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Uterine Carcinosarcoma - December 2010

Judi1213
Posts: 5
Joined: Dec 2010

Hi, I just finished my second round of chemo. I honestly feel good and surprisingly gaining my stamina back. I had emergency surgery in mid October 2010 where I had a complete hysterectomy and was told I was Stage III C. Very little data seems available about this rare cancer and so when I found this site I was encouraged to hear about "some" survivors!!!

I am 59 and living in the moment. I am and always have been a half glass full type of lady, postitive attitude and have a great support system from my husband, two sons and daughter-inlaw. Plus you really do know who your friends are in a time of need. Mine have been so supportive, sending cards, flowers, phone calls, and email. I appreciate all my supporters.

I had a "bald" party a week ago. My youngest son and my husband shaved their heads as did I. Warriors for Cancer. I'm trying to remain proactive and find it helps emotionally and mentally, knowing I can't control most things in my life but the ones I can... I do!!!

If you are a survivor or one that just was diagnoised with Uterine Carcinosarcoma please contact me.

Thank You
Judi1213

nempark
Posts: 596
Joined: Apr 2010

Hi Judi: You have come to the right place. You are going to get a lot of info here, unfortunately, I am not in the know how like the other ladies here. You sound great! I love how your family are supporting you, with your attitude and positive out look on life you will soon be on your journey to recovery. You are right we cannot control everything in life but we can control the way we look at life. May our Great God above bless you and your family and give you the strength and wisdom to conquer this dreaded disease. I was dx with uterine MMMT(mixed mullerian maliginant tumor) that was one year ago. I am in remission but day by day when I think about it I go into a panic. But that goes away as the day goes by. I send you much love and comfort. June

Countrygirl3
Posts: 7
Joined: Dec 2010

Sounds like our timeline is pretty much the same, I had hysterectomy back in may 2010 dignosed with uterine carcinosarcoma stage three, thought they got it all and it came back in sept. so I had radiation now I'm on my second round of chemo too. I'm 55 and living in the moment too.

Hope to hear more from you, I'm just all tuckered out right now.

Thanks, Susan

RoseyR
Posts: 464
Joined: Feb 2011

Dear Judy,

So sorry to hear of your recent diagnosis.

I too was recently diagnosed (September) with MMMT, stage 1B, clear lymph nodes but deep myometrial invasion (about 60% of uterine wall had been invaded by tumor).

You're just a little younger than I am and research shows that that should help your prognosis a bit.

I have no family support (beyond my mother and two kid brothers ) as I am single, alas, but do have good friends.

Have just finished three rounds of carbo/taxol (not nearly as bad as I"d feared!) and am soon to begin radiation. There were four opinions from major teaching hospitals here about how much radiation to have: two said "just brachytherapy" and two said, "full pelvic IMRT radiation PLUS brachytherapy" and I need to make a decision ASAP. Did your oncologist recommend both forms of radiation? Then by end of summer, need final three rounds of taxol/carbo.

Yes, this cancer is very aggressive. On the other hand, I am taking many steps to ensure that my diet is as anti-cancer as possible (have you read the inspiring book Anti-Cancer by Schreiber, a doctor and Ph.D.. in science who overcame brain cancer twice via nutritional and other natural supplements in addition to his chemo?) and trying to stay positive.

Do you feel you have a good relationship with your oncologist and radiologist? Are you being treated at a major center?

Supportively,
Rosey R

cleo
Posts: 125
Joined: Sep 2009

I was diagnosed in Sept 2007 when I was age 67. Stage 3/4 as it had spread to my bladder and lymph glands. Hysterectomy etc followed by 6 weeks of radiotherapy. I did not have brachytherapy. Right now I remain fit and healthy and intend to stay that way. Have slight L leg lymphedema from the removal of the lymph glands but no other effects. Stay positive.
When I saw young mothers having treatment I realised how lucky I am.

jenner21
Posts: 1
Joined: Apr 2011

My mom was diagnosed with uterine carcinosarcoma. She was diagnosed early in 2011. She had surgery. She finished 6 rounds of chemo and radiation. Her cancer was stage at 1A with less than half the invasion into uterine wall. I believe her mass was fairly large.. 5 or 6 com but I know the final staging was 1A. She does not share everything with me, I guess not to worry me. She is also not an internet kind of person and would never look anything up. She listens to her doctors and is positive. I forced her to get a 2nd opinion at time of diagnosis but both recommendations were for the same treatment....surgery, chemo, and radiation. She is now going for her first cat scan since treament and I feel sick all over again. My mom is my best friend. She is an amazing grandma to my two young children and it breaks my heart daily to think about this awful cancer. I am just looking for some hope that she can beat this cancer because it was caught early. I know it is not me with the cancer.. but it is my dear, sweet mother who means to everything to me and my kids. We need her! I hope you are doing well and hope not offended as I am not the one with cancer.

pabjork
Posts: 4
Joined: Apr 2011

Hey sister, I didn't know if there was anyone out there like me, and here you are. I turned 50 a couple of weeks after my hysterectomy in July, and I finished 6 rounds of Ifex/Taxol in early December 2010. There is some obscure data available on the internet but you have to dig for it, like page 4 or 5 of a google search. Many late nights online because the stupid steroids wouldn't let me sleep.

What I learned is that we are quite young for this disease. All of the risk factors that I have read about do not apply to me (race, # of pregnancies, weight), therefore none of the survival statistics will either.

You will beat this with your mind as well as the drugs. Support network is crucial (my husband is amazing, went to every dr appt and chemo session with me). I have 3 sisters who fought with me as well.

Apart from a complication in early February ("vaginal dehissence after evisceration", or, "my intestines fell out of my whoo-whoo"), I am feeling great. Just had my first 3 month check up, will learn the CA 125 count Thursday, but I am pretty confident that we beat this thing.

Good luck to you, God Bless, and let me know how things are going. Sisters must stick together!

hopeful girl 1
Posts: 454
Joined: May 2010

Hi!

I was diagnosed in Feb 2010. Had surgery in March 2010. Chemo and radiation in 2010, last chemo 2010. 6 rounds of taxol/carbo and 5 weeks of radiation.
I am considered to be no evidence of disease right now. Last CA125 was a 5.

Keeping my fingers crossed, and thrilled to be alive.

32ripley
Posts: 1
Joined: Sep 2011

My mother was just diagnosed with uterine carcinosarcoma August 2011. She has been scheduled for surgery the last of Oct. Did you or anyone else have to wait that long for surgery and what was the cancer progession like? My mother is 76 and has heart problems to boot. Any advise would be helpful.
32ripley

RoseyR
Posts: 464
Joined: Feb 2011

Dear 32Ripley,

Dr. Russell Blaylock in his book Natural Strategies for Cancer Patients always advises patients to WAIT a few weeks before surgery and another few weeks before they WANT you to start chemo to build your system up through nutrition.

I highly recommend that you buy his book on Amazon.

Best,
Rosey

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

32ripley: I think your mom's age was taken into consideration as cancer usually grows more slowly in elderly people. Elderly people usually don't do a very good job with digesting food so I think it would be a good idea for your mom to take digestive enzyme with meals to assure assimilation of protein which is vitally important for wound healing.

Carolen

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

My mother n law was diagnosed with lymphoma cancer 2 years ago and chosen to do nothing for treatments. Doc agreed as she's 86 now and he does sample her blood each month. Thusfar, no progression of cancer and she feels GREAT!!

Carolen is correct, cancer does tend to grow more slowly with the elderly as we have seen with my mother n law. In the end she will NEVER consider treatments as they would kill her.

I as well was diagnosed with MMMMT Feb /09 and doing quite well. Once I was diagnosed I was in surgery 3 weeks later for hysterectomy. Did the doc explain a bit on his thought of treatments and her age???

Best to you
Jan

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

Just downloaded the Schreiber book to my kindle - thanks for the recommendation. Just had a second opinion on my endometial carcinosarcoma - no treatment, as it's Stage 1 (fortunately) even though grade 3 - is a reasonable option, it seems. I like that opinion - hate being messed with if it can be avoided and she feels there's a good chance of it not coming back. Think I'll go with that - it's only 3 weeks since my hysterectomy and it took it all away. See my new post today (7th Dec.2011) re Pelvic Radiation. Joan

RoseyR
Posts: 464
Joined: Feb 2011

Joan, what stage was your MMMT diagnosed at? Stage IA? IB? Were lymph nodes clear? Was there any myometrial invasion of more than 50%? Just wondering because usually they recommend very aggressive treatment for this kind of tumor.

Best,
Rosey

Susanna23
Posts: 66
Joined: Dec 2010

I will add to what Rosey said. I was initially diagnosed with grade 3 adenocarcinoma (the more common type of endometrial cancer) back in October 2010 and I had TAH/BSO the following month with removal of lymph nodes and analysis of washings. The pathology after surgery showed I had carcinosarcoma (MMMT) not adenocarcinoma; it was staged as Ia, as lymph nodes, washings were negative, no myometrial invasion. There was some talk by my surgeon about chemo and putting me in a clinical trial where I might get it HOWEVER, he then referred me to the oncologist in charge of the trial and she said I was not eligible as I had MMMT but she would offer the option of adjuvant chemotherapy. The way they both put it to me was that I would be considered cured and no further treatment if it had indeed been adenocarcinoma (small tumour, no spread, caught early etc) but as it was MMMT and aggressive, there could be already be micrometastases which could grow into a tumour but the chemo could kill them off before that could happen...But she also said there was no firm evidence that the chemo would help, 'cos this cancer is so rare there haven't been many clinical trials, and certainly not one to address this question.
So I did have the chemo and so far I have been fine - NED, as they say - but I have no way of knowing whether all the cancer was removed last November and there was no need for the chemo, or whether it will come back, chemo or not!
Joan, I do not want to frighten you (I have plenty of that scarey feeling myself, with people suggesting that since I do not have regular CT scans on check up, something may have been missed...), and no-one wants chemo or radiotherapy if they do not need it, but since Rosey brought this up I thought I would add my experience in case this is helpful.
Btw, I am being treated at UCLH, London, but have found my treatment for stage Ia MMMT is done elsewhere, as I am in a few other groups dealing with this issue.
Best regards
Susan

RoseyR
Posts: 464
Joined: Feb 2011

Don't want to infringe on your privacy, Joan, but I too am concerned and wonder if your second opinion came from t a major cancer center in a metropolitan region or a smaller hospital--as usually, recommended treatment for MMMT, even stage 1, is fairly aggressive.

On the other hand, I am totally respectful of any of us who HEARS the usual prescribed treatment and opts instead to abstain from that treatment, choosing to rely solely on diet and nutrition.

Best,
Rosey

marcia59
Posts: 1
Joined: Dec 2011

I was just diagnosed with endometrial cancer. No staging yet. Cells are grade 3. They keep telling me not to worry about the grade of the cells. Actually, they (the docs & nurses) don't want me to do any research and to stay off the internet. All I want to do right now is cry. I will be having a complete hysterectomy on Dec 27, including nodes. They say may need radiation and aren't talking about chemo. I apparently don't know as much about this as the ladies on this site.

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

Hang in there. My GynOnc told me the same thing about the Internet. If you do just a regular search without being on a cancer web site like ACS and other medical sites the information is very old. If you do read just remember that the case studies do not include you or even another woman that is like you so you cannot judge the studies to yourself. Every woman is different just like ever cancer is different and each treatment is different. I was found to have MMMT stage 3C1 in April 2011. I finished Carbo/Taxol Chemo only for 6 treatments every 21 days. I had no radiation. Some women on this site had radiation and different chemo treatments. So every case is different. Try not to worry to much. Depends on how your hystercomy is done; robatic or open, will determine how long you are in recovery mode. I had the abdomin open surgery so they could look around the other organs to see if cancer had spread. It had not, would not have been able to look around with the robatic surgery. Recovery was about 4-6 weeks. I worked and only took off when I felt bad during chemo. It is do-able. Yes I did lose my hair but it grows back after chemo. Enjoy as much as you can your Christmas. Get a good support group around you of family and friends and try to have a positive attitude as it does go a long way. Good Luck. trisha

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

I ditto all that Trisha just said - great advice. I was diagnosed with grade 3 (uterine papillary serous carcinoma, UPSC) in 2008 and it is very scary. One thing that I am still learning is patience. This is so challenging because I want my answers and everything else NOW!! So hang in there. Stay in the now as much as possible. You will get through this.

One additional thing to ask your doctors - I suggest you get a tissue functional profile (or assay). This will help determine which chemo best treats your particular cancer. Not all doctors do this routinely but it will help save guesswork later.

My best to you, Mary Ann

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

I know you are worried about your sweet mother. It is wonderful that she is so positive - I think this helps.

She has complied with recommended treatment and it is routine to schedule scans to check things out routinely. She will have a surveillance protocol.

Try not to get too far ahead of yourself with anxiety and worry. We all walk this journey one step at a time.

God Bless. Mary Ann

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bots
Posts: 53
Joined: Sep 2009

I was diagnosed in July 2009 with UPSC (Stage 1A, Grade 3). Yes, it is very scary, but with only 3 chemo sessions and no radiation, I am still cancer free. I just had my 74th birthday and a clean CT scan. I spent a wonderful birthday with my husband and my grandchildren. I am telling you this because I want you to know, that even with mothers who are grandmothers, there is life after cancer. Family love and support mean the world when one is worried about cancer, so just keep letting your mom know that you are there for her. Here's to a very happy 2012 for you and your family.

Bots

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Hi Joan

just want to wish you well with what avenue you choose to take. There are a few of us who have taken the route of no further treatment so there is support for that. It's not well recieved and highly controversial.

Grace

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