Stage Three-mixed mesodermal carcinosarcoma uterine cancer

Girls - ironically I'm recovering from a LAVH on 4/28/03 and have used the pre and post op message board and live chat so much...my lifeline. I get my pathology report and check up on Monday. But this is not about me....

Just got the word that one of my employees was given the diagnosis today that she has "Stage Three-mixed mesodermal carcinosarcoma uterine cancer. She was told"it is not a good cancer to have". She will meet wih an oncologist on the 21st and they plan both chemo and radiation. Help her family to gather information and to minister to them at this time."

I want to help her and better understand what she will be facing.

Anyone here familiar with this type of cancer? Can you help educate me?

Hyster Sister Betsy
LAVH 4/18/03

Although I have no personal knowledge of this type of cancer, the National Cancer Institute have some good technical information at:

http://www.meb.uni-bonn.de/cancer.go...000062938.html

that includes staging, treatment options for each stage etc... and lots of links to other reference documents that might help. It seems to imply that this is the same as a Mullerian Sarcoma (could be wrong there) and I'm sure there was someone a couple of weeks ago also looking for information on this. Try searching the archives for mullerian. I remembered it being one of the rarer forms. On Medscape it says that worldwide there are only about 8 cases per 1 million women so treatment options are not well studies.

One way you could help her is by pointing her in the direction of this website!

Lydia

I unfortunately don't know anything about this particular condition. I did a number of searches on Google using all or some of words you used to describe your employee's condition, but each search came back empty. I thus wonder if there's another, more common name for her disease.

Re: Mullerian (keeping in mind that I'm just responding to the previous post, and I have no knowledge as to whether your employee's situation is the same):

Lena was the one who was looking for information on the Mullerian adenosarcoma. We've been e-mailing each other, so I do know that she's had a horrible time trying to find information about this very rare situation. She has found only three cases of it, and they are all in the US. If you do a search on Google for "mullerian adenosarcoma," you will come up with some of the information that she found. Anytime I found a place that looked helpful, Lena had already been there.

Unfortunately, most doctors have no experience with Mullerian adenosarcoma, since it's so rare.

I hope that your employee is in good hands.

Hi,

I'm Lena that SirenSong is referring to. Firstly I'd like to say you're a wonderful friend to be helping this lady this way and she will appreciate it I'm sure. It's amazing how many people run the other way when you mention cancer - they just don't seem to be able to cope with it because they don't understand it, it makes them uncomfortable and they don't know what to say.

I believe you will find that the tumour is a MMMT also known as Malignant Mixed Mesodermal Tumour of the uterus or Malignant Mixed Mullerian Tumour. If this is what it is, it is rare, a form of uterine sarcoma and is commonly misdiagnosed and mistreated. Your friend needs to make sure she has the best care - a sarcoma centre will be her best bet or a gyn/oncologist who has experience in these tumours.

There is a Yahoo support group for Endometrial Stromal Sarcoma of which this is a variant. The ladies there are great (several of them are also contributors here on HysterSisters) and will help you or your friend with answers to any questions you may have. I think it is important to know exactly what this tumour is called and if it is high- or low-grade. The treatments are very different.

The first link is a bit of information about sarcomas and carcinosarcomas the second is the support group.

[url]www.health.yahoo.com/health/cancer_center/acs_crc/uterine_sarcoma/

http://www.groups.yahoo.com/group/En...stromalsarcoma

Hope this is of help. Most importantly, don't let your friend take on board any predictions of "survival rates" for this particular type of cancer. There are lots of ladies in the ESS group who have proven them wrong.

Good luck

Lena

:

let me try those links again

health.yahoo.com/health/cancer_center/acs_crc/uterine_sarcoma/

groups.yahoo.com/group/Endometrialstromalsarcoma

Lena

A couple of links for you:-

http://www.nci.nih.gov/cancerinfo/pd...arcoma/patient

http://www.nci.nih.gov/cancerinfo/pd...onal#Section_5

http://www.medhelp.org/lib/cancernet/103371.htm



Chris.

Thanks Channeal for the extra site, it was very informative and probably the best one I have seen yet. One thing I would point out though is that, in this document, there is little focus on the benefits of hormone therapy in these cancers. Advanced/recurrent uterine sarcomas appear to be showing great results from the use of hormone treatment/aromitase inhibitors and this appears to shrink, halt growth or at least slow the growth of metastases in many cases. Mention is made of it in this document but as it is a little old these new forms of treatment have not yet been studied fully.

Thanks again

Lena

Unfortunately, there is not a lot of information on this type of cancer and it is really hard to dig up. However, my mother was also diagnosed with MMMT recently and I have done extensive research on what it is, how it is treated, and what the prognosis is. I have learned a lot and unfortunately, what I have learned is not good.

If you really want to know the truth, please read on -- it is not very encouraging... I am going to quote from a number of different journal articles that I have pulled. The bottom line is that at a Stage 3, the 5-year survival rate for MMMT is 0-20% at best. At Stage 3, the only thing that can be done is essentially palliative in nature. This type of cancer (called carsinosarcoma or mixed malignant mullerian tumors or mixed mesodermal carcinosarcoma) is extremely aggressive. It typically mets to the abdominal cavity (bladder or colon) or the lungs/liver. It acts quickly and without compassion. I am in the information gathering stage myself, but if I find out anymore, I will let you know. I am frightened so badly for my mother. I imagine you must feel the same about your friend. Good luck and God Bless!!

-Kathy

Some quotes...

"Uternine MMMTs are an uncomming, but extremely aggressive subtype of uterine cancer, presenting in women over the age of 50 and peaking in incidence during the 6th and 7th decades....Regardless of the treatment modality, survival for patients with MMMT is poor. The overall reported 5-year survival [all stages] is 20%....The high incidence of distant metastasis and recurrence is the main reason for th e less favorable survival rates observed for MMT compared with other uterin malignancies."

"Malignant mixed Mullerian tumors of the uterus are very aggressive tumors with a high mortality rate and a 5-year survival rate of 18-41%. Stage has been found to be a significant predictor of survival.... "


"MMMTs are among the most malignant neoplasms known to occur in the uterus....Seventy-90% of all deaths occurred within 18 months of diagnosis....Most authorities agree that the most important prognostic factor is the extent of the tumour at the time of diagnosis and treatment, the prognosis being very poor when the tumour has extended beyond the uterus [Stage 3/4]. "

Betsy:

I noticed that this post dated back to last spring. How is your employee now? I'll bet it's been a difficult year.

Kathy:

My thoughts are with you and your mom. I hope you're able to savor what time you may have -- an remember that that minority survival consists of someone. After all, there were survivors in those statistics! She has some hard decisions to make in the immediate time ahead, and it's going to be an intense time for you all.

Lena:

I hope you're still subscribed to this thread -- how are you doing? I hope you're continuing to dance with NED .



Audrey

My mom has MMMT that originated in her uterus. I am wondering how your mom is doing? What are the different treatments that she has had, meds by mouth, side effects, recurrence, etc....