Chondrosarcoma - or any Breast Sarcoma. Anyone out there?

Heidi9256

I was originally diagnosed with IDC, HER2+, Grade 3 carcinoma.  Treated with 6 cycles of TCH then had bilateral mastectomy where a 2.5cm tumor was removed - clean margins, no lymph node involvement.  This turned out to be chondrosarcoma of the breast.  It's like bone cancer in your breast.  VERY rare - about .01% of breast cancers.  Standard treatment appears to be removal then radiation as sarcomas are not responsive to chemo.  They are aggressive and have a high risk of recurrence.  My biggest concern is that this thing was hiding out in there, undetected and sending out little sarcoma soldiers looking for someplace to matastasize.  Pet scan tomorrow but not sure if it will be reliable since I've just had surgery and reconstruction.  I'll probably light up like a Christmas tree.  Planning on going to MD Anderson in Houston since they have a Breast Center & a Sarcoma Center.  I need more than radiation and waiting to see if it returns as a treatment plan.  Anyone else have experience with a sarcoma of the breast?

Cookies

what did Anderson say and/or do? I have metaplastic spindel cell - which is also like a sarcoma - seen at Anderson and they are still reviewing slides - this far recommendation is AC and taxol

exbrnxgrl

Hi cookie,

This post is over a year old, with no responses. You might want to start a new thread to discuss your situation.

Heidi9256

MD Anderson reviewed my pathology (again) and diagnosed metaplastic carcinoma with matrix producing chondroid differientiation. Metaplastic is very rare and has several subgroups of which matrix/chondroid is the rarest so they had difficulty nailing down a diagnosis. It took 3 pathologists. I had taxotere, carboplatin and herceptin, bilateral mastectomy and then 6 weeks of radiation. ACT seems to be the most common chemo for metaplastic if it is triple negative. I was not triple negative (HER2 +). MD Anderson recommended a platinum based chemo for mine. They also recommended chemo before surgery which I did. I am approaching my 2 year anniversary from diagnosis and am cancer free and doing well. My best advice is to stay off the internet. Most of the info about metaplastic is old and outdated making the statistics look really bad. They only started recognizing metaplastic as a distinct form of breast cancer about 10 years ago and there are so few of us who get this type of breast cancer that they just don't know. Newer studies are reflecting better survival rates. There are a couple of support groups on Facebook for metaplastic breast cancer - just do a search in Facebook and they'll pop up.

wrenn

I was unable to complete chemo because of complications. I only had the first infusion. My oncologist didn't seem concerned because of the understanding that chemo is not very effective on metaplastic types. I am doing ok a year later and hoping to beat the odds. :-)

Heidi9256

Chemo works on some subtypes of metaplastic and not on others. My tumor responded to the TCH and shrank considerably. It's kind of a crap shoot. My oncologist also said that we need to treat the IDC as well as the metaplastic component and the IDC usually responds to chemo. There's a big debate over metaplastic as to whether it should be treated as a carcinoma or a sarcoma or treated as two cancers.

NATSGSG

Hello Heidi9256:

I know your thread is a while back. But since it discusses Chondrosarcoma of the breast , I just wanted to stop by and share this  link below that contains 428 articles pertaining to this subject so that anyone who may have this rare disease have something to read up on when they visit you. Hope you'll find them useful and informative.

http://www.ncbi.nlm.nih.gov/pmc/?term=Chondrosarcoma+of+the+breast

In the interim, suggest that you or anyone may wish to visit the Society for Immunotherapy of Cancer (SITC) to see if there's anything in the works using immunotherapy to treat this disease. It is current the hot cancer treatment topic. Or, you may wish to have them include you in their mailing list should there are any new development? Here's their link:

http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

P.S.

This VIDEO link talks about the use of immunotherapy in cancer treatment (current hot cancer treatment topic) and fascinating to watch.

http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1