  I have since had the tumor resected, reconstructive surgery for the ribs that were removed (six to be exact).  I have had two more surgeries to "fix" the titanium rods that were placed in my body to act as "ribs".  Each one of the four titanium rods have broken.  Right now, I'm in pain on most days which is somewhat controlled by the pain medicines that I am taking.  I don't know what you religious beliefs are, but I know that it is God who has brought me this far.  So, don't lose faith.   Please let me know if need or want to talk.  Oh, by the way.  I wouldn't have made this far without my wife who has been my absolute rock.  Without her, I would be completely defeated.  I am glad that she is in my life because I really don't know what I would do without her. 

Completely Off-Guard's picture
Completely Off-Guard
Posts: 5
Joined: Mar 2013

Good news wifemom-me,

 

Your husband is not alone.  I am 42 years old.  I was dianosed with having Embryonal Rhabdomyosarcoma in June of 2012.  Like your husband, my doctors found a mass in my chest.  Interestingly enough, my dad had the same thing at about the same age.  I have since had the tumor resected, reconstructive surgery for the ribs that were removed (six to be exact).  I have had two more surgeries to "fix" the titanium rods that were placed in my body to act as "ribs".  Each one of the four titanium rods have broken.  Right now, I'm in pain on most days which is somewaht controlled by the pain medicines that I am taking.  I don't know what you religious beliefs are, but I know that it is God who has brought me this far.  So, don't lose faith.   Please let me know if need or want to talk.  Oh, by the way.  I wouldn't have made this far without my wife who has been my absolute rock.  Without her, I would be completely defeated.  I am glad that she is in my life because I really don't know what I would do without her. 

VANESSA POWELL's picture
VANESSA POWELL
Posts: 2
Joined: May 2013

I Too was caught off guard with this disease! I am a 35 year old mother of six living in las vegas nv. I was diagnosed march 2012. At The time of diagnosis I was stage IV metastatic. My primary site was in my right hand. The tumor began to grow in september 2011, by march is was the size of a lemon on top of my hand. hard and very painful. It spread to my femur, lungs, diaphram, liver, and clavical. I have just completed week 42 of 54 week chemotherapy regimine as well as a 13 radiation treatment. I was very sick at the beginning and the treatment is very hard but I am happy to say I am still here and have faith that i am going to beat this cancer. My concern is, are any of my children at risk for this happening to them? Where did it and why did it start in me?

Litchic452
Posts: 3
Joined: Nov 2012

I was diagonsed with adult  rhabdomyosarcoma in August of 2012 in my right chest wall. It was so rare that they had to send the tumor to the Mayo Clinic to figure out what it was. It was hard for me to find information on it too. What really helped me is the information I got from my oncologist. She even recommended some websites to me, but unfortunately, I can't recall the website addresses right now. My advice would be to get some information from the oncologist. Have you found any information on this website? I am currently in remission, so it is beatable. Never lose hope.

detailman
Posts: 1
Joined: Aug 2013

hello i am 45 and i was diagnosed in 2010 with stage 4 colon cancer and have been doin chemo for 3 years now and have been doin good with it but now  i have just been diagnosed with rhabdomyosarcoma in my sinuses its a small tumor in my nose at the back of my throat it has stopped me from breathing through my nose and now it has blocked my hearing has anyone ever heard of getting this in this location? i have cancer that runs deep in my family but only 1 rhabdomyosarcoma it was a 6 yr old nephew in 2006 and i lost a 14 yr old son in 2007 who was our only child  to epitheleoidfibrosarcoma the chemo destroyed the connective tissue in his heart causing heart failure.and my mother and grandmother both had breast cancer.....i think i might be on to something i have been trying something that supposed to kill cancer while i wait for the drs to do whatever it is there gonna do and i think its shrinking the tumor! i have been doing this for 2 weeks now every day and this morning i was able to breath in and out through my nose for the first time in months so it seems to be shrinking! i will know more monday i go for a pet and ct scan and then tuesday to little rock with the results to a specialist to see if he can remove it! 

 

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