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Carcinosarcoma
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Carcinosarcoma

Has anyone heard of or does anyone have carcinosarcoma of the ovary? or MMMT? I was diagnoesed with it 9 months ago and have had some success with taxol/carbo however there was remaining disease in a lymphnode. Now doc is going to try Doxil. I am 27 years old. Any similar stories with this type of Cancer?
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23 Comments
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Hi there.... I was 26yrs old when I was diagnosed last year with stage 3c ovarian cancer - MPSC, to be exact. I originally thought I might have mixed malignant mullerian tumor as well, but the diagnosis changed after surgery. That's a tough one to treat, as is mine. I'm glad you had some sucess with taxol/carbo. I finished chemo in February, but have recurred already and started chemo in November. This is a crappy disease to have at any age, but for us to be so young, well, it seems more than cruel. Do you have any kids? What stage were you when you were diagnosed? I'm assuming it was caught at a later stage if it's in your lymphnodes. Do you have any family history of cancer? I have none, so it was a real shock for everyone, to say the least. I hope someone can come along and answer your question - I guess I just wanted to jump on and say hi, because we are the same age.
Good luck to you,
Becky
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Thank you for your reply. I am sorry about your situation. I do not have any children, do you? My husband and I were trying when I got cancer. Mine is stage 4 as the pet scan showed cancer in my lungs and liver...Those spots have since disappeared. Thank God.
What kind of chemo are you on now? I hope everthing goes well with you.
The way I look at it a doctor told me 2 months to live...that was in May and I am still going strong and doing a lot better then I was in May. So there is always hope.
I was full of cancer and now it was down to just one lymphnode that my doctor has since cut out...How lucky am I.
There is no history of ovarian cancer in my family however my Grandma had bladder cancer, my aunt had breast cancer I had genetic testing done as I have 2 sisters and it came back negetive. I wonder where this stupid cancer came from then? Anyhow what is name of your cancer? I'd like to look it up. Hang in there we can do this. Thank you.
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Hello, I am very glad that you are doing well with the chemo. My mother was diagnosed with Cacinosarcoma/MMMT of the Ovaries in September 2006 & just passed away on January 10, 2007 at age 42. There is not very much information out there, it is such a rare cancer especially in the ovaries.I have heard that UCLA is currently doing a study on MMMT.I have done a lot of research on it, if you have any questions please write back. I pray for God to give you the strength you will need to fight back & for a full recovery.God Bless!
Amaris
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Hi, so sorry to hear of you having ovarian cancer at such young ages.  My mom was diagnosed with ovarian carcinosarcoma in March 2005, she died August 18, 2005.  She did not respond to chemo at all.  I have been trying to find out what role family history plays in this particular type of ovarian cancer.  I was told by an oncologist at Mayo Clinic that it was not a hereditary cancer, but if anyone has information to the contrary, I would be interested to see this.
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Ariley,
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Ariley,
  After my mom's surgery when they acctually diagnosed her w/ carcinosarcoma ovarian cancer the surgeon recommended that me & my sister be checked on a yearly basis. There reasoning was because my mom was pretty young & was very healthy, he said that given the situation it was likely hereditary. Sometime this year they should come out with the first real test for ovarian cancer. Hope this helps & I'm very sorry to hear about your mom as well.
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I am really sorry that you both lost your mothers. I guess I should know how lucky I am to still be here. What chemos did they try on your moms? Did they both have debulking surgery? Again I am really sorry.
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My mom was diagnosed on June 20, 2006. She began chemo in early July I think it was something like taxol? She did 3 mega treatments 3weeks apart & had her surgery in early-mid September.She had the total hysterectomy, a piece of her liver, spleen, one or two abdominal lyphnodes & her left diaphram. They said they felt very confedent they had gotten all the cancer, he said alot of the extra he took out was to be cautious. They added a stomach port while they did the surgery so she could have the chemo both through IV & through the abdominal area. He said that would increase her chances of it not comming back by 40%.She was suppose to do an additional 3 treatments 2 weeks apart getting it done twice a week (one iv & one port.)I'm not sure what the name of this kind of chemo was, but it was much much stronger than the other kind, she was the only person at the cancer clinic having it done.She was so very sick on this treatment,she couldn't eat, she vomited over a sip of water. It was so pittyful & we couldn't do anything about it. The day she went in for her last treatment they admitted her to the hospital (this was 2 days after Thanksgiving) They said she had an infection & was Neutropenic (had no white blood cells) She finally got out on Christmas Eve & said the cancer had come back & there was nothing they could do. She was too weak from the chemo to fight anything off.She was gong to go to a research hospital for a second opinion, but never got the chance, she passed away on
January 10,2007. This disease is the most terrible thing that has ever entered my life.I pray for you all every night, I want someone to beat it! Don't be a statistic, create a new one! One of hope, you can do it.I have a 4yr old little brother that I have to try to explain why mom is not here anymore & it breaks my heart when he cries for her & asks why she can't come back home. I don't want anyone to have to expalain this anymore.God bless you all & please take care of yourselves.
Amaris
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My mother was diagnosed with carcinosarcoma in February 2006. The disease was Stage IIIc, with a presence in some local lymph nodes. She underwent surgery and they were able to remove almost everything. She was so sick and in such poor physical shape that she almost didn't recover from the surgery. She spent 3 days in ICU and then a month in a nursing home. Then she underwent chemo for 6 cycles - they gave her cisplatin and ifosfamide. It's a tough chemo, and she had a very hard time. She needed a few transfusions. She finished in August, and so far her tests have come back clean. Her hair is growing back and she looks healthy again. We are keeping our fingers crossed. This disease is terrible and I'm so sorry that some of you have had to deal with this at such a young age. I think it usually strikes postmenopausal women. My sister and I have been told that this is not considered genetic, so we should not be at increased risk, but we should get an ultrasound once a year. It's unbelievable that they can not accurately and easily test for this diease, and that so many women don't know they have it until it is so advanced. I will keep all of you in my prayers. Keep believing and focusing on the positive. God bless you.
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Amaris my heart really goes out to you and your family. Thank you for sharing your story, it must have been hard for you. I just want you to know you have given me one more reason to try to beat this thing. Thank you. Also Missym thank you for your inspiring story it is nice to know that some people do actually beat the odds and stats are not everything. God bless you both, I will say a prayer for both of you.
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180852_tn?1200518680
Thank you. Please keep us informed on your progress. Also, I was going through my mom's stuff last night & I don't know if you are wearing wigs or not, but she has a couple wigs if you or anyone else are interested. I know they are very expensive for nice ones & at the donation centers the only stuff they have is for older women. She had blonde hair & I can send you or anyone a picture of the wig, it was a really nice one & I know she paid a good deal of $$ for it. It's one of the most natural looking ones that I've seen. So please let me know & I can e-mail the pics to you. Thanks.
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Thank you for info on the wigs. Right now I am in the business of growing my own hair so I hope I will no longer need a wig. I do have a few and I found after a while I just didn't care that I was bald. It was far more comfortable to be without it this past summer. But thank you anyhow, I know that a lot of ladies on this site are on Taxol which will make your hair fall out perhaps you want to make a new posting to see if anyone is interested. I hope you are doing ok. God Bless you
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I'm new here.  I thought I had ovarian carcinosarcoma beat -- it was diagnosed at Stage IA a year ago and after surgery and six months of ifosfamide and cisplatin, I was given a better than 90% chance of no recurrence.  Yesterday, 20+ tumors were found via CT scan in my lungs.  There is no sign of disease in my abdomen.  My oncologist is recommending carboplatin/taxol to see if we can knock this all in remission.  Does anyone have any thoughts, experiences or advice to share?  I'm so sad.
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I am sorry to hear this news. Sine this thread is so old, you need to start your on with something in the title to catch attention, maybe stage 1a recurrence in lung.  Hugs Donna
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I agree with Donna regarding starting a new thread.  Unfortunately, Stephers is no longer with us.

Best of luck to you and I am certain that there are many that can offer advise but will most likely not respond to this thread.  Your question is very legitmate....please post it as new question on a new thread.

We will help you get through this.

Pam
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my mum had been diagnosed with ovarian carcinosarcoma last June and  had 6 cycles of chemo 3 weeks apart. She had carboplatin/taxol and so far she is still in remission.
She does however struggle to walk now, but if that is all that she's going to have to deal with, then she's more than happy.
We go back to the consultant next week for her next check up, so fingers crossed.
wishing you all well,
Pamela.
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I never thought I'd have to join a community like this.  Thank you to all who have shared their stories!  My 64 yr old mom has been diagnosed with Stage IIIb ovarian carcinosarcomas (MMMT).  She had a complete hysterectomy and two lymph nodes removed.  The lymph nodes tested clear.  She also has a nodule on her lung.  The doctors will not give her a prognosis.  Is this normal?  She just underwent her first round of chemo, taxol/cyto??? combo.  She will repeat this every three weeks and then have radiation.  She did great the first round...no appetite but she didn't vomit.  I was glad for that.  Her joints, however, were extremely painful.  What if anything can I do for her?  I've read soooo many depressing time frames for her situation.  It's made all the harder because we live so far away from her and my dad.
Help!
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Have you considered acupuncture for her pains?  It helped a friend whose cancer has spread to her spine and is on morphine patches.
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Hello I had ovarian carcinosarcoma in jan 2007 -and have been told it is likely to recur-had surgery and chemo -carboplatin and epirubiccin 6 x-have been clear according to ca 125 levels for 18 mths -have retired early am only 51 -spend much more time looking after myself good diet exercise -been to cancer centre and living with cancer course -would say to everyone do stuff that makes you feel good and brings you pleasure-accept help -tell family and friends what you want and need.
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I am also 51, clear cell OC stage 4,,,I stopped my chemo last year Oct and now doing very similar to you...Acupuncture 3 times and reflexology once a week....Besides taking reishi mushroom, vitamins and chinese herbs, I do pranayam breathing daily, stay far away from stressful situations and now looking to do more exercising beside yoga and aqua aerobics once a week...I agree, you are number one and only you can take care of number one...
Love
Kimchi
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135691_tn?1271100723
Do you think we could please start a new thread for this? Stephers was a close friend of mine who passed away this month last year, and it's a little upsetting to see her name re-appear.
Just a thought....
Thanks,
Becky
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I need a 2nd opinon on treatment on recurrent carsinosarcoma of Uterus..

I am 12 months out of treatment and just found out it's back, this time in my lung.

Since it is so rare, I don't know where to turn for an expert.

I live in Wisconsin, but would travel to just about anywhere in North America for a 2nd opion from an expert.

Any suggestions?

Thank you.

Sara

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Hi.  I just wanted to suggest that you repost your question on a brand new thread.  This one is several years old, and unfortunately, Stephers is no longer with us.  I think you'd get a better response with a new thread, as some may see the 2006 date and skip it over.  You might also try asking a question in the expert forum, however, it can be hard since she only takes a certain number of questions per day.  I hope you find the information you need.

Gail
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