Desmoid Tumor Sarcoma

49 Posts | Page(s): 1 2 3 4 5  Next 

Desmoid Tumor Sarcoma

by getitdone on Sun Jul 13, 2008 12:00 AM

Quote | Reply
Very rare tumor.  Anyone every heard of it or had one?

RE: Desmoid Tumor Sarcoma

by deek226 on Mon Sep 29, 2008 12:00 AM

Quote | Reply
Yes, very rare indeed.  I was diagnosed with a desmoid tumor (aka aggressive fibromatosis) after my ortho-oncologist removed the mass on my trapezoid muscle in April 2008.  (Diagnosis was not made until it could be biopsied during surgery.)  Preliminary diagnosis was "vascular tumor" detected in an MRI.  I'm just about ready to have my second post-op MRI and am so hoping there will be no evidence of recurrence, although I know that recurrence can happen years down the line.  I'd be happy to share any information I've gleaned on the subject!

RE: Desmoid Tumor Sarcoma

by pedsmedic on Sat Oct 11, 2008 12:00 AM

Quote | Reply

My wife has been recently diagnosed with a desmoid tumor. There is a lot of information of the Desmoid Tumor Research Foundation website. www.dtrf.org  

So far to us this has been very confusing as this type of tumor is cancer but is not cancer. meaning it is a tumor that is to be considered benign but is not truly benign due to the fact that it does invade other organs and surrounding structures. Although it is not matastic  which is what makes it not cancer. 90% of patients that have this type of tumor do not die from the tumor but from what we have seen and read it can vary widely as to the quality of life with this type of tumor. 

As far as treatment goes that also varies. currently there is no defined treatment plan. There has been much success with radiation and chemo, but there has been success in other drug trials as well. i would recommend finding a Dr that has experience with desmoids for at least an opinion.

 

please feel free to contact me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

RE: Desmoid Tumor Sarcoma

by CrystalLee on Wed Nov 26, 2008 12:00 AM

Quote | Reply

I am 29 years old and have just had my second surgery for a extra abdominal desmoid. It is located in between my ribs on the posterior chest wall. The first time it was removed they misdiagnosed it and it grew back within three months and was 5cm. I just got the news that I have to come in to discuss treatment options becasue the margins were positive. Does anyone have info on what kind of treatment options I might get?

Thank You

RE: Desmoid Tumor Sarcoma

by ddd555 on Thu Feb 11, 2010 02:50 AM

Quote | Reply

My son was diagnosed with aggressive fibromatisis at age 20. The tumor was surgically removed an returned again two years later. He had the second surgery in 2008 and now the tumor has returned again. Any information and knowledge that you are willing to share regarding pros & cons of treatment options would be very much appreciated.

Thanks

RE: Desmoid Tumor Sarcoma

by SurvivingDemoid on Fri May 28, 2010 02:18 PM

Quote | Reply

I unfortunately have also been diagonised with a desmoid. I had it removed once in 2006 with clear margins. Again in 2008 with clear margins but also opted for internal and external radiation. It came back earlier this year so I just started chemotherapy.

Surgery is a good option for most if they can get it out without too much muscle/tissue damage. Surgery alone has about a 50% recurrance rate. When you move to surgery and radiation you're recurrance rate drops to 40% but the risk of cancer from radiation is there. Chemotherapy drops the recurrance rate to 33%. At least this is what I remember the doctor telling me. The more agressive the less the recurrance rate but the higher the chance of a different type of cancer coming later.

Best of luck to you and your son! These are really tenacious tumors!

Also, www.dtfr.org has lots of info on treatments and studies conducted

RE: Desmoid Tumor Sarcoma

by msbeckyann on Thu Jun 03, 2010 02:50 PM

Quote | Reply

I am 40 years old and had a rather large desmoid tumor (16 cm) removed from right paraspinal muscle three weeks ago, the margins were clear, but very close, at some points, just millimeters. I am now looking at post-op radiation therapy, which comes with its own set of risks, and then hormone therapy.

I am not sure which is worse, the tumor coming back, or the risks of radiation. That is my dilemma. I was told because of its location near my thoracic spine, ribs/lungs that the benefits of radiation outweigh the risks.

Has anyone had a similar experience?

 

RE: Desmoid Tumor Sarcoma

by TriGreg on Fri Sep 03, 2010 06:34 PM

Quote | Reply

I was diagnosed with a desmoid in my left paraspinus on July 1 (I'm 42). They did radiation on me first with surgery in a few weeks. the radiation was pretty easy. It caused some muscular pain and a bad "sunburn" in the area. Regarding the risk, I decided to be as aggressive as the doctor would be. The relative risk of getting a sarcoma from radiation (very low risk), versus the desmoid coming back (moderate risk) and invading my spine, it was an easy decision.

How is the recovery from surgery? My docs are going to be aggressive, but my tumor isn't as big as yours.

RE: Desmoid Tumor Sarcoma

by stiefbears7 on Sun May 29, 2011 07:10 AM

Quote | Reply

Our 12yr old daughter had a large 8.5cm desmoid tumor(also called agressive fibromatosis) removed from her calf in Jan 2011. PETscan after found 2 more in same leg but in thigh. All were deep but removed. The calf has had 3 surgs now will clear margins & thigh once. Had baseline MRI done of entire leg last week and found another one above the thigh ones deep and against sciatic nerve. Just started chemo today. St Jude's has been great but no one really knows what will happen next. MORE tumors popping up for the rest of her life???? I am reading alot about radiation over chemo but we are just watching & waiting. I am seeking answers just like you. Praying for low side affects from chemo and that chemo will stop these things. Not finding any real answers. I see its been over a yr since you posted here....how is your son now? Did they try chemo?

RE: Desmoid Tumor Sarcoma

by pdtervo on Fri Dec 30, 2011 02:15 AM

Quote | Reply

On May 29, 2011 7:10 AM stiefbears7 wrote:

Our 12yr old daughter had a large 8.5cm desmoid tumor(also called agressive fibromatosis) removed from her calf in Jan 2011. PETscan after found 2 more in same leg but in thigh. All were deep but removed. The calf has had 3 surgs now will clear margins & thigh once. Had baseline MRI done of entire leg last week and found another one above the thigh ones deep and against sciatic nerve. Just started chemo today. St Jude's has been great but no one really knows what will happen next. MORE tumors popping up for the rest of her life???? I am reading alot about radiation over chemo but we are just watching & waiting. I am seeking answers just like you. Praying for low side affects from chemo and that chemo will stop these things. Not finding any real answers. I see its been over a yr since you posted here....how is your son now? Did they try chemo?

It's been almost a year since you posted.  I sincerely hope your daughter is doing better!  Can you tell me please what the last year has been like? How is your daughter doing...physically and emotionally?  We just today got the diagnosis that my son's tumor is a desmoid.  He has been in Occupational Therapy for the last 7 months for what was originally misdiagnosed as a torn tricep muscle, as he can only bend his arm 90 degrees.  We are now waiting for an appointment with a Pediatric Oncologist at Dana-Faber Jimmy Fund Clinic in Boston.  God Bless and here's praying for a happy and healthy New Year for us all!  Patty aka Sam's Mom

49 Posts | Page(s): 1 2 3 4 5  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.