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Adult Rhabdomyosarcoma

Ebyrd
Posts: 1
Joined: Jan 2010

I have recently been diagnosed with Rhabdomyosarcoma. I am 22 years old and I have a nine month old son. I have had one surgery and am awaiting a second. Does anyone know of any hospital that specifically deals with Rhabdomyosarcoma? Im having trouble finding a Doctor who has seen it before. Also I would love to talk to another adult who is going through this. Thanks.

Deli4gs
Posts: 9
Joined: Jan 2010

Has anyone heard of suvivors of alveolar rhapdomyosarcoma (cancer of the soft tissue)? Please email me at Deli4gs@aol.com
Thank you.

Tom C.
Posts: 11
Joined: Dec 2009

Hi. I am 52 years old. I was diagnosed with rhabdomyosarcoma when I was 17. At that time, I was given a 25% chance to survive. I went to Memorial Sloan Kettering Hospital in New York City. They have seen many cases of rhabdomyosarcoma and I am here today because of the treatment course they put me on. I do not know where you live in relation to New York, but I live in New Jersey which made the commute to New York somewhat easier.

Log onto their website at www.mskcc.org to find more information that may be helpful to you.

You can win this fight, I am proof of it. Be proactive in your search for treatment and ask questions all along the way of your doctors. Remember, it's your life and you are entitled to answers from the doctors treating you. Just don't accept a doctor's reason for a treatment course without asking questions and understanding why you are undergoing a particular surgery or course of action.

Best of luck and care to you.

Tom C.

cloud111
Posts: 1
Joined: Dec 2011

Thank you for your post. You've raised my spirits just knowing you've been a survivor for as many years as you have. My son was diagnosed in 2008 at 7 1/2 years old, he is 11 now, and healthy as ever.

InvictusAngel's picture
InvictusAngel
Posts: 93
Joined: Nov 2009

I was diagnosed with Rhabdo in Sept and had 4 surgeries and now undergoing 44 weeks of chemo my doctor is a specialist of rhabdo her name is Kirsten Leu and shes in Omaha Nebraska at Methodist hospital in the Nebraska Cancer Center. She is awesome as a couple other ppl on here can tell you she is their doctor as well.

joskt0204
Posts: 1
Joined: Feb 2010

My husband was diagnosed with pleomorphic rhabdomyosarcoma in February of 2006. He had surgery (first, because the biopsy indicated it was benign), radition, and four round of MAID. He is doing very well, four years out (knocking wood). There is hope. My husband's treatment was managed by the sarcoma center at Vanderbilt in Nashville, although he did his radiation and chemo locally.

Katy

Nitoalsh
Posts: 2
Joined: Sep 2010

Katy-
I was just diagnosed...found in the thigh. I was curious about your husband's primary site and treatment plan. Mine has not begun.

noARMS's picture
noARMS
Posts: 7
Joined: Jun 2010

Im a 25 year old male in remission for the second time. I was diagnosed with stage 4 Alveolar Rhabdomyosarcoma in August 2007 when I was 23. I was treated at Seattle childrens hospital and went through a clinical trial for my first treatment. I had multiple tumors on my pelvis and spine. The treatment was extreme but it worked quite well. Dr. Hawkins is my doctor and i trust everything he does.

jima
Posts: 1
Joined: Nov 2010

I have just recently been diagnosed with Rhabdomyosacoma and am terrified. I am 60 years old and have a 12 year old son. I went in two weeks ago thinking I needed a hernia surgery and when they went in they found a tumor wrapped around the tube and vein going into the scrotum. they took a biopsy and discovered it was cancer. The problem is there is not a lot of research on this type of cancer because it is rare and almost nonexistent in adults. I would love to communicate with you and find out how you are doing. Did you find anyone who is familiar with this cancer? please reply Thank you.
i would like to communicare with any adult who has or has had this cancer.

angiecarol's picture
angiecarol
Posts: 8
Joined: Aug 2010

Terrified is definitely understandable. It's rough hearing that you have cancer.
I was diagnosed with rhabdomyosarcoma in May '09 and have been in remission for 8 months.

My cancer was in my left arm, but either way it's still cancer. Yes it is a rare cancer, but it's still treatable. You're going to have hard days but just remember it's all worth it.
I had 28 days of radiation and 10 months of chemo. but I'm here in remission :)

I wish you all the best and hang in there.

Raul
Posts: 1
Joined: Sep 2011

UCLA - Dr. Arun Singh and Dr. Bartosz Chiemlowski. Sarcoma Specialists. (Los Angeles)

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Marine survived afganistan only to come home and find out he has this cancer Alveolar Rabdomyosarcoma...I am a color rectal cancer surviver and found alot of help on this network. I wanted to send one of my best friends here who happens to be the father of this yourg Marine in Boston being treated at the Dana Farber. But dont know if there is anyone here to chat with...if so let me know, whether its this title or another. someplace where he can get and share info.
Thanks and good health to all,
Tom

Ziliang
Posts: 1
Joined: Jun 2012

I was diagnosed with rhabdo in Feb this year. This is rather rare form of cancer, making up a few percentages of soft tissue tumor. Certain factors that are needed to enhance the survival rate medically. Experienced surgeon, pathologist and oncologist and more importantly, the integrated treatment plan from all three above. Memorial Sloan Kettering, NY is one of the renowned places to treat soft tissue sarcoma. Places like MD Anderson Cancer Center is another option.

I am having treatment in Mayo Clinic, Rochester, MN. I, fortunately, happened to meet those three important factors and am receiving an integrated treatment there.

During conversation with my oncologist, I noticed an experienced oncologist's vital role in providing the best care possible. And the CONFIDENCE that an experienced oncologist gives you enhance your fighting capability in this tough journey!!

If you want to talk, because I am having treatment right now and want to help out others and share story with others as long as that can make difference, please contact me through email: cheung.tzeleung@gmail.com

daren73
Posts: 1
Joined: Jun 2012

i was diagnosed with Embryonal rhabdomyosarcoma (neck) in june 2009,i had 3 months of chemo (iva) then 11 hour op to remove my neck musscle,3 months more of chemo ,6 months recovery then back to work and to this date i have no return of , checks are done every 12 weeks just in case it is a very tough journey but can be done just keep thinking positive it can be done

Tom C.
Posts: 11
Joined: Dec 2009

I am 55 years old. I was diagnosed with rhabdo when I was 17. I went to Memorial Sloan Kettering Hospital in New York City.

Back in the 1970's, the doctors hit upon a treatment protocol that worked very well for me. After two surgeries at Sloan Kettering, I underwent radiation treatment for a little over six weeks and chemo for just under two years. I cannot agree with you more about how important it is having confidence in your doctor's ability to know what is the best course of treatment for you. Everyone reacts differently to their medicine but I found that by trying to continue to get on with my life in as normal a way as possible, getting plenty of rest, eating well, avoiding large crowds of people especially in cold and flu season, along with following doctors orders, helped make the two years of chemo a little easier to get through.

I hope you continue to progress well through your treatment.

Tom C.

Rhabdogirl24
Posts: 4
Joined: Jul 2012

I wish I could be more helpful. I was diagnosed with Rhabdo when I was 17 and just made the cut off to be seen at Denver Children's. Dr Albano is one of the best. I was only given a 40% chance but after 35 radiation treatments and 18 rounds of chemo I am now 6 years cancer free. Maybe you could call Denver Children's and leave a message for them to recommend somewhere.

Litchic452
Posts: 3
Joined: Nov 2012

I also have rhabdomyosarcoma. I was diagnosed several months ago. I don't know that I have much information to share but I will share what I know. You said you had one surgery already. Was that to remove the sarcoma? Has a surgeon gone in again to check the margins and take lymph nodes? Do you have a good oncologist?

stubbysmom
Posts: 9
Joined: Dec 2012

I'm new to this sight but my hubby was diagnosed with Rhabdo in his sinus region and behind his left eye and it went up against his brain.  That was a year and a half ago.  His was inoperable.  He did I think 7 and a half weeks of radiation treatments and 9 months of chemo.  He stopped his chemo 4 months early because it almost killed him and gave him really bad nerve damage.  My advise when you are on Chemo, don't be tough, bug your oncologist even if they are a long drive away.

klenriquez01
Posts: 1
Joined: Feb 2013

I was dx in Aug. w/ a Rhabdo in my left maxillary sinus and left eye. What tx plan was your hubby on? I have really bad neuropathy in my feet that has caused us to decrease the Vincristine. How is your husband's neuropathy now?

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