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Newly diagnosed with carcinomasarcoma -MMT Sloan Kettering?

Teamkelly
Posts: 50
Joined: Sep 2012

Hi, I am new, my sister in law is Kelly, I am her advocate Nicki. Kelly had surgery on Sat the 8th of September, she was in the hospital 2 days and came home yesterday she is doing great .We know she has a high grade heterologous tumor, this used to be called MMT now is called carcinomasarcoma . The doctor keeps saying she has a better than 50% survival rate, we do not have pathology from surgery yet, hopefully tomorrow. Her surgeon is gym/onc suggesting 6 doses of chemo 2 drugs ( don't have names yet). The doctor will have results tomorrow but wants us to wait 2 weeks when we come in for follow up, sent him an email this morning with list of questions, asking him to answer as soon as pathology comes in, is this standard procedure?

We are looking at Sloan Kettering in New York (she is in California). Is anyone familiar with Dr. Marlee Hensley at SK? I have not been able to find hospital on the west coast that specializes in CS, any information is welcome.

Bless all of you,
Nicki

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Nicki

Have you or your sis in law looked into Stanford? They have a new specialty center. It's the Womens cancer Center a part of the Stanford Cancer center. There is a doctor who heads this new center doing a new clinical trial open to all new and recurrent mmt or carcinosarcoma patients. His name is Dr. Jonathan Berek.

I go to this center, for ovarian. I have traveled as far as Texas(MD Anderson) for a different cancer treatment, but really find it hard to be away from home. I don't know what part of CA your SIL lives in, but it makes life a little easier to be closer to home.

Please feel free to PM me if you or your SIL have any questions about Stanford and their docs. I have seen a good number of them.

Hugs
Lisha

nempark
Posts: 581
Joined: Apr 2010

I know nothing about those hospitals. I have been In Englewood Medical Center in New Jersey. I was dx in 11/09 with stage 1a grade 3 MMMT. Had a total hyst and 6 doses of chemo, fortunately for me side effects were minimum. My Doctor is one of the world's leading Doc in Robotic surgery and also performs surgery without blood transfusions. I hope you get the help you are looking for and I commend you for being there for your sil. Good health to both of you. Please keep us informed.

Teamkelly
Posts: 50
Joined: Sep 2012

Thank you Forme and Nempark. She lives in So. Cal, so I will check out Stanford, she has no children and she and her husband travel quite a lot so she may not mind not being at home, but I will talk to her about this. Nempark if you were treated in 09' have you had any recurrence? We are waiting for results but we know it was all the way thru to the myometrial of uterus, we also know from initial biopsy it is high grade. The doctor says she has a better than 50 percent survival, but he has said that all along. My husband thinks they tell you that because it is a standard line when they really do not know yet? Kelly does not want to do chemo, she wants to look into alternatives,, any thoughts on that?

Thank you both.

Nicki

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

...is a very rare, very aggressive type of Uterine cancer. I would be a little skeptical of a doctor that can suggest odds before he's even seen the pathology report. I was misdiagnosed through a biospy and found out I had MMMT rather than another form of uterine cancer so the biopsy can only tell you so much. Did they take any lymph nodes? Once she gets the results of the pathology report, the cancer will be staged and they should have a better idea of what they are dealing with.

I was stage two (possibly three - but no lymph nodes were taken so not sure), high grade and finished six rounds of chemo, 25 rounds of radiation and 3 rounds of brachytherapy (internal radiation), back in March. So far, so good.

Because this cancer is so aggressive, she will want to hit it with everything she can, chemo, radiation etc unless, possibly it is still at stage one. Still....I personally wouldn't risk it. Generally, reoccurences are harder to treat. Of course that is just my opinion...others here might suggest something different. I know many ladies follow alternative treatments in conjunction with standard medical treatments.

Take care,
Cindy

Teamkelly
Posts: 50
Joined: Sep 2012

Cindy,

I agree, he told us before the surgery that he does not do radiation, just chemo, although I had read about sandwich therapy using both. I am glad you are doing so well! We will just have to wait for biopsy, she has already said she is not going to follow blindly, that is why I am on here. She will be joining soon.

Thanks again,

Nicki

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Welcome to this forum - though sad that you and your SIL have to enter this world. She is lucky to have you.

I have UPSC, uterine papillary serous carcinoma - another rare and aggressive grade 3 cancer. It is highly recurrent and I am dealing with my second recurrence since diagnosis just 4 years ago today.

I strongly suggest that you ask the doc for a tissue assay which hopefully already has been done (I never had to ask b/c my doc orders these but not everyone does). This functional profile will give your docs info on best agents to treat the cancer. I reviewed mine today with my doc and we decided on a new course of treatment since the initial plan did not help.

The "norm" is carboplatin and taxol. But not everyone responds to this so the assay will help identify best course for your SIL.

Try to stay positive and not let stats discourage you. It can be pretty scary sometimes but each of us is a statistic of one as Jan always reminds us.

Best to you and your SIL, Mary Ann

Susanna23
Posts: 66
Joined: Dec 2010

Dear Nicki, Kelly
I'm in London, UK. Diagnosed with uterine carcinosarcoma November 2010 with pathology after surgery for cancer (report less than two weeks after the op) and oncologist here at UCLH suggested six rounds of adjuvant carboplatin/taxol which I had, finishing April 2011. I was stage Ia. Since you mention survival stats, I'll mention that my oncologist said 30% chance of recurrence to lung and only 5% chance of recurrence to pelvic region (in latter case they would treat with radiotherapy which I have not had so far - you can't have it twice). I did think about challenging her on where she got these figures from - but decided to just get on with it! Nearly two years on, I do feel very well - have now had several follow up check ups. I have done/do lots of alternatives - Reiki, mindfulness, vitamin D, juicing, Iscador (mistletoe) - have a complementary care doctor on the NHS which I'm very grateful for. Anyway, best to take it one day at a time.....I wish you all the very best and am always here if you have questions.
Susan x

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

I was DX on 1 April 2011 after a D&C that there wer MMMT cancer cells. I had a total abdominal hysterectomy on 8 April 2011. Had 6 rounds of carbo/taxol from May to Aug 2011. No radiation. I am NED as of now, will it come back, only God knows the answer to that. Will I continue to fight if it does yes. I am glad to hear that you are there for your SIL. It does help to have family and friends around. Second opinions are a good thing to get to. I am in Dallas Texas so I have not heard about the other hospitals listed in CA or NY. Adding ya'll to my prayer list as I do with all those on this site. Good Luck with your search, trish

nempark
Posts: 581
Joined: Apr 2010

No thank God No recurrences. When I was dxd I did not think twice about chemo. I just did what I was told to do. Didn't have a clue about anything else. I guess ignorance is bliss. There are other MMMt Survivors on this board. I am now dealing with my daughter since 11/11 Leukemia. Now this is what you call HORROR. I am devastated. Be well everyone.

Teamkelly
Posts: 50
Joined: Sep 2012

Diagnosis is carcinomasarcoma stage 3c1. It is in 1 lymph node and the pelvic wash shows it is in the abdomen. The doctor is recommending chemo only with 2 drugs carobtaxol and something that starts with a p. No radiation. We were sad for a moment and then we all decided we would fight, of course the decision is Kelly's and she has to walk through it, but we will be with her every step. Sent everything to Sloan K we will see what they offer.

Nempark so sorry to hear about your daughter, I have 2 myself, what is her prognosis?

Nicki

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I'm glad she is getting a second opinion. I would be leery of a doctor that recommends NO radiation from the get go. In fact, I don't know of anyone off the top of my head that has not had radiation with a stage 3 MMMT diagnosis. The sandwich treatment you mentioned is very common with MMMT. Carbo is a chemo drug and taxol is a chemo drug and that is a standard treatment cocktail. Not sure what the third drug would be.

There is a Yahoo group that you and she may also want to join that is dedicated exclusively to MMMT. Lots of knowledgable people that can help her along the way.

The beginning in always the worst...sending her positive thoughts in this difficult time...but know that she will get through it.

Take care,
Cindy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I as well was diagnosed with MMMT, stage 3c, found in 1 pelvic lymph node. Had 6 rounds of Carboplatin and taxol drugs, then sandwiched between chemo 33 rounds of external pelvic radiation. Wondering why not suggesting radiation, as in my case my doc highly recommend it as it zooms in on where the cancer was found in my lymph node with me, and the chemo hits all the scattered cancer not generally seen by the surgeons.

I've been NED since completion of treatments 3 years ago. This cancer is very aggressive and we must hit it with all the bullets as it has a very high chance of recurring.

When anyone hears the words 'YOU HAVE CANCER' we are down and want to have a pitty party. This is not the time to stop, one must pull themselves up and fight like a crazed animal and do what we can to beat this devil. I as well have wonderful family support, plus great friends who were with me the whole way. Glad you're with Kelly as well.

Keep us posted on the progress.

CANCER IS NOT A SENTENCE IT'S A WORD~~
Jan

RoseyR
Posts: 462
Joined: Feb 2011

I too was diagnosed with uterine carcinosarcoma (stage IB, sixty percent through the myometrium but with 19 clear nymph nodes) exactly two years ago--and I feel just great.

Had "sandwich" treatment (carbo/taxol three times, followed by 25 pelvic radiation treatments, followed by three more treatments of carbo/taxol). Finished all treatment last August with NO side effects from chemo or radiation beyond lost hair and some fatigue at the end of ALL treatment.

I strongly advise you to see, in addition to a good oncologist, a doctor who practices integrative medicine to help get your mother through all the treatment with minimal side effects.

Several recent studies that my oncologist showed me revealed a five-year survival rate of 58% among women with this kind of tumor who had received both chemo and radiation--higher rates than those who had received only one or the other.

If you need advice on supplements to minimize side effects, feel free to email me at upper left side of screen.

And Jan, have lost your email address (accidentally deleted much of my email on new
Smart Phone, which makes me feel dumb!), so would love to hear from you via private email.

Love,
Rosey

nempark
Posts: 581
Joined: Apr 2010

since 10/11, almost one year. Talk about a horror movie. well this is one. Horror of horrors from the beginning to now. But as time goes by we are slowly beginning to accept and move on, but how can you move on joyfully when your daughter is constantly sick in bed and forget it after chemo she gets so tired and sick sometimes I feel that she will not wake up. Hope you guys are all doing well.

nempark
Posts: 581
Joined: Apr 2010

since 10/11, almost one year. Talk about a horror movie. well this is one. Horror of horrors from the beginning to now. But as time goes by we are slowly beginning to accept and move on, but how can you move on joyfully when your daughter is constantly sick in bed and forget it after chemo she gets so tired and sick sometimes I feel that she will not wake up. Hope you guys are all doing well.

nempark
Posts: 581
Joined: Apr 2010

since 10/11, almost one year. Talk about a horror movie. well this is one. Horror of horrors from the beginning to now. But as time goes by we are slowly beginning to accept and move on, but how can you move on joyfully when your daughter is constantly sick in bed and forget it after chemo she gets so tired and sick sometimes I feel that she will not wake up. Hope you guys are all doing well.

Naturo
Posts: 4
Joined: Sep 2012

Hello, I would recommend as a third opinion on treatments, a Moss Report - it costs about $297. http://cancerdecisions.com/

Best Regards to all ...

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